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DR SARAH MYHILL, UPPER WESTON, LLANGUNLLO, KNIGHTON, POWYS LD7

ISL
TEL: 01547550331 Fax: 01547550339 email: office@doctormyhill.co.uk Website: www.drmyhill.co.uk
Office secretaries: Caroline, Colette, Jane, Judy, Hania, Helen, Lyn, Rosie and Nicky
May 2006: 21st Edition (revised and updated)
DIAGNOSING AND TREATING CHRONIC FATIGUE SYNDROME
INTRODUCTION
This book contains most of those things which CFS patients must do to get well (don’t miss out bits
or you may fail!). All the background information is available on the website www.drmyhill.co.uk. All
the tests I discuss are also available through this website. My aim is to give all CFS sufferers and
their therapists the knowledge and the access to tests to get themselves on the road to recovery. At
present I am overwhelmed with new patients and cannot see more. However, I now have a very
experienced team of secretaries who can certainly advise you on the basic work up and recommend
appropriate tests. I can do a detailed letter to your GP explaining what action needs to be taken on
the basis of such tests. If your GP is unable or unwilling to help with, say B12, magnesium, thyroid
and adrenal function then I can help by supplying some of the necessary, with the GP’s knowledge.
Or if you get to the stage when you need further help such as desensitisation I can refer you to a
suitably qualified local practitioner, a list of which is at www.ecomed.org.uk

Since 1982 I estimate I have seen and treated over 4,000 patients with CFS. I now know that there is
only one way to get well and that entails a whole package of treatment. That package of treatment
has to be done in the right order – it is a little bit like building a house – there is no point putting the
upstairs windows in until the foundations and walls are in place. Many patients come to me having
tried thyroid or B12 injections or whatever, but unless the diet, sleep, pacing and micronutrients are
in place and correct, they won’t see benefit. I ask all my patients to tread this hard path because I
know of no other way to get better. This requires a complete change in lifestyle and changes are hard
to make, especially when the poor patient lacks the physical, mental and emotional energy to make
these changes at all! Each patient has to become his own doctor, detective and psychotherapist to
work out the best strategies for recovery. I can point patients in the right direction, provide the tests,
information and therapies to get sufferers better, but there is only one person who can actually walk
that path.

The basic package of treatment and approach to treatment is the same for everybody, but each
person discovers a vital key or keys which really give them a quantum leap in improvement and may
even be unique to them. For some people who are poisoned it is the detox regime that makes them
better. For others, removing mercury amalgam opens the floodgates to recovery; thyroid hormones
for many are an important factor. But there is no point putting the esoterics in place until the basics
are done.

Recovery is never a smooth ride because life has a habit of getting in the way and throwing in extra
stresses that you can do without. Whenever a hiccup occurs, always go back to the basics. People
recover from CFS, firstly by getting their regime as tight as possible (with respect to diet,
supplements, pacing, sleep and detox), then they start to feel better and only then should they start to
increase their levels of activity. BUT if they get delayed fatigue, then reduce activity. Most people
end up with a juggling act between how strict their regime is, how well they feel and how much they
can do. The regime is for life – but once in place it substantially reduces risk of heart disease, cancer
and degenerative conditions.
_________________________________________________________________
Sarah Myhill Limited Registered in England and Wales Registration No: 4545198
Registered office: Upper Weston, Llangunllo, Knighton, Powys, Wales LD7 1SL

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Think of getting better from CFS as one would build a house. Start off with the foundation stones
and work up. There is no point putting the upstairs windows in until the downstairs is done. When
things go wrong, go back to the basics and think foundation stones again:

DIAGNOSIS CFS BIOCHEMICAL PROFILE - THE TEST FOR CFS

FOUNDATION STONES SLEEP DIET PACING MICRONUTRIENTS

GROUND FLOOR GIVING MITOCHONDRIA THE RAW MATERIALS TO FUNCTION

FIRST FLOOR ANTIOXIDANTS and DETOX regimes

SECOND FLOOR HORMONAL FACTORS, CHEMICAL CLEAN UP (pesticides, mercury,


silicones, carbon mon oxide), ALLERGY (Foods, chemicals, aeroallergens and micro-organisms ie
yeast, bacteria and moulds and desensitisation), GUT DYSBIOSIS (Candida)
HYPERVENTILATION, PSYCHOLOGICAL FACTORS, CHRONIC INFECTIONS

ROOF - MANAGING ALL THE ABOVE AND HOLDING IT TOGETHER!

Recovering
CFS sufferers recover in three stages. First of all they have to get the regime in place with respect to
sleep, diet, micronutrients, pacing, correcting mitochondrial function, detoxing etc. Once the regime
is tight they start to feel better. Once they are feeling better they can then start to do more, but the
doing more must not be at the expense of feeling worse, or relaxing the regime! This is
sometimes the most difficult stage to manage. When one is really ill, one has no choice but to rest.
With recovery it is so tempting to relax the regime – in fact everyone does this and relapses as a
result.

With age, I believe one can feel just as fit and just as well, but to do so one has to do all the things
my CFS patients do. Young people can get away with blue murder! They eat junk, don’t take
supplements, stay up all night and have loads of energy! I am lucky to have lots of energy, but only
because I eat a stoneage diet, sleep 9 hours regularly, take a good range of micronutrients, exercise
and ration my addictions (mainly caffeine, chocolate and alcohol!) most of the time! If one can get
the above regime in place and hold it there you can expect to live a long and healthy life after
recovery.

Who Am I?
I have worked in NHS and private practice since qualifying from the Middlesex Hospital Medical
School in 1981 (medicine with Honours). I am the Hon Secretary of the British Society for
Ecological Medicine (renamed from the British Society for Allergy Environmental and Nutritional
Medicine) a medical society interested in looking at causes of disease and treating through diet,
vitamins and minerals and through avoiding toxic stress. I help run and lecture at their training
courses. I lecture regularly on organophosphate poisoning, the problems of silicone, CFS and so on.
I am one of the medical advisers for Action For ME. Many appearances on TV and radio. I am a
founder member of OPUS (organophosphate users supper group) – a charity to help sufferers of
pesticide poisoning.

I have two girls Ruth 24 (studying Philosophy) and Claire 22 (studying Spanish). My hobbies are
anything to do with horses! In the winter I hunt, in the Spring and Autumn team chasing and in the
summer I go British Eventing – dressage, show jumping and cross country. I have just started my
career as a point to point jockey and out of four runs I’ve had a first, second, third and also ran!.

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This is a picture of me on my horse! Love her!

Sorry, the picture is not available in this version – it is pasted in to the hard copy of the
book

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CONTENTS
PART ONE - AN OVERVIEW OF TREATMENTS
THE NITTY GRITTY OF WHAT YOU ACTUALLY HAVE TO DO TO GET WELL 6
How I can help / List of other practitioners of Ecological Medicine
FIRST STAGE – Make sure the diagnosis is right – What is Chronic Fatigue Syndrome
SECOND STAGE: What every CFS sufferer must do. Four foundation stones of recovery
THIRD STAGE – Building on the foundations: Tackling specific problems
FOURTH STAGE: Unusual or multiple allergies
FIFTH STAGE: Weird and Wonderfuls

PART TWO – THE FIVE STAGES OF RECOVERY IN DETAIL


FIRST STAGE – MAKE SURE THE DIAGNOSIS IS RIGHT . . . 21
USEFUL TESTS for investigating the patient who presents with chronic fatigue
How long before I recover
Dealing with doctors

SECOND STAGE: WHAT EVERY CFS SUFFERER MUST DO TO GET WELL.


THESE ARE THE FOUNDATION STONES OF RECOVERY . . . 30
REST and PACING
Work and pacing
Other ideas about managing energy levels in CFS
The Ten Commandments
VITAMINS AND MINERALS – what to take and when . . . . . 36
Nutritional Supplements
YOU MUST SLEEP - sleeping drugs . . . . . 39
DIETS . . . . . . . 43
Hypoglycaemia
Diet for CFS – this is a diet which all CFSs must try
Probiotics – Grow Your Own Gut Flora
TREAT MITOCHONDRIAL METABOLIC DYSLEXIA . . . 52
Interpretation of the mitochondrial function test
Implications for treatment
DETOXIFICATION . . . . . . 64
Do a good chemical clean up
Do not take the Pill or HRT
Consider sweating regime to reduce the body load (FIRS)
AVOID INFECTIONS WHEREVER POSSILBLE . . . . 71

THIRD STAGE – BUILDING ON THE FOUNDATIONS :


TACKLING SPECIFIC PROBLEMS
ADDITIONAL VITAMINS AND MINERALS . . . . . 74
MAGNESIUM
Fresh ideas on treating magnesium deficiency
Magnesium by injection
Magnesium PR
Magnesium by nebuliser
B12 INJECTIONS – rationale for using . . . . . . . 80
What to do if your GP refuses to give you magnesium and B12
High dose B3 (NAD)
Antioxidants
Vitamin D

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COMMON HORMONAL PROBLEMS . . . . . . 84
Underactive thyroid
Underactive adrenal gland – DHEA and cortisol
Human Growth Hormone
GUT DYSBIOSIS . . . . . . 91
Testing for gut dysbiosis
Management of fungal type gut dysbiosis (candida)
Management of bacterial type gut dysbiosis
Problems with moulds
HYPERVENTILATION . . . . . 95
PSYCHOLOGICAL ASPECTS OF TREATING CFS . . . . . 99
Antidepressants in CFS
PAIN CONTROL . . . . . . . 105
Muscle pain in CFS

FOURTH STAGE: EITHER MULTIPLE ALLERGY OR UNUSUAL ALLERGIES


Multiple Chemical Sensitivity (MCS) . . . . . 112
ENZYME POTENTIATED DESENSITISATION . . . . . 114

FIFTH STAGE: WEIRD AND WONDERFULS


Healing, geopathic stress, Guaifenesin, sleep apnoea, EPO etc. . . . . 120

PART THREE - ADDITIONAL INFORMATION . . 123


Treatments which are not worth trying
Toxic causes of CFS
Detoxing and Treatment of multiple chemical sensitivity Organophosphate poisoning –
details of diagnosis and treatment (also carbon monoxide poisoning)
Dental amalgam and mercury toxicity . . . . . . . 135
CFS ability scale
Osteoporosis – a long term complication of CFS . . . . . 139
Helpful organisations – support for patients and doctors . . . . 143
Medical Hypothesis – The biological basis of fatigue: a proposed underlying
pathophysiological model for Chronic Fatigue Syndrome with implications for
treatment and a diagnostic test . . . . . . 145
Citizens’ paper – Results from the Mitochondrial Function Test 156

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PART ONE - AN OVERVIEW OF TREATMENTS

THE NITTY GRITTY OF WHAT YOU ACTUALLY HAVE TO DO TO GET WELL AND
HOW I CAN HELP

In this chapter I give a much more detailed overview of the treatments for CFS patients and the
sequence in which they need to be introduced. In other words you will see how the “building the
house” analogy from the Introduction is meant to be translated into specific actions that each patient
needs to try. At the beginning of this section (i.e. First Stage: Make sure the diagnosis is right) I
explain in detail my hypothesis about the cause of CFS and naturally all my treatment
recommendations follow from this understanding of what chronic fatigue syndrome is.

Before you go on, I would like to make clear my potential role in your process of recovery if
you decide to follow my advice. I appreciate that it can be a daunting task to make a start and
this is why I have made my advice as structured and clear as I can. This means that you start
with the MITOCHONDRIAL FUNCTION PROFILE test to confirm your diagnosis and
identify physical problems with your energy production, and then you do all you can to make
sure that you have the Foundation Stones (see page 2) firmly in place before going on to the
mitochondrial regime.

The major logistical problem I am running in to at the moment is a simple numbers game. I
have so much happy feedback from people doing these regimes and taking the tests that I am
currently being overwhelmed with requests for tests. This means that I cannot provide the full
back up service to everybody that I would most like to provide. Some of the following
paragraphs will address some problems that can arise, otherwise please, choose from one of
the following doctors who understand the issues addressed in this handout.

Problem No.1 - Going on the regime makes me feel worse.


It is normal for somebody with allergy symptoms to get withdrawal symptoms when they initially do
the diet – the common allergens cause withdrawal for four days, but wheat can cause withdrawal
symptoms for up to a month. People who have carbohydrate intolerance can get withdrawal
symptoms lasting for several weeks. Therefore, the dietary regime is a counsel of perfection, go into
it gradually and tighten up on it slowly to avoid the worst withdrawal.

Worsening can be caused by allergy to the supplements. Since starting patients on these regimes, we
have had some who are intolerant of D-ribose (because it is derived from corn and there will be small
amounts of corn antigen in the sugar), Co-enzyme Q10 (some are soya based, some sunflower oil
based so try a different preparation), Acetyl L-carnitine (in which case you have got to eat more
meat!) and sometimes NAD (B3). It is common for people not to tolerate my physiological mix of
minerals (MMMs). However, whatever the problem, the key is to go back to that regime on which
you felt reasonable, then reintroduce things slowly one at a time. Some people do not even tolerate
this which makes it most likely that they suffer from multiple allergy, in which case they are going to
need desensitisation from one of the doctors listed below. For some reason often people with the
worst deficiencies react badly to the very supplements they need. In this case one just has to start
with very tiny amounts and build up slowly.

Problem No. 2 – Your GP will not do the things that are being asked of him/her.
If you need magnesium or B12 by injection or I recommend some other prescribable medication such
as thyroid hormones, then I am very happy to supply you with whatever is necessary. However, I

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have to write to your GP and inform him that I am doing this, so that if he has any reason to
object then he can get in touch with me directly. Should this situation arise, please, let me have your
medical history and/or a completed medical questionnaire (please request from the office – can
be sent to you in the post or by e-mail) and I will write to your GP. (and that letter costs £25).

With magnesium and B12 injections you have two options –


- either you need to find somebody competent, such as a nurse or a private doctor, who will
give you these injections;
- or you need to find somebody competent such as a nurse, a diabetic on insulin, or whatever
to show you how to self-inject.

If a nurse needs a letter from me confirming that I take clinical responsibility for the treatment, then
please ask the office for such a letter (£10). In any event, I need a letter from you stating that
you have such a competent person to assist you with the injections. I can then send you the
magnesium, the B12, the syringes, needles and sharps disposal box to do the necessary.

Problem No. 3 – You get so far with the regime and then you get stuck and stop improving.
Whilst people are improving and continuing to improve (either feeling better, or increasing their
activity levels) then I would not suggest any further intervention. However, if you get stuck then the
first thing to do is to go back to square one and examine how strict your regime is objectively. It is
all too easy to get sloppy, relax the diet too much, become undisciplined about sleep, forget to take
the supplements, not stick to the pacing rules carefully and stop making progress as a result. Getting
better from chronic fatigue syndrome is extremely hard work and takes a huge amount of personal
input. However if you are really stuck at this stage, then this is the point at which you need to
consult another doctor who is listed below.

Indeed I have come to the stage where I need a band of trained advisors who can help interpret these
results to the uninitiated! I shall call this band of trained advisors my barefoot doctors who can
maybe help move things on and point in which direction to go.

What I can and cannot supply you with


My philosophy is to try to supply all my patients with as much information (free on my website) as is
necessary to get them well, together with the best possible value supplements. As a doctor, I am
allowed to supply patients with supplements in a way that cuts out a lot of the red tape and
bureaucracy and therefore makes them very cheap. Once you have sent me a history, questionnaire,
done tests and your GP has received a letter then effectively you become my patient for the
purpose of prescribing only, which allows me to supply you with the necessary in order to get well
– the only downside is that I have to keep your GP informed and there is a cost for such letters.

Practitioners of Ecological (Allergy, Environmental, Nutritional Medicine)

Dr N Avery, Little Dene, 14 Denton Road, Eastbourne, East Sussex, BN20 7SU 01323727474

Dr P Chohan, 24 Ten Shilling Drive, Westwood Heath, Coventry CV4 8GV 02476266370

Dr C Dawkins, The Breakspeare Clinic, Shipton Road, Milton Under Wychwood, Oxon OX7 6JP
01993830913

Dr C J Forsyth, North Cottage, Dovers Green Road, Reigate, Surrey RH2 8BU.
Tel & FAX: 01737 226338 Office e-mail: office@dr-forsyth.com Web: www.dr-forsyth.com

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Dr D Freed, 14 Marston Road, Salford, Manchester M7 4ER 01617956225

Dr N Hembry, Litfield House Medical Centre, 1 Litfield Place, Clifton, Bristol BS8 3SL
Tel: 0117 9692814 info@drhembry.com

Dr P Kingsley, 72 Main Road, Osgathorpe, Loughborough, Leicester Le12 9TA 01530223622

Dr G Lewith, The Centre for Complimentary and Integrated Medicine, 14 Harley House, Brunswick
Place, London NW1 4PR Tel: 020 7935 7848
or: The Centre for Complimentary and Integrated Medicine, Wilton Lodge, 56 Bedford Place, Southampton,
SO15 2DT Tel: 023 8033 4752

Dr Patrick McGovern, 3 Drummartin Road, Goatstown, Dublin 14 Tel: 01 296 5993


Fax: 01 296 6189

Dr J Meldrum, Mulberry House, 13 Inverleigh Road, Edinburgh H3 5LS 01904 691591


and Nutrition Associates, Galtres House, Lysander Close, York YO3 4XB 01904 691591

Dr J Moran Holistic Medical Centre, Wimpole Street, London WIG 8YA 02079354870

Dr P S Mukherji, 66 Pentland Terrace, Braids, Edinburgh EH10 6HE 01314455668

Dr J Nevison, 33 Wedon Way, Bygrave, Baldock, Herts. SG7 5DX 01462894743

Dr J C Roberts, Lancaster and Lakeland Nuffield Hospital, Meadow Side, Lancaster LA1 3RH
01524 62345 CFS/ fatigue states – GP referrals only

Dr Jens Rohrbeck, Bristol – contact e-mail: jensrohrbeck@hotmail.com or Tel. 07803 249 028

Dr B Scheel, 38 Newton Leys, Winshill, Burton on Trent, Staffordshire DE15 0DW 01283516966

Dr J Thompson, 40 Ragstone Road, Slough, Berkshire SL1 2PX 01753775545

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FIRST STAGE: MAKE SURE THE DIAGNOSIS IS RIGHT
Many doctors will tell you that CFS is a diagnosis of exclusion. The key point to remember is that
CFS is a symptom, not a diagnosis, and it is a symptom of poor mitochondrial function. This can be
caused for many reasons and the key is to identify the biochemical lesions which are causing the
problem.

UNDERSTAND: WHAT IS CHRONIC FATIGUE SYNDROME?


I think this is one of the most important handouts I have ever produced in terms of my understanding of CFS
and what to do in order to recover! So please read this very carefully and several times over because for
many sufferers it contains the keys to unlock their illness!

We are made up of lots of different cells – heart, blood, muscle nerve cells etc. All these cells are
different because they all have a different job of work to do. To do this job of work requires energy.
Bu the way in which energy is supplied is the same for every cell in the body. Indeed all animals share
this same system. The mitochondria in my dog, my cat and my horse are exactly the same as mine.
Mitochondria are a common biological unit across the animal kingdom. Energy is supplied to cells by
mitochondria which I think of as little engines which power every cell in the body.

Chronic fatigue syndrome is the symptom caused by mitochondrial failure. The job of mitochondria
is to supply energy in the form of ATP (adenosine triphosphate). This is the universal currency of
energy. It can be used for all sorts of biochemical jobs from muscle contraction to hormone
production. When mitochondria fail, this results in poor supply of ATP, so cells go slow because
they do not have the energy supply to function at a normal speed. This means that all bodily
functions go slow.

Chronic fatigue syndrome therefore is a symptom of mitochondrial failure and every cell in the body
can be affected.

The following cycle illustrates what happens:

ATP (3 phosphates) is converted to ADP (2 phosphates) with the release of energy for work. ADP
passes into the mitochondria where ATP is remade by oxidative phosphorylation (ie a phosphate
group is stuck on). ATP recycles approximately every 10 seconds in a normal person – if this goes
slow, then the cell goes slow and so the person goes slow and clinically has poor stamina ie CFS.

Problems arise when the system is stressed. If the CFS sufferer asks for energy faster than he can
supply it, (and actually most CFS sufferers are doing this most of the time!) ATP is converted to ADP
faster than it can be recycled. This means there is a build up of ADP. Some ADP is inevitably
shunted into adenosine monophosphate (AMP -1 phosphate). But this creates a real problem, indeed
a metabolic disaster, because AMP, largely speaking, cannot be recycled and is lost in urine.

Indeed this is the biological basis of poor stamina. One can only go at the rate at which mitochondria
can produce ATP. If mitochondria go slow, stamina is poor.
If ATP levels drop as a result of leakage of AMP, the body then has to make brand new ATP. ATP can

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be made very quickly from a sugar D-ribose, but D-ribose is only slowly made from glucose (via the
pentose phosphate shunt for those clever biochemists out there!). This takes anything from one to
four days. So this is the biological basis for delayed fatigue.

However there is another problem. If the body is very short of ATP, it can make a very small amount
of ATP directly from glucose by converting it into lactic acid. This is exactly what many CFS
sufferers do and indeed we know that CFS sufferers readily switch into anaerobic metabolism.
However this results in two serious problems – lactic acid quickly builds up especially in muscles to
cause pain, heaviness, aching and soreness (“lactic acid burn”), secondly no glucose is available in
order to make D-ribose! So new ATP cannot be easily made when you are really run down. Recovery
takes days!

The biological basis of treatment is therefore explained:


1. PACE – do not use up energy faster than your mitos can supply it.
2. FEED THE MITOCHONDRIA - supply the raw material necessary for the mitochondria to
heal themselves and work efficiently. This means feeding the mitos correctly so they can heal
and repair.
3. Address the underlying causes as to why mitochondria have been damaged. This must also be
put in place to prevent ongoing damage to mitos. In order of importance this involves:
• Pacing activities to avoid undue stress to mitos
• Getting excellent sleep so mitos can repair
• Excellent nutrition with respect to:
o taking a good range of micronutrient supplements
o stabilising blood sugar levels
o identifying allergies to foods
• Detoxifying to unload heavy metals, pesticides, drugs, social poisons (alcohol,
tobacco etc) and volatile organic compounds, all of which which poison mitos.
• Addressing the common problem of hyperventilation

4. Address the secondary damage caused by mitochondrial failure such as immune disturbances
resulting in allergies and autoimmunity, poor digestive function, hormone gland failure, slow
liver detoxification.

And now for a bit of good news! AMP can be recycled, but slowly. Interestingly, the enzyme which
does this (cyclic AMP) is activated by caffeine! So the perfect pick-me-up for CFS sufferers could be

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a real black organic coffee with a teaspoon of D-ribose!

The Perfect Test for Chronic Fatigue Syndrome


The central problem of chronic fatigue syndrome is mitochondrial failure resulting in poor production
of ATP. ATP is the currency of energy in the body and if the production of this is impaired then all
cellular processes will go slow. It is not good enough to measure absolute levels of ATP in cells
since this will simply reflect how well rested the sufferer is. The perfect test is to measure the rate at
which ATP is recycled in cells and this test has now been developed by John McLaren Howard at
Biolab in London. He calls it “ATP profiles”. It is a test of mitochondrial function.

Not only does this test measure the rate at which ATP is made, it also looks at where the problem
lies. Production of ATP is highly dependent on magnesium status and the first part of the test studies
this aspect.

The second aspect of the test measures the efficiency with which ATP is made from ADP. If this is
abnormal then this could be as a result of magnesium deficiency, of low levels of Co-enzyme Q10,
low levels of vitamin B3 (NAD) or of acetyl L-carnitine.

The third possibility is that the protein which transports ATP and ADP across mitochondrial
membrane is impaired and this is also measured.

The joy of the ATP profiles test is that we now have an objective test of chronic fatigue syndrome
which clearly shows this illness has a physical basis. This test clearly shows that cognitive behaviour
therapy, graded exercise and anti-depressants are irrelevant in addressing the root cause of this
illness.

To get the full picture I recommend combining this test with measuring levels of Co-enzyme Q10,
SODase and NAD (an element in the process of energy production). Cell free DNA is very useful
because it measures severity of the illness. When cells are damaged and die, they release their
contents into the blood stream – cell free DNA measures the extent of this damage. The levels which
come back are similar to those from patients recovering from major infections, trauma, surgery or
chemotherapy – so this test puts CFS firmly in the realms of major organic pathology. SODase is an
important antioxidant which mops up the free radicals produced in all the inefficient chemical
reactions in the cells.

In fact, all five blood tests have now been combined as a MITOCHONDRIAL FUNCTION
PROFILE (which combines the “ATP profiles” and tests of antioxidant levels) and can be ordered
from my practice. To order the test, please send a note with your full name and address, your date of
birth and your GP’s name and address together with your payment (a cheque for £225, i.e. £175 for
the tests and £50 for my letter to your GP, made payable to Sarah Myhill Limited) to my office at
Upper Weston, Llangunllo, Knighton, Powys LD7 1SL and a test kit will be sent out to you. The
price for my letter reflects the fact that the letter effectively gives interpretations of 7 tests.

The two other important co-factors in the production of energy in cells are L-carnitine and D-ribose.
The latter is used up so quickly by cells that measuring levels is unhelpful, but low levels of ATP
imply low levels of D-ribose. I do not know of a test as yet to look at L-carnitine levels, but the
main source of L-carnitine is meat and therefore a high protein diet should supply the necessary. On
days when meat is not consumed, take 2 grams of acetyl L carnitine. Vegetarians should supplement
acetyl L-carnitine (best absorbed form) by taking 2 grams daily.

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CFS is Heart Failure Secondary to Mitochondrial Malfunction
Two papers have come to my notice recently which make great sense of both my clinical
observations and also the idea that CFS is a symptom of mitochondrial failure. The two symptoms I
am looking for in CFS to make the diagnosis is firstly very poor stamina and secondly delayed
fatigue. I think I can now explain these in terms of what is going on inside cells and the effects on
major organs of the body (primarily the heart). More importantly, there are major implications for a
test for CFS and of course management and recovery.

If mitochondria (the little batteries found inside every cell in the body) do not work properly, then
the energy supply to every cell in the body will be impaired. This includes the heart. Many of the
symptoms of CFS could be explained by heart failure because the heart muscle cannot work
properly. Cardiologists and other doctors are used to dealing with heart failure due to poor blood
supply to the heart itself. In CFS the heart failure is caused by poor muscle function and therefore
strictly speaking is a cardiomyopathy. This means the function of the heart will be very abnormal, but
traditional tests of heart failure, such as ECG, ECHOs, angiograms etc, will be normal.

Thanks to work by Dr Arnold Peckerman www.cfids-cab.org/cfs-


inform/Coicfs/peckerman.etal.03.pdf we now know that cardiac output in CFS patients is impaired.
Furthermore the level of impairment correlates very closely to the level of disability in patients. Dr
Peckerman was asked by the US National Institutes of Health to develop a test for CFS in order to
help them to judge the level of disability in patients claiming Social Security benefits. Peckerman is a
cardiologist and on the basis that CFS patients suffer low blood pressure, low blood volume and
perfusion defects, he surmised CFS patients were in heart failure To test this he came up with Q
scores.

“Q” stands for cardiac output in litres per minute and this can be measured using a totally non-
invasive method called Impedence Cardiography. This allows one to accurately measure cardiac
output by measuring the electrical impedence across the chest wall. The greater the blood flow the
less the impedance. This can be adjusted according to chest and body size to produce a reliable
measurement (this is done using a standard algorithm). It is important to do this test when supine and
again in the upright position. This is because cardiac output in healthy people will vary from 7 litres
per min when lying down to 5 litres per min when standing. In healthy people this drop is not enough
to affect function. But in CFS sufferers the drop may be from 5 litres lying down to 3.5 litres
standing up. At this level the sufferer has a cardiac output which causes borderline organ failure.

This explains why CFS patients feel much better lying down. They have acceptable cardiac output
lying down, but standing up they are in borderline heart and organ failure. CFS is therefore the
symptom which prevents the patient developing complete heart failure. Actually, everyone feels more
rested when they are sitting down with their feet up! The subconscious has worked out that the heart
has to work less hard when you are sitting down with your feet up – so we do so because we feel
more comfortable!

Low cardiac output explains the symptoms of CFS


The job of the heart is to maintain blood pressure. If the blood pressure falls, organs start to fail. If
the heart is working inadequately as a pump then the only way blood pressure can be sustained is by
shutting down blood supply to organs. Organs are shut down in terms of priority, i.e. the skin first,
then muscles, followed by liver, gut, brain and finally the heart, lung and kidney. As these organ
systems shut down, this creates further problems for the body in terms of toxic overload,
susceptibility to viruses which damage mitochondria further, thus exacerbating all the problems of
the CFS sufferer.

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1. Effects on the Skin
If you shut down the blood supply to the skin, this has two main effects. The first is that the skin is
responsible for controlling the temperature of the body. This means that CFS patients become
intolerant of heat. If the body gets too hot then it cannot lose heat through the skin (because it has
no blood supply) and the core temperature increases. The only way the body can compensate for
this is by switching off the thyroid gland (which is responsible for the level of metabolic activity in
the body and hence heat generation) and so one gets a compensatory underactive thyroid. This alone
worsens the problems of fatigue.

The second problem is that if the micro-circulation in the skin is shut down, then the body cannot
sweat. This is a major way through which toxins, particularly heavy metals, pesticides and volatile
organic compounds are excreted. Therefore the CFS sufferer’s body is much better at accumulating
toxins, which of course further damage mitochondria.

2. Symptoms in Muscles
If the blood supply to muscles is impaired, then muscles quickly run out of oxygen when one starts
to exercise. With no oxygen in the muscles the cells switch over to anaerobic metabolism, which
produces lactic acid and it is this that makes muscles ache so much.

As well as the above problem, muscles in the CFS patient have very poor stamina because the
mitochondria which supply them with energy are malfunctioning.

3. Symptoms in the Liver and Gut


Poor blood supply to the gut results in inefficient digestion, poor production of digestive juices and
leaky gut syndrome. Leaky gut syndrome causes many other problems such as allergies,
autoimmunity, malabsorption, etc., which further compound the problems of CFS.

If liver circulation is inadequate, this will result in poor detoxification, not just of heavy metals,
pesticides and volatile organic compounds, but also toxins produced as a result of fermentation in the
gut again further poisoning the mitochondria.

4. Effects on the Brain


Last October I attended a conference sponsored by the late Dr John Richardson. A Canadian
physician Dr Byron Hyde showed us some functional scans of the brains of CFS patients. If I had
not known the diagnosis, I would have diagnosed strokes. This is because the blood supply to some
area of the brain was so impaired. The default is temporary and with rest, blood supply recovers.
However, this explains the multiplicity of brain symptoms suffered from, such as poor short term
memory, difficulty multi-tasking, slow mental processing and so on. Furthermore brain cells are not
particularly well stocked with mitochondria and therefore they run out of energy very quickly.

5. Effects on the Heart


There are two effects on the heart. The first effect of poor micro-circulation to the heart is
disturbance of the electrical conductivity which causes dysrhythmias. Many patients with chronic
fatigue syndrome complain of palpitations, missed heart beats or whatever. This is particularly the
case in patients with poisoning by chemicals since the chemicals are also directly toxic to nerve cells.

The second obvious result is poor exercise tolerance. Heart muscle fatigues in just the same way
that other muscles fatigue. Symptomatically this causes chest pain and fatigue. In the longer term it
can cause heart valve defects because the muscles which normally hold the mitral valve open also
fatigue.

13
The difference between this type of heart failure and medically recognised congestive cardiac failure
is that patients with CFS protect themselves from organ failure because of their fatigue symptoms.
Patients with congestive cardiac failure initially do not get fatigue and often present with organ
failures such as kidney failure or overt heart failure. At present I do not know why there is this
difference.

THIS APPROACH TO TREATING HEART DISEASE IS EXACTLY THE SAME REGARDLESS


OF THE CONVENTIONAL DIAGNOSIS. So patients with angina, high blood pressure, heart
failure, cardiomyopathy, some valve defects as well as patients with cardiac dysrhythmias also have
mitochondrial problems and will respond in the same way to nutritional therapies and detox
therapies.

6. Effects on Lung and Kidney


The lung and kidney are relatively protected against poor micro-circulation because they have the
largest renin angiotensin system, which keeps the blood pressure up in these vital organs. Therefore
clinically one does not see patients with kidney failure or pulmonary hypoperfusion in CFS.

Explanation of the Fatigue Problems in CFS Patients.


Energy to the body is supplied by mitochondria, which firstly produce NAD (nicotinamide adenosine
diphosphate) from Kreb’s citric acid cycle and this is used to power oxidative phosphorylation which
generates ATP (adenosine triphosphate). These molecules are the “currency” of energy in the body.
Almost all energy requiring processes in the body have to be “paid for” with NAD and ATP, but
largely ATP. The reserves of ATP in cells are very small. At any one moment in heart muscle cells
there is only enough ATP to last about ten contractions. Thus the mitochondria have to be extremely
good at re-cycling ATP to keep the cell constantly supplied with energy.

If the cell is not very efficient at re-cycling ATP, then the cell runs out of energy very quickly and this
causes the symptoms of weakness and poor stamina. The cell literally has to “hibernate” and wait
until more ATP has been manufactured.

In producing energy, ATP (three phosphates) is converted into ADP (two phosphates) and ADP is re-
cycled back through mitochondria to produce ATP. However, if the cell is pushed (ie stressed) when
there is no ATP about, then it will start to use ADP instead. The body can create energy from ADP
to AMP (one phosphate), but the trouble is that AMP cannot be re-cycled. The only way that ADP
can be regenerated is by making from fresh ingredients, but this takes days to do. This explains the
delayed fatigue seen in chronic fatigue syndrome.

So to summarise, the basic pathology in CFS is slow re-cycling of ATP to ADP and back to ATP
again. If patients push themselves and make more energy demands, then ADP is converted to AMP
which cannot be recycled and it is this which is responsible for the delayed fatigue. This is because
it takes the body several days to make fresh ATP from new ingredients. When patients overdo things
and “hit a brick wall” this is because they have no ATP or ADP to function at all.

Implications for Treatment


The vast majority of patients I see get well with my standard work up with respect to vitamins and
minerals, diet, pacing and sleep. All these things must be put in place to repair and prevent
ongoing damage to mitochondria so allowing them to recover. For mitochondria to recover
they need all the essential vitamins, minerals, essential fatty acids and amino acids to
manufacture the cellular machinery to restore normal function. The mitochondrial function
tests then allow us to identify lesions which can be corrected by attention to nutritional
supplements, improving antioxidant status, detoxing, hyperventilation or whatever. CFS

14
sufferers have limited reserves of physical, mental and emotional energy and this test allows us
to direct those energies into the most fruitful line of approach.

SECOND STAGE: WHAT EVERY CFS SUFFERER MUST DO TO GET WELL. THESE
ARE THE FOUNDATION STONES OF RECOVERY
Observe seven fundamental rules This applies to all CFS sufferers:

REST - 80% rule, pacing, mental and physical rest. Get organised. Accept help. Arrange for
deliveries to house. Delegate work. Prioritise. List the 10 most important things in your life, then
ignore the last five. You can't do everything. Look after your mitochondria!

VITAMINS AND MINERALS - it takes at least 6 months for body stores to replete.
Supplements are for life.

YOU MUST SLEEP - quality sleep is essential to life. Don't be afraid to use tablets to restore
the normal day/night diurnal rhythm. Avoid caffeine after 4pm - it will interfere with sleep

DIET - Do the Diet for CFS. Humans evolved over thousands of years eating a Stoneage diet.
We should all move towards eating such a diet made up of foods of low glycaemic index which
avoids the common allergens (grains, dairy, yeast, artificial food additives). I now also
recommend routine use of DIY probiotics (see later)

TREAT THE MITOCHONDRIAL METABOLIC DYSLEXIA WHICH MANY INCLUDE


SOME OR ALL OF THE FOLLOWING:

DETOX – reduce your chemical load by:


a) Avoiding alcohol, care with caffeine, many prescription drugs (especially statins,
diuretics, beta blockers, antidepressants, Pill and HRT) make CFS much worse. Don’t
take the Pill or HRT– they worsen CFS in the long term and certainly predispose to
getting CFS because they suppress the immune system and induce nutritional deficiencies.
Many IUCDs (coils) also contain hormones. Depot injections are the worst!
b) Do a good chemical clean up of your environment – throw out all the smellies in your
house, keep the house well ventilated, avoid sprays, polishes, aerosols, new paints, new
carpets, gas cookers and heaters
c) Consider detoxing with a sweating regime such as FIR. Sweating gets rid of all toxins –
heavy metals, pesticides and volatile organic compounds but it is important to rehydrate
with beneficial minerals since these too are lost in sweat.

AVOID INFECTIONS whenever possible


a) Do not permit visitors who have a cold!
b) At the first sign of a cough, cold or sore throat use high dose micronutrient such as vitamin A
(not if pregnant), vitamin C, zinc, selenium and propolis. Don’t be afraid to take high dose
vitamin C to bowel tolerance – if you take too much the worst that can happen is diarrhoea. I
need 10-20 grams in 2 hours to stop a cold. You may need more. With infections your need
and your tolerance of vitamin C increases markedly.
c) Consider heat and sweating to get rid of viruses – they are quite temperature sensitive!

THIRD STAGE – BUILDING ON THE FOUNDATIONS:


TACKLING SPECIFIC PROBLEMS
FIRST GET THE REGIME TIGHT. THEN FEEL WELL DOING VERY LITTLE. THEN

15
GRADUALLY INCREASE ACTIVITY SO LONG AS YOU CONTINUE TO FEEL WELL (by
which I mean no loss of stamina or delayed fatigue). Feeling ill results from useless inflammation in
the body causing a high cell free DNA which has the potential to switch on allergies and/or
autoimmunity. Feeling ill can make you more ill.

Do the other things which address the mitochondrial dysfunction such as B12 injections, magnesium
injections/nebuliser, thyroid supplements etc. Do as many of these things at the same time as you can.
By the time you have been ill for several years, more than one thing will be wrong – you need to
tackle them all at the same time to see improvement. The priority is to get well. Once you are better,
these things can be knocked off , (ie the regime can be relaxed), one at a time to find out which is
important. In order of importance:

ANTIOXIDANT STATUS. The cell free DNA (part of the mitochondrial testing) is a measure of
damage to cells which may be caused by poor antioxidant status. The important antioxidants to
consider are:
superoxide dismutase (there are two forms – one dependent on zinc/copper, one on manganese),
co enzyme Q 10 (most important inside mitochondria) and
glutathione peroxidase.

If these levels are poor then it is well worth using B12 by injection. B12 works well clinically
because it instantly improves anti-oxidant status and takes over the function of some of the other
antioxidants which may be failing. Don’t waste money measuring B12 levels – that is irrelevant – it is
the response to injections which is important. Make sure you are on a multivitamin containing folic
acid when you have injections. There are many other molecules which also have antioxidant function
such as:
• NAD levels (part of CFS profile)
• Acetyl L carnitine
• Melatonin (another reason to get a good night’s sleep!)
• High dose vitamin C helps to recycle all the above antioxidants. Our physiological
requirements are probably for 2-4grams daily.

Many foods contain natural antioxidants such as vegetables, nuts and seeds – tuck in!

COMMON HORMONAL PROBLEMS:


Underactive thyroid
Adrenal gland insufficiency (DHEA and cortisol)
Human Growth hormone

FOOD ALLERGIES – if you have a long symptom list you are likely to be allergic. Consider
either a single food meal diet (such as five meals a day made up of single foods) or even a
rotation diet or a rare foods diet (chose 10 foods rarely consumed and eat nothing but for
two weeks). About one in ten patients who see me with CFS end up needing desensitisation
for multiple allergies. Indeed it is allergy which most commonly messes things up because
sufferers do not tolerate the interventions necessary to get well.
Tests for food allergies are notoriously unreliable and at present there are no particular tests
that I would recommend. The only reliable test is neutralisation/provocation – see
www.ecomed.org.uk for practitioners.

GUT DYSBIOSIS (wrong bugs in the gut). Getting gut symptoms right is central to getting
the CFS right. Consider:

16
• fungal type dysbiosis (candida),
• bacterial type gut dysbiosis, helicobacter pylori,
• gut parasites (eg symptoms following travel abroad).

Or a combination of these three.


All can be improved by high dose viable probiotics and the most efficient way to tackle this is
by DIY home cultures (see later).
Poor digestion can also be caused by enzyme or hydrochloric acid deficiency. Some people
do well with food combining – at any one meal they eat either carbohydrate or protein, but
not together.

HYPERVENTILATION can cause fatigue. Indeed it is almost an inevitable part of CFS that
one ends up with a hyperventilation problem. By night hyperventilation causes vivid dreams
and non-restorative sleep. It is often driven by hypoglycaemia, food intolerance, gut
dysbiosis, low magnesium levels and stress. Can certainly be helped by breathing retraining.

AUTOMMUNE PROBLEMS. One of the risks of running a high cell free DNA is that the
cellular debris swilling around in the blood stream may switch on an antibody response. If
you are unlucky this could result in autoimmunity because by chance, the antibodies against
the cellular debris cross react with one’s own tissues. This is a good reason to feel well –
feeling ill (malaise) is caused by high cell free DNA and may switch on allergy and
autoimmunity. I.e. this is a disease amplifying problem – something you can do without!
Autoimmunity may also be switched on by leaky gut in which large antigenically interesting
molecules leak into the bloodstream where they may inducean antibody response.

PSYCHOLOGICAL ASPECTS OF TREATING CFS. The personality who gets CFS is the
high achieving, workaholic, goal seeking, perfectionist. These people continue to work at the
expense of their health. In order to work longer hours and achieve they eat junk food, are
natural addicts (sugar, carbs, caffeine, alcohol, nicotine), miss sleep, don’t rest when they are
tired and don’t take time off when they are ill. To recover from CFS they have to let go of
this personality – this means making fundamental changes, which are not easy. If they do not
let go, once improved, they simply put back all the things which caused them to get CFS is
the first place and simply relapse back into CFS.

Most CFS patients are not depressed, just pissed off and frustrated that they cannot do more.
The difference between CFS and depression is that in CFS the desire is there but the
performance is lacking. In depression there is no desire, but if the depressed sufferer is kicked
into exercise they often feel much better for it.

The basis of cognitive behaviour therapy (CBT) is that the patient is “frightened” to exercise
because that exercise will make the patient worse and that “fear” has to be addressed. During
the acute phase, when the physical causes have not been addressed, the patient is right! The
trouble is that they are often not believed by their doctors! This is where the mitochondrial
function test is useful because it gives an objective measure of disability either by a poor
mitochondrial function score or high cell free DNA showing cell damage or both. CBT is
only relevant in the recovery stages once all the underlying physical problems have been
addressed and the patient can exercise without becoming ill. At this stage it is not unusual for
anxiety to become the rate limiting step – actually the patient can exercise but is so
conditioned that he dare not, almost amounting to agoraphobia. This anxiety is often caused
by hyperventilation and hypoglycaemia. Psychotherapy and tranquillisers can sometimes help

17
get over these psychological blocks.

Use of anti-depressant medications.

TACKLE TOXIC PROBLEMS – the commonest problems are:


mercury in dental amalgam as a cause of fatigue is not unusual. Test for with a Kelmer test
which measures mercury levels in urine before and after taking a chelating agent
pesticide levels – easily tested for by fat biopsy (easier than a blood test)
volatile organic compounds – again fat biopsy
heavy metals – a hair analysis or sweat test can be helpful. Nickel seems to come up very
frequently as a problem.

Other useful tests for toxicity problems:


Mitochondrial function tests often show blockage of translocator proteins which often results
from toxic stress. This can now be investigated as a separate test.
Toxic effects screen – a very sensitive test of liver function – tells us if the liver is being
stressed by a toxic load
Lymphocyte sensitivity test – looks to see if white cells are adversely affected by chemicals
DNA adducts – looks to see if chemicals or heavy metals are stuck onto DNA – this is a pre-
cancerous condition.
Detoxification screen – looks at how efficiently the liver detoxifies chemicals

CHRONIC LOW GRADE INFECTIONS – this is difficult because the tests are no reliable
and often one has to resort to a trial of antibiotics. Antibiotics are a two edged sword because
of the risk of flaring a yeast problem! Mycoplasma (Lymes disease) may be much more
common than is believed but I do not know how to diagnose it reliably nor treat it reliably. .

PAIN CONTROL – pain, like fatigue, is just a symptom of something going wrong and one
should try to work out the cause. The commonest issues are:
General pain: Failure to pace activity properly!
Low pain threshold is a feature of CFS
Muscle pain (limbs, trunk or chest pain) – see new section on muscle pain
Trapped Nerves – think of osteoporosis
Useless inflammations (poor antioxidant status, auto-immunity)

FOURTH STAGE – WHEN YOU ARE STILL STUCK!


EITHER MULTIPLE ALLERGY OR UNUSUAL ALLERGIES
At this stage I consider the possibility that there is something in your house, or the environment
in which you live which is making you ill. The two major players are moulds and chemicals.
Ideally I would put you into an environmental unit which was free from chemicals and moulds,
but the last unit in UK (the Airedale Allergy Centre in patient unit) closed when “fund holding”
stopped. The next best thing is to move to a hot dry climate for at least 2 weeks – preferably
longer. These climates, such as the Mediterranean, are free from most chemicals simply because
most houses are contaminated as a result of heat saving measures (central heating, carpets, cavity
wall insulation, double glazing etc). Furthermore where the humidity is below 40% no moulds
can survive. Neutralisation/provocation can be useful to diagnose mould allergy.

Other clues that the environment is a problem:


Feel better away on holiday
Feel better out of doors

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Feel better in the summer than the winter (no central heating, windows open)
Feel better at the Coast (where prevailing winds are on-shore and so free from moulds and
pollution)
Feel better for environmental clean up – getting rid of smellies and chemicals in the house,
avoiding cosmetics, eating organic food, air filtration system, dehumidifier. The Healthy House
has an excellent range of products to help you do this – tel 01453 752216 fax 01453 753533.

Some of my patients have to move house in order to recover – this is especially true if they live
near polluting industry, pesticide spray drift, near a busy road, in a damp area.

Get mould allergy tested – either by skin tests (reasonably reliable but skin scratch tests unhelpful
– must do this by intradermal injection i.e. neutralisation) or by going abroad to a warm dry
climate ideally for one month, but two weeks may give you an idea. Make sure that place is
chemically clean – not easy. Reduce moulds in the environment with a dehumidifier – measure
humidity – get down to below 40%
MCS - Multiple chemical sensitivity - Suspect if symptoms better out of doors, better in the
summer, better away on holiday. Do chemical clean up. Eat organic where possible. Check with
the QEESI questionnaire. Test by lymphocyte sensitivity testing.
Consider desensitisation such as neutralisation or my preferred technique enzyme potentiated
desensitisation (EPD) for foods and possibly chemicals. EPD does not work so well for mould
allergy.
For severe mould and/or chemical sensitivity the only answer may be to move to a hot dry
climate.

FIFTH STAGE – WEIRD AND WONDERFULS


• Healing - Local healers can be found from 0845 1232767 (local rate line). Consider Healing with
Seka Nikolic - expensive but effective. Contact either the Tailesh Centre of Oriental Medicine, 7
New Court Street, London NW8 7AA, tel: 0207 722 3939 or The Hale Clinic, Park Crescent
(just off the Marylebone Road), London, tel. 0207 637 337
• Geopathic stress is sometimes important
• Guaifenesin – may be worth a try if fibromyalgia is the main problem but I have to say I have not
seen any great benefits so far.
• Electromagnetic sensitivity. This clearly is a problem for some people. They become sensitive to
EM radiation such as computers, TVs, fluorescent lights, mobile phone etc. Nearly always sit co-
exists with multiple chemical sensitivity. The only treatment I am aware of is avoidance. Not easy
in the 21st Century!

Everybody gets better from CFS in a different way - always a combination of the above.
Tackle your illness from every angle you can. Always have a plan. Always keep a light at
the end of the tunnel. Keep talking with other sufferers - they will give you ideas and
inspiration.

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PART TWO – THE FIVE STAGES OF RECOVERY IN DETAIL

FIRST STAGE – MAKE SURE THE DIAGNOSIS IS RIGHT


THE DIFFERENTIAL DIAGNOSIS OF CFS
I see CFS as a symptom which may have many causes. The two key symptoms which I believe
reflect mitochondrial dysfunction are:
very poor stamina (mental and physical) – ie you can do things, but only for about 5 seconds
before tiring. This is due to slow recycling of ATP.
delayed fatigue (mental and physical) – ie symptoms persist for 24-96 hours if you over-do things.
This is because when mitochondria are stressed, all the energy molecules (ATP, ADP and AMP) are
drained out and cells have to wait 1-4 days for new energy molecules to be made via the pentose
phosphate shunt. These two symptoms are central to the diagnosis of CFS. The mental fatigue
manifests as poor short term memory, inability to follow a line of argument, difficulty reading or
watching TV, poor problem solving ability, difficulty dealing with more than one thing at a time –
what I call foggy brain. As one of my patients put it – nothing right in my left brain, nothing left in
my right brain!

In additions to the above, there are common symptoms present in many cases which are worse when
the patient overdoes things such as:
malaise (ie a feeling of illness) – this is caused by damage to tissues when the sufferer overdoes
things. In tests this is reflected by a high cell free DNA - a measure of tissue damage.
muscle pain - ditto – also caused by poor antioxidant status, early switch into anaerobic metabolism,
or magnesium deficiency
muscle weakness (including the muscles in the eyes giving episodic, variable, blurring of vision),
sleep disturbance (whereby the “biological clock” is moved on 4-6 hours and CFSs drop off to sleep
late and wake late). CFS Sufferers are natural owls.
tendency to get recurrent infections,
a general hypersensitivity to noise, light, touch, pain, smells etc
alcohol intolerance – a small drink gives a big hangover. Indeed intolerance of many drugs such as
antidepressants, beta blockers, statins and others. This may reflect poor detoxification pathways.
feeling of “not being with it”
poor temperature control
irritable bowel,
headache,
mood swings

There are usually few physical signs. Sometimes there are tender trigger points in muscles and
tendons, sometimes signs of chronic infection such as swollen tender lymph nodes in the neck of low
grade fever. However often there are no abnormalities on physical examination – indeed the patient
may look well.

Depression is not part of CFS but can arise in any patient who has been chronically ill with “no light
at the end of the tunnel”. The main cause of depression in CFS patients is bad treatment by their
physicians. It appals me that so many physicians are able to send their patients away with no
coherent sensible management plan or glimmer of hope for the future.

Blood tests merely serve to exclude other diagnoses - there is no simple test currently available to
diagnose CFS - BECAUSE CFS IS NOT A DIAGNOSIS, IT IS A SYMPTOM. However I now
believe CFS is very often a symptom of mitochondrial failure. This means when other causes have

20
been excluded (lack of sleep, allergy, hormonal etc) we now have a definitive test which can tell us
how disabled that person is, where the biochemical lesion lies and what has to be put in place to
correct it. Doctors can sometimes be very naughty – they do the “tests” which then all come back as
normal – then turn round and tell their patient that nothing is wrong with them.

I believe that the reason so many medical tests are negative is because doctors are looking in the
wrong place. The pathology is inside cells, ie in mitochondria. Although cells (and therefore organs)
look fine, they do not function properly. It is a bit like having a car with a flat battery – an MRI scan
of a car would come back completely normal – but you try and start it and nothing would work!

I have come to the view that CFS is simply a description of a group of symptoms with several
causes, of which more than one may be present in any individual. Most patients present with CFS
following a viral infection and therefore it has been assumed that viral infections cause CFS. I don't
believe this is entirely right. I think people are predisposed to getting CFS partly through genetic
factors and partly by the way they live their lives. A viral infection just happens to be a powerful
stress or trigger, i.e “the last straw”, which tips them into CFS. I am increasingly seeing patients with
CFS following exposure to toxic chemicals such as organophosphates, other pesticides, carbon
monoxide, silicone breast implants and other such toxic chemicals. It is no coincidence that the
increasing incidence of CFS parallels rising environmental pollution. I suspect that toxic chemicals
damage the immune system so that it is unable to deal adequately with viral infections leading to a
CFS.

This is the picture I have of CFS:

Chronic fatigue syndrome is a symptom of mitochondrial malfunction. This may occur for many
reasons:
Major infection
An adaptive response to overwhelming insult
Direct damage by viral stress or toxic stress (pesticides, carbon mon-oxide, heavy metals, volatile
organic compounds, silicones etc).
Inability to resist toxic or viral stress because of poor antioxidant status
Nutritional deficiencies
The natural ageing process (which damages mitochondrial DNA)

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INFECTIOUS DAMAGE ADAPTIVE RESPONSE TO TOXIC DAMAGE
eg pesticides,
Eg viral flu, EB virus OVERWHELMING STRESS heavy metals, CO,
silicone, VOCs
Eg work, loss of sleep, emotional stress
Physical stress, mental stress

POOR ANTIOXIDANT STATUS


MITOCHONDRIAL MALFUNCTION
↓ ↓

POOR STAMINA DELAYED FATIGUE


The two symptoms without which one cannot diagnose CFS:

POOR STAMINA – functional mitochondrial failure – ie the engine goes slow

DELAYED FATIGUE – structural and/or functional damage to mitochondria if they are stressed
requiring days for recovery and/or repair

In some respects the body is not very clever. It can only respond to noxious things in one way, that is
with inflammation. It is inflammation which releases cytokines, interferons, leukotrienes,
prostaglandins etc which causes symptoms. It is not the virus which causes symptoms in ‘flu – it is
the body’s reaction to that virus which makes you feel ill. Sometimes the body’s reaction does more
damage than the original insult! This is particularly true of EB virus, silicone poisoning,
autoimmunity and allergy reactions.

Since inflammation results from infection (viral, bacterial or fungal), from allergy, from toxic stress,
from cancer, from physical damage (trauma, heat cold) etc, it is almost impossible to work out the
cause of the inflammation from physical symptoms and signs. A good history of how the illness
developed and the chronology is essential to elucidate the underlying causes.

REMEMBER CFS IS A SYMPTOM. CFS DOES NOT CAUSE ANYTHING – SOMETHING


CAUSES CFS AND ALL THE OTHER SYMPTOMS

USEFUL TESTS FOR INVESTIGATING THE PATIENT WHO PRESENTS WITH


CHRONIC FATIGUE
One of the things I really dislike about the Medical Profession is their power over patients. The main
two ways in which they have power is firstly availability of tests and secondly power of prescription.
My website www.drmyhill.co.uk allows patients to order any test they see fit, the result comes to
me, I can interpret it and write to their GP with recommendations (copy to patient). Secondly, nearly
all my treatments do not require prescription drugs and so are available to all. I can also recommend
a local ecologically trained physician who can advise if necessary.

1. Firstly exclude macroscopical pathology.


Most patients, by the time they get to see me, have had all the routine tests done. These tests just test
for macroscopic pathology such as major organ failure (anaemia, heart disease, cancer, liver failure,

22
kidney failure and some gut problems). They do not test for minor organ failures (such as partial
thyroid gland failure, partial adrenal gland failure, mild liver damage, poor ability to detox), neither
do they included detailed tests of immune function. None of these tests look for poor function of the
brain or brain damage, nutritional tests are often absent or limited, hormone tests are usually
incomplete and there are no tests of micropathological function.

Having said that, there are often mild abnormalities in standard tests which have not been picked up
on but which are clinically important for the CFS sufferer.

The basic tests that most doctors do for their patients with chronic fatigue are:

Haematology (full blood count – red cells, white cells and platelets)
Biochemistry (liver and kidney function)
Blood sugar level
Urine testing (for infection or kidney damage)
Faecal occult bloods (looking for bleeding from the gut)
Thyroid stimulating hormone (only looks for primary thyroid failure – most thyroid problems in CFS
are secondary to poor pituitary function)
Ferritin (iron), B12, folic acid and calcium
Perhaps a serum magnesium – which is a completely useless test!
Autoantibody tests for autoimmunity.

Results are given by a figure and there should also be a normal range next to this figure – that tells
you if you are inside or outside the normal range.

The mild abnormalities I always look for in CFS in the above tests are:

Low or low normal white cell count – can be a sign of poor immune function
Low or low normal platelet count – can be a sign of toxic stress
Low MCV (mean corpuscular volume) suggesting iron or copper deficiency.
High MCV suggesting B12, folic acid or thyroid deficiency
A high blood sugar or a low blood sugar suggests there may be a hypoglycaemic tendency or pre-
diabetic tendency. A normal blood sugar tells you very little!
High normal bilirubin – may be Gilbert’s syndrome suggesting poor ability to detoxify.
High normal or abnormal liver enzymes – suggesting liver damage
High urea or creatinine suggesting dehydration
Low urea or creatinine suggesting low protein diet
A TSH tells you very little about thyroid status.

The routine tests which I always do initially and which have important implications for management
are:
1. CFS biochemical profile – diagnoses CFS and has important implication for treatment; this test
includes:
• Mitochondrial function test – looks at levels of ATP, how well energy is released from
ATP, the rate of production of ATP from ADP and movement of ATP and ADP across
mitochondrial membranes (translocator protein function - could be blocked by toxins
or pH changes). Also gives us an objective measure of the level of disability.
• Plasma cell free DNA – a measurement of cell damage and antioxidant status in CFS
• Red cell NAD levels – a measure of the efficiency of Kreb’s citric acid cycle. Levels
can be corrected with niacinamide 500mgs daily and acetyl L carnitine.

23
• Co-enzyme Q 10 levels - this needs testing because it is an expensive supplement and
there is no point in taking it if levels are normal.
• Superoxide dismutase – a major antioxidant in all cells
• Red cell magnesium – done as part of the ATP profile or can be done separately
2. Free T4 and free T3 and TSH (thyroid function).

More esoteric tests which have implications for management:


Further tests of antioxidant status – glutathione peroxidase
Further investigation of poor translocator protein function
Adrenal stress profile – salivary levels of cortisol and DHEA over 24 hours
Salivary melatonin levels – it is common to get poor melatonin production and therefore poor sleep
in CFS. This is a further reflection of the inadequate HPA axis in CFS.

Is your nutritional Supplement Regime sufficient?


B vitamin profile
Red cell Mg
SODase and GTPx (functional tests of Cu, Mn, Zn and Se)
Essential fatty acids
Vitamins A, C and E
Vitamin D3 levels (but very expensive!)

When symptoms suggest tests:


Gut fermentation test – to look for evidence of fermentation by bacteria or yeast. Irritable bowel
syndrome may be caused by food allergy or gut dysbiosis. Low levels of short chain fatty acids can
mean insufficient probiotics in the gut.
Parasitology at the London School of Hygiene and Tropical Medicine – detects worms, amoebae,
giardia, blastocystis hominis.
Comprehensive Digestive Stool analysis – ability to digest and gut flora. Parasitology can also be
done.
Gut permeability test (urine test) – I do not often do this test simply because so many things cause
leaky gut. But it is useful in autoimmunity where leaky gut may be the underlying trigger.

Liver problems – toxic effects screen – to see if the liver is under toxic stress
- detox screen – to see how efficiently the liver can get rid of chemicals

Chronic infections – viral antibody levels to exclude hepatitis and HIV,


Tests to exclude Lyme’s disease (borrelia) (tests done in USA) – but not
reliable

Looking for Toxic Stress


Fat biopsy for pesticides
Fat biopsy for volatile organic compounds A fat biopsy is very easy to do – easier than a blood test!
A green needle and 10ml syringe is used – the green needle is pushed into buttock fat, suction
applied with the syringe, then withdrawn. The amount of fat inside the bore of the needle is sufficient
to do the test.
Sauna sweat test
Kelmer test (urine test) for mercury load – anybody with mercury fillings will have mercury on board
– the question is how much?

24
Toxic effects screen (see above) – evidence of liver overload

Looking for Sensitivity to Chemicals


Lymphocyte sensitivity test for chemicals, heavy metals, silicones, VOCs or whatever. This is helpful
if you suspect sensitivity to chemicals. I often use this where there is a silicone implant to help decide
if it should be removed.

Evidence of Damage to Cells


Plasma cell free DNA – this is nearly always abnormal in CFS and can be for any one of the
following reasons:
a) There is poor antioxidant status (see Co Q 10, SODase),
b) There is ongoing toxic stress (such as from pesticides, volatile organic compounds, heavy
metals etc),
c) There is immune activation (as for example in acute infection),
d) There is very poor mitochondrial function (see mitochondrial function) score but the
patient is forced to do some muscular activity just in order to live.
e) The patient is not pacing well – i.e. pushing too hard and this is resulting in cell damage.
However some people who are very disabled have no choice – just the energy required to
exist will cause tissue damage. So people with the worst mitochondrial function score
often have high cell free DNAs even though they are doing almost nothing.

DNA adducts – looks to see if toxins have stuck onto DNA – if so, this is a pre-cancerous condition.
This is a useful test to work out how much damage has been done to the body as a result of toxic
stress and therefore how much work has to be put into a detox regime. If abnormal then it should be
repeated following a detox regime to make sure there are improvements.

Tests not worth doing either because the result is worthless or the test is unreliable:
Tests for food allergy – at best these are 70% accurate.
B12 – occasionally picks up pernicious anaemia, but regardless of the level I almost routinely
prescribe injections to improve fatigue syndromes. B12 provides “instant” antioxidant cover. It has
no toxicity.
Hair analysis – does not reliably detect heavy metal toxicity and can be very misleading with trace
elements. Useless for allergies.

There is no point doing a test unless it has implications for management – either one needs the test to
make the diagnosis or to determine management options. Always ask this question when requesting a
test or it is money wasted!
Tests ask very specific questions – there are literally hundreds of tests available, it is a case of picking
the right one dependent on the symptoms and signs. If your doctor does not ask the right questions
with his tests, then the results will be normal.

Where there are symptoms pertaining to a specific area such as the gut, tests need to be done to
exclude ulcer disease, gall bladder disease, cancer and so on.

In CFS the problem is micro-pathology (intracellular, immune and biochemical problems),ie


problems inside cells and on cell membranes. This is why standard medical tests do not come up
with abnormalities.

How Long Before I Recover?


Everybody asks me this question! The key point is that CFS is a symptom and once you can identify
the underlying causes and correct these and allow time for recovery then you will improve. If you do

25
not then it is back to the drawing board. It also depends how you define recovery. If you mean that
you want to get back to how you were before the illness struck, then the answer is probably never.
This is because you will simply set up the same conditions which made you ill in the first place.

People who get better from CFS are those who are prepared to make changes. These changes are
often painful - changes to diet, personal relations, jobs, attitudes, desires, living environment and so
on. If you are not prepared to make changes, recovery is unlikely.

Most CFS sufferers come to me hating themselves. They hate themselves because they can't function
as they used to. People have to learn to love themselves as they are, and to be grateful to the illness
for allowing them to make changes that make them better people to be with. The people who are
best at making such changes get better fastest.

Having said all that, how quickly one gets better depends on what it is that is making you ill. I have
some patients who improve simply by taking supplements, or by sleeping better, or by eliminating
certain foods from their diet. Usually however it is a combination of these factors. It seems to me
that everybody seems to get better in a different way and I am constantly being surprised! This is part
of the fascination of treating CFS!

I am painfully aware that having CFS usually prevents one from earning a living. Therefore the
treatments I suggest start off with the “cheap and cheerfuls” and progress onto those which are more
expensive or difficult. This is the reason why I put EPD right at the end – because it is time
consuming and expensive. However in my NHS practice I used to start on EPD soon because the
treatment was free and allergy so often gets in the way of recovery. It is possible for your GP to
prescribe EPD. Furthermore increasingly I have patients referred to me by their GP but funded by
their Primary Care Trust – ask your GP if he is prepared to make such a recommendation. GPs are
the gatekeepers to all benefits within the NHS.

Expense of treatments always must be taken into account when thinking about alternative treatments
– I have seen many patients who have spent large amounts of money on untested treatments.

The pattern of recovery is first to get the regime as tight as possible with respect to pacing, sleep,
diet, supplements, hormones, detoxing, hyperventilation, desensitisation and so on. Then I like to see
people feeling fine at rest. THEN wait until one feels consistently well at rest, ONLY THEN dare
one try a gentle graded activity programme. However if during the course of this symptoms recur, or
there is delayed fatigue then one must reduce activity accordingly. Most people come to see me
“booming and busting” which is a recipe for disaster.

Dealing With Doctors


There are very few doctors who recognise that CFS exists, of those only a minority actually
understand the devastating nature of the illness and a very few of those have any idea how to treat it.
Unfortunately the view of the psychiatric field headed by Simon Wessely (who has achieved this by
endlessly quoting his own studies and ignoring those which do not accord with his thinking) prevails,
which is that all you need to do is give a few antidepressants, cognitive behaviour therapy, graded
exercise and bingo – a cure is round the corner. The psychiatric key to getting these results is make
the patients exercise at the expense of all other activity, then don’t follow them up long enough to
see the relapse. Indeed this is the view supported by Government, Insurance and Pension schemes
who would find it impossible to properly fund the correct treatment of CFS. The irony is that some
short term investment in the correct early recognition and treatment of would result in huge long
term savings!

26
So do not expect any miracles from your GP. The problem is that the GP is the gatekeeper to all
NHS services, benefits, social support etc, so you need him on your side. With a fully co-operative
GP and this book, you can do almost everything which I can offer. A list of practitioners available
from www.ecomed.org.uk

Most doctors do not distinguish, indeed do not want to distinguish, between fatigue and frustration
vs sadness and depression. If you burst into tears with frustration at the total lack of understanding
that merely reinforces the universal diagnosis of depression. Nearly all CFS patients react adversely
to “normal” doses of antidepressants and so they stop them. This is then used as evidence of lack of
co-operation in a difficult patient. Indeed, it is this “battle of belief” which has to be waged at every
doctor-patient meeting which is so exhausting for CFS sufferers.
Because doctors do not diagnose any more, i.e. they do not look for causes of ill health, they will be
unsympathetic to possible toxic causes of CFS. They receive virtually no training in nutrition at
medical school so expect no help here. Most of them do not accept that food allergy exists, which
makes desensitisation seem daft to them. Most have no idea of the many functions of magnesium but
on the basis of complete ignorance will tell you that magnesium injections are dangerous. Because
they only use B12 for preventing pernicious anaemia, you will be told that 2mgs a week is an
overdose. They do not realise the huge potential of B12 as an instant antioxidant. Because they are
used to diagnosing hypothyroidism on a TSH they will refuse to do a T4. If your GP tells you that he
wants to consult with colleagues before sanctioning a treatment, then the battle is already lost.

They will ask for evidence of success for these treatments. However the best results come from a
package of treatment which includes all the above factors. Such a package is not amenable to the
traditional method of assessing treatments, namely the placebo controlled double blind trial (perfectly
suited of course to testing drugs and considered the only truly “scientific” method). However one
doctor, Dr Teitelbaum has researched this package of treatment. Although he and I have never met
or corresponded (except indirectly) the package of treatment he offers his patients is remarkably
similar to mine – namely diet, nutritional supplements, pacing, attention to sleep, correction of
hormone levels, probiotics etc. By following up a group of patients with this active treatment
comparing them to a placebo group (counselling only) he has clearly shown substantial
improvements due to these physical interventions.
The only trial which, to my mind is relevant, is patient improvement. My patients get better and this
is why I currently have a six month waiting list for new patients.
Doctors argue endlessly about what we should call CFS. There are lots of other names: myalgic
encephalitis, fibromyalgia, post viral syndrome, neurasthenia. These are not really diagnoses, simply
descriptions of clinical patterns. Whilst the experts argue about names I am only interested in getting
sufferers better. CFS is not a diagnosis but a symptom which may have many causes. The name of
the game is to work out the underlying cause. The problem with Western Medicine is that doctors do
not diagnose any more. They treat symptoms with symptom suppressing drugs instead of getting to
the root cause of disease. This arises as a result of original thinking in medicine being driven by the
pharmaceutical companies. The best policy for drug company profits is to have a population of sick
people requiring medication for life – so never diagnose and cure – that’s bad for business. The
multinational pharmaceuticals dictate to the doctors, medical journals and government and treatment
guidelines are set up accordingly.
THE KEY FACTOR IS TO REMEMBER THAT CFS IS A SYMPTOM NOT A DIAGNOSIS AND
A GOOD HISTORY COMBINED WITH THE TESTS AVAILABLE CAN TELL US WHERE
THE BIOCHEMICAL PROBLEMS LIE.
However if you do have a doctor who is willing to learn, then the scientific background to this work

27
can be found in:
Environmental Medicine in Clinical Practice, price £43 available from the British Society for Allergy,
Environmental and Nutritional Medicine (BSAENM), now renamed the British Soc for Ecological
Medicine (BSEM) PO Box 7, Knighton LD7 1WT; Tel 0906 3020010 (premium line 50p per
minute)
Effective Allergy Practice cost £5
Effective Nutritional Medicine cost £5
Multiple Chemical Sensitivity cost £10
The Journal of Environmental and Nutritional Medicine
Clinical Pearls – this monthly paper goes through the world literature pertaining to nutrition – makes
for excellent reading.
If a medical practitioner wishes to join the BSEM, which gives easy and cheap access to these
publications, please telephone the above number and ask to speak to Sue Price.
The Website address is www.ecomed.org.uk
This also has a list of doctors who practice Ecological Medicine.

THIS CFS BOOK IS FREE ON LINE TO ANYONE – SIMPLY EMAIL MY OFFICE AND I
WILL SEND YOU A COPY. IT IS TOO BIG TO FIT ON MY WEBSITE!

28
SECOND STAGE: WHAT EVERY CFS SUFFERER MUST DO TO GET
WELL. THESE ARE THE FOUNDATION STONES OF RECOVERY
First of all you have to learn to rest properly and pace yourself. Biochemically this means looking
after your mitos and not draining them completely! Most importantly if you do increase your activity
so that you get symptoms of say, muscle pain, remember this muscle pain is caused by tissue damage.
This may be reflected in the CFS profile testing by high cell free DNA result and/or poor antioxidant
status. If you damage tissues this causes problems for at least two reasons – firstly energy is required
for healing and repair, secondly we get cell debris in the blood stream which may activate the
immune system into making antibodies against this cell debris. This has the potential to switch on
allergies and autoimmunity. So a high cell free DNA, or symptoms when you strive are a disease
amplifying effect! Indeed I often see this clinically – after their acute flu, people push themselves
back to work far too soon even when they are feeling awful They can cope for a while but then hit a
brick wall at anything from 2-6 months after and crash completely.

Rest and Pacing


Rest is the single most important factor in allowing CFS sufferers (CFSs) to get better. An invariable
feature of the history is that exercise (either mental, physical or emotional) makes the symptoms
worse. Indeed this distinguishes CFS from depression - exercise tends to improve people who are
simply depressed. In CFS the desire is there but the performance lacking. However, all CFSs tend to
push themselves to their particular limit every day and therefore do not give themselves a chance to
get better. This means they have one day doing as much as possible, then three days to recover.
Whilst you are on this roller coaster ride of activity and dives, you cannot hope to improve overall.
Energy has to be carefully rationed so that every day is about the same. This is the most difficult
aspect of treating CFS because this is the very personality that makes people get CFS in the first
place.

We now know why CFSs get delayed fatigue – it is because when they use up energy (ATP) faster
than they can make it, there is a build up of ADP. Some is shunted into AMP, which is only recycled
very slowly, if at all. Cells have to make brand new de novo ATP from D-ribose, but this only
happens very slowly, 1-4 days. In the meantime, cells can get a small amount of ATP directly from
glucose via anaerobic metabolism, but this produces lactic acid, which causes many of the muscle
symptoms.

Most CFSs compare themselves to what they were like before their illness began. This is hopeless. It
is vital to work out exactly how much you can or can't do in a day - and then do less.

Imagine that a normal healthy person has £1,000 worth of energy to spend in a day. The CFSs only
have £100. What is more, this has to be spread out throughout the day in such a way that they have
£20 "change" at the end. This will then allow recovery to occur. Furthermore you are only allowed to
spend £3 in one session – then rest. If you start to get symptoms then you are over-doing things.
Often this means you have initially to do LESS – but with careful pacing you will end up doing
MORE!

I also like all my CFSs to have a sleep in the day, even on a good day. Homo sapiens evolved in hot
climates where it is normal to have a siesta in the afternoon. Most people experience an energy dip
after lunch. Young babies and older people return to this more normal sleep pattern and ill people
should do the same. An afternoon sleep is normal! I do!
Resting In The Day
By resting, I mean complete rest from exercise, visitors, telephone calls, reading, computers, talking,

29
child minding, noise and TV. All the above count as activities which have to be carefully rationed
through the day. When you rest, lie horizontal because this reduces the work of the heart (it is much
harder work pushing blood round a vertical body, up hill and down dale, than when horizontal and
everything is on the flat). Interestingly caffeine helps the body scavenge AMP, so small amounts in
green tea, coffee or dark chocolate can be very helpful.

The second point is to have a proper rest, when you actually go to bed, regularly in the day, EVEN
ON A DAY WHEN YOU FEEL WELL. The fatigue in CFS is delayed. If you push yourself one day,
expect to "pay" for it 12-36 hours later. So just because you feel well one day, don't overdo things or
you will be worse off the next.

Thirdly, do things in short bursts. You will be more efficient if you do things for 10-40 mins
(whatever your window of time is) then rest for the same length of time. I had one patient who could
only walk 30 metres, but by walking 15 metres and resting, then going on again, she got up to
walking a mile a day!

Fourthly, vary your activity. This applies to the brain as well as the body – listening to the radio or
music uses a different part of the brain to watching TV. Washing up (sitting on a high stool please)
uses different muscles to walking.

The first step is to reduce the amount of physical and mental work each day until all days are about
the same. The level of activity is then very slowly increased each day. The key here is to vary activity.
Different parts of the brain and body have to be exercised. One of the most active areas of the cortex
is that which is concerned with vision. Processing information from a television for example requires
much more activity than listening to music. Television needs to be rationed. Similarly physical
exercise should be done using as many different muscle groups and initially should be limited to
simple stretching exercises without weights.

The level of physical and mental exercise is very gradually increased. It may well take several months
before significant changes are seen. To adjust the level of activity to what is appropriate you have to
judge things by the next day. If there is delayed fatigue then you have overdone it. There is a very
fine “window” between too much and too little. Straying either way makes CFS worse!

One of my patients, Lydia Noor, has developed a useful technique for rest. Every activity is scored as
to whether it is energy giving (e.g. sleep, lying in bed in a darkened room, meditation), energy taking
(e.g. dressing, walking, talking, cooking, cleaning etc) or energy neutral (easy reading, easy TV,
having a massage etc). Each day is scored in terms of time spent doing each activity and balanced out
so energy input equals energy output. Everybody has their own balance. But one can quickly see if
too much has been done on any one day, in which case a balancing is necessary. Doing it like this, on
a chart, takes the guilt out of resting. It simply becomes a necessity like eating or drinking.

I can recommend Calibre - The Cassette Library, a registered charity providing tapes of books to the
blind and print disabled (CFS patients qualify on many scores!). The service is free, the voice on the
end of the pnone extremely friendly. Contact Calibre Library on tel: 01296 432 339.
Work and Pacing
There is a whole spectrum of CFSs from those professional athletes who cannot do their marathons
in less than 2 hours 12 mins, to those who are bed-ridden. Some CFSs can manage full time work,
but very often are operating "on adrenaline" and crash when they give it up. This crash can last
several weeks or months. Many can do some part-time work - in which case late afternoon work is
the best. Don't try to change the job you are in - never resign or you will lose valuable rights. I am
happy to give sick notes, write to companies/bosses, do letters for early retirement and fill in

30
disability living allowance forms etc for my patients. I never used to charge for these letters, but
because there is so much paper work now, I make a charge reflecting admin/time costs.

If you work to your limit, then you should do very little outside work - spend the evenings and
weekends resting.

Get Organised
The people who get CFS are those who "burn the candle at both ends". They hold down a
demanding job, care for a family and are often active sportsmen/women. I see many top athletes with
CFS - professional footballers, England cyclists and swimmers, decathletes, many county badminton,
hockey, cricket and squash players and several quality marathon runners. These people are the very
ones who find it difficult to ask favours of others.

Ask other people to do things. Stop being house-proud. Get a cleaner and dish washer. Simplify your
life. Accept offers of "meals on wheels" from others. Standardise shopping lists so you don't need to
think each time. Arrange for as much food to be delivered as possible - e.g. have a standing order at
the green grocer for fruit and vegetables a week, with the fishman, with the butcher, milkman etc.
Many city areas have organic food delivery. Have standard menus every week so you don't need to
think about what to eat. Choose foods requiring minimal preparation. Use the internet to order from
supermarkets so that foods are delivered to the house directly – a weekly standard “shopping basket”
takes energy to set up but takes the mental and physical effort out of shopping thereafter. . Take
advantage of a washing machine and drier. Give up ironing - a nonsensical, energy sapping waste of
time and energy. Ironing came into fashion to kills nits and fleas in the seams of clothes and had a
purpose once! I don't iron, but then I always was a scruff!

Do things by the clock. We are creatures of habit and the physical body likes things to happen on a
regular basis – you ask any farmer who keeps animals – they thrive on routine. Sleep and eat at
regular times and pace activities so you do about the same every day and during the same time slots.
I know that life has a habit of getting in the way of this ideal, but as a general principle, stick to it.

I always think life is all about going from one crisis to the next. If every bit of your energy is taken
up every day, then you don’t have any left in reserve for the crises. This is another good reason not
to constantly push yourself to you limit.

Other Ideas about Managing Energy Levels In CFS June 2nd 1999
I am very aware that one of the hardest aspects of having CFS is knowing how to manage your time
so that in each day you have enough complete rest. Without this the healing process does not have
the chance to begin its work and the illness goes from bad to worse.

I am grateful to one of my patients, Andy Stephens, for the theory behind this handout. He has a
background in systems analysis which is a tool used to ensure a consistent output from a system.
Lost already? Don’t panic. Andy tells me this can be applied to any system, including the body. He
has used his experience to devise a system to help him pace his activities and predict the level of
activity at which he is going to be well. This is very helpful for CFS patients. It is vital that they pace
all their activities, but most sufferers are driven by guilt because they feel they are not doing enough.
Working out this system for each sufferer means that how much they are or are not allowed to do in
a day is dictated by a few simple guidelines.

Many thanks also to Lindsey Adams, who supplied the figures for our example and made this
handout CFS patient friendly.

31
EXAMPLE (the figures we are going to use to work out the guidelines)

Day 1 2 3 4 5 6 7 8 9 10 11 12
____________________________________________________________________________
Hours 8½ 8¼ 10½ 9½ 8 8¾ 10½ 9½ 11½ 8¾ 9½ 12½
Of Activity
_____________________________________________________________________________
Differences ¼ 2¼ 1 1½ ¾ 1¾ 1 2 2¾ ¾ 3
_____________________________________________________________________________

This is how you do it for yourself:


1/ You keep a daily record of all your activities, which you log on an hourly chart (not shown here).
You do it for a month paying careful attention to record the periods of rest when you are either
sleeping, lying down without the TV or radio on, or are in the bath. Gentle yoga, relaxation or
meditation can also be logged into this category.
2/ You add up the hours of activity for each day, i.e. day 1 - 8 ½ hours, day 2 – 8 ¼ hours etc.
3/ Now you work out the difference between each day’s hours of activity and the next. In our
example the difference between day 1 and day 2 is ¼ hours, between day 2 and day 3 is 2 ¼ hours
and so on.
4/ Add up all the differences: ¼ + 2 ¼ +1+1 ½+3/4 +1 ¾ +1+2+2 ¾ +3/4 +3 = 17.
5/. To find the average of this sum you divide 17 by the number of differences (the number of
differences in our example is 11) : 17÷11=1.54

6/ Use this average and multiply it by 1.128 = 1.73 (Don’t ask where 1.128 comes from – it
is just a number that works for this system!)
This figure 1.73 (rounded up to 1¾ hours) is called a standard deviation from the average.
7/ Total up the daily hours of activity - in our example the sum is 115.75 hours. When divided by the
number of days it gives you your average hours of activity per day.
115.75 ÷12=9.64 (rounded up to 9¾ hours)

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All this can be shown in the form of a table:

DAY HOURS OF DIFFERENCE


DAILY
ACTIVITY
1 8.50
2 8.25 0.25
3 10.50 2.25
4 9.50 1.00
5 8.00 1.50
6 8.75 0.75
7 10.50 1.75
8 9.50 1.00
9 11.50 2.00
10 8.75 2.75
11 9.50 0.75
12 12.50 3.00
TOTAL 115.75 17.00

AVERAGE HOURS: 115.75 : 12 days = 9.64; rounded up to nearest ¼ hour = 9¾ hours

STANDARD DEVIATION: 17 : 11 = 1.54; 1.54 X 1.128 = 1.73; rounded up to nearest ¼ hour =


1¾ hours

Using these figures we can draw a graph


Number of
NUMBER OF
HOURS Hours of activity
16 (patient’s actual
record)
14
12 8 DAY LIMIT
10
3 DAY LIMIT
8

6 1 DAY LIMIT
4
0 DAY LIMIT
2
0
1 2 3 4 5 6 7 8 9 10 11 12 DAY
S

33
RULES
8 Day limit: Keeping your daily amount of activity at or below 9 ¾ hours results in wellness (unless
something unexpected happens, i.e. extra stress you did not budget for);
exceeding the average (9¾ hours a day) for more than 8 days in a row results in relapse.

3 Day limit (Average hours + 1 standard deviation = 11 ½ hours):


Exceeding 11½ hours of activity a day on more than 3 out of 4 days results in relapse.

1 Day limit (Average hours + 2 standard deviations = 13 ¾ hours):


Exceeding 13 ¾ hours of activity a day on more than 1 in 4 days results in relapse.

0 Day limit (Average hours + 3 standard deviations = 15 hours):


Exceeding 15 hours of activity ALWAYS results in relapse.

This does make sense. What it means in this case is that to work most efficiently you should never do
more than 11 ¼ hours activity and never less than 7 ¾ hours. Working outside these limits mean
you become inefficient and waste energy needlessly.

This is comparable to a marathon runner. If he is to succeed he must pace himself carefully and
always run within certain limits – not too fast, not too slow. The runner who sprints 100 metres, then
walks 100 metres is not going to manage a marathon. The runner who jogs along at comfortable
running speed will make it!

This technique can be applied to any activity. Andy tells me he does similar graphs for changes of
activity. Again this makes sense as each change takes up mental energy reserves and shows that there
is a limit to chopping up major tasks into smaller ones.

This seems like a perfect opportunity to include some more wisdom on the subject of pacing
yourself. I am grateful to yet another CFS patient of mine, Sylvia Waites, for sharing these
guidelines with me - and you!

THE TEN COMMANDMENTS FOR REDUCING STRESS


1. Thou shalt not be perfect or try to be.
2. Thou shalt not try to be all things to all people.
3. Thou shalt leave things undone that ought to be done.
4. Thou shalt not spread thyself too thin.
5. Thou shalt learn to say “NO”.
6. Thou shalt schedule time for thyself, and for thy supporting network.
7. Thou shalt switch off and do nothing regularly.
8. Thou shalt be boring, untidy, inelegant and unattractive at times.
9. Thou shalt not even feel guilty.
10. Thou shalt not be thine own worst enemy, but thine own best friend.

34
VITAMINS AND MINERALS – what to take and when
Nutritional Supplements Updated May 2006
I believe that if you wish to stay healthy, or recover from almost any illness, then taking nutritional
supplements is essential. My reasons are given below. What you should take daily for optimum health are as
follows:
Morning
• BioCare multivitamin/mineral one daily (this contains B vitamins which can cause insomnia, so
don't take in the evening). Contains vit A 2,000 i.u, B1 25mg, B2 25mgs, B3 50mgs, B5 100mg, B6 as its
active form pyridoxal-5-phosphate 25mg, B12 30mcg, inositol 12mg, PABA 10mg, biotin 35 mcg, folic acid
400mcg, magnesium ascorbate 243mg (vit C), Vit D 250i.u, Vit E 75i.u. (50mg). Also magnesium 22mg, calcium
6mg, potassium 8.9mg, zinc 8.5mgs, molybdenum 98.7mcg, manganese 300mcg, chromium 50mcg, iodine
37.8mcg, selenium 50mcg
• Vitamin C 500mgs (as magnesium ascorbate) Or ascorbic acid (if tolerated) which can be mixed
with MMM and improves its absorption.
• MicroCell Essential Fatty Acids one capsule – contains oligosaccharides 500mg, linseed oil 173mgs and
GLA 108mgs (equivalent to 1,000mgs of evening primrose oil).
Evening
• Vitamin C 500mgs, magnesium ascorbate. Or ascorbic acid
• Microcell Essential fatty acids one capsule

Throughout the day drink Myhill’s Magic Minerals


This is a mix of minerals which you make up in water or fruit juice, all essential for human metabolism which
increasingly are lacking in modern food supplies. It contains minerals in the correct proportion for human
requirements. – the amounts given below are elemental weights of the pure mineral. These amounts are those
considered desirable from modern nutrition research and are mostly above the “Recommended Daily Amount”.
If better preparations come available or I learn more about essential minerals then the composition of MMM
may change.
Per one gram of MMM
Calcium (as calcium chloride) 60 mgs
Magnesium (as magnesium chloride) 70 mgs
Potassium (as potassium chloride) 40 mgs
Strontium (as strontium chloride) 20mgs
Zinc (as zinc chloride) 6mgs
Iron (as ferric ammonium chloride) 3mgs
Iodine (as potassium iodate) 3mgs
Manganese (as manganese chloride) 2 mgs
Boron (as sodium borate) 2 mgs
Cobalt (as cobalt sulphate) 1mgs
Copper (as copper sulphate) 200mcgs
Molybdenum (as sodium molybdate) 40 mcg
Selenium (as sodium selenate) 40 mcg
Chromium (as chromium chloride) 40 mcg
Vanadium (as vanadium oxide) 10 mcg
I have omitted some 3 elements for the following reasons: sulphur is not biologically available as the mineral – it is
available in sulphur-containing amino acids (eat protein) and in glucosamine sulphate or MSM or N acetyl
glucosamine or from boiling bones and using the stock in soups and stews; phosphorus is plentiful in meat, is often
used as a food additive and is not in the MMM; and silicon - cannot be used by the body as an inorganic mineral.
Dosage
The daily dose of MMM is one gram (one small scoop in ½ pint water) per two stone of body weight (sorry –
don’t do metric!) to a maximum of 6 grams (six small scoops made up in 3 pints of water and taken
throughout the day) for a 12 stone person. Start off with just a half a pint of mix daily and build up slowly
to allow your stomach to adjust to the changes, otherwise it may cause nausea and loose bowel
movements. With 10% fruit juice this is palatable. It also makes one drink water, something many people
forget to do! MMM is suitable for all age groups including babies and pregnant women. The dose is not

35
critical as there is a very wide margin of safety for all essential minerals! The mix is 100% minerals with no
additives, colourings, flavourings or any excipients. The formula is completely stable and will last for many
years. However, it is vital that the lid is tightly screwed on to the jar to prevent absorption of moisture
from the air. The mixture may change as I learn new things about nutritional science.

MMM is supplied in 405gm containers sufficient for 3 months supply of all minerals for someone weighing 9
stone, cost £16 plus P and P £4.00. Please order MMM from Upper Weston, Llangunllo, Knighton, Powys
LD7 1SL, or internet (e-mail: smyhill@globalnet.co.uk ). Cheques payable to Sarah Myhill Limited.

Please, note that I normally supply the MMM mix to my own patients only (this includes people who
have ordered tests through the website and I have written to their GP). However, I am able to supply a
non-patient on a “named patient basis”, which means that I need a letter from a doctor confirming that
she/he has recommended that preparation for that particular person.

Alternatively, you should take a good multimineral preparation with comparable amounts of these
minerals.

Some people do not tolerate the MMM because it is so rich in magnesium, calcium, potassium and iron. For these,
change to SSSS (Sarah’s Solution for Sensitive Stomachs) which provides 60mgs calcium, 60mgs magnesium, 40mgs
potassium per daily dose and contains no iron. 100 g (sufficient for 100 days adult dose) cost £12 + £4 p&p

Sunshine – necessary to make vitamin D. The daily requirement is one quarter of that time necessary to tan or
turn pink on arms and face. This is achievable in summer but not winter. Either use a sun lamp, or a winter
holiday, or from January to April inclusive take vitamin D as cholecalciferol 2,000i.u. daily – this costs £18.50
for 4 months supply plus £1 p and p from me. Vitamin D deficiency is extremely common and partly
responsible for our epidemics of immune disorders, osteoporosis, cancer and heart disease!
Salt - if you are not eating processed foods, then you will need some salt. Use sea salt which also contains
very rare trace elements which are also likely to be essential for normal metabolism. I suggest ¼ tsp. daily on
food.

Costs ( BioCare Trade prices Feb 2003)


14590 - Multivitamin/mineral 90 @ £13.94. (Three months supply)
144120 – Essential fatty acids 120 @ £10.76
172180 - Magnesium ascorbate 500mgs 180 @ £15.70
Cholecalciferol 2,000 daily - 4 months’ supply (250 capsules of 1,000i.u.) costs £18.50 available from me.
Please, add £4.00 for postage and packing when ordering the MMMs and £1 for the vitamin D
(cholecalciferol).
I have an agreement with BioCare, a mail order company (tel 0121 433 3727) whereby ALL MY PATIENTS
QUALIFY FOR TRADE PRICES. I do not have any financial arrangements with these BioCare and do not
profit from their sales. You need a code to order which is the first four letters of your surname and the first
four letters of your first name. Please, note that I cannot guarantee that these prices are the most current
prices – please, make sure you get this information when placing your order.

If you think of the human body as a language, then vitamins and minerals are the alphabet. With the letters of
the alphabet one can make words, sentences, paragraphs, chapters, books, libraries and a whole culture. All
the letters are necessary for complete health. Actually you could go a long way with a language without the
letter X. But without X there’s no sex and the human race would rapidly become extinct! All micronutrients
are essential and we all need to be taking a bit of everything.

Everybody can benefit from taking nutritional supplements regularly. I do. My reasons are as follows:

1. We evolved over millions of years requiring a high calorie diet. Man was physically active requiring energy
to keep warm, hunt, gather, fish and fight. Modern man is a lounge lizard by comparison. We simply do not
need to eat as much. Because we eat less calories, we eat fewer vitamins, mineral s and essential fatty acids
which would accompany those calories.

36
2. There is a one way cycle of trace elements from the soil, into plants and animals, into us, then out into the
sea. We are not recycling composted human sewage onto the land and so we are out of balance. Trace elements
in the soil are being depleted and not replaced, so we too are becoming deficient.

3. Plants cannot absorb trace elements directly from the soil. They rely on fungi called mycorrhiza which cover
the root hairs, absorb soil water and trace elements and put them into a bioavailable form for the plants to
absorb. Artificial nitrogen and pesticides kill mycorrhiza and so chemical farming gives us malabsorbing
plants.

4. Plants grown on chemical fertilisers grow rapidly and outstrip their trace element supplies. For example
cows put on such 'flushed' grass may develop grass staggers - acute magnesium deficiency.

5. We tend to eat foods which have been processed, so many nutrients are lost, and these losses are accelerated
by sugars, caffeine, alcohol and other such social poisons (delightful though they may be!).

6. We are increasingly exposed to toxins which require vitamins and minerals for their excretion. These toxins
effectively increase our needs for all nutrients. The commonest cause for iron deficiency anaemia in this
country is tea drinking. Tea contains tannin which binds (chelates) trace elements including iron and so blocks
their absorption. More obvious toxins include pesticide residues, lead, mercury (in fillings), cadmium
(smoking), aluminium (water), volatile organic compounds (perfumes, solvents, exhaust fumes) and so on - a
seemingly endless list.

7. The rate of human evolution is accelerating all the time. We are all called upon to make changes to our lives
all the time. This is very stressful. Western man has probably never been so stressed on an everyday basis than
before and this increases nutritional demands.

98% of all body tissues are replaced every six months. It may take this time to get the full benefit from
supplements. My family are hopeless at taking supplements so I put them into the cooking. Fruit salad gets a
sprinkling of vitamin C, oils and minerals get squirted into stews, mashed potato and soups. It is impossible to
disguise the B vitamins, so they go on the table with breakfast and I bully my girls until they get swallowed.
Actually now they are at University they have found they do not feel well unless they take supplements – they
even telephone me for orders!

37
YOU MUST SLEEP
Sleep and sleeping drugs
September 2004
Humans evolved to sleep when it is dark and wake when it is light. Sleep is a form of hibernation
when the body shuts down in order to repair damage done through use, to conserve energy and hide
from predators. The normal sleep pattern that evolved in hot climates is to sleep, keep warm and
conserve energy during the cold nights and then sleep again in the afternoons when it is too hot to
work and hide away from the midday sun. As humans migrated away from the Equator, the sleep
pattern had to change with the seasons and as the lengths of the days changed. People needed more
sleep during the winter than in the summer in order to conserve energy and fat resources.
Furthermore during the summer humans had to work long hours to store food for the winter and so
dropped the afternoon siesta. But the need for a rest (if not a sleep) in the middle of the day is still
there. Therefore it is no surprise that young children, elderly and people who become ill often have
an extra sleep in the afternoon and for these people that is totally desirable. Others have learned to
power nap, as it is called, during the day and this allows them to feel more energetic later. If you can
do it then this is an excellent habit to get into – it can be learned! The average daily sleep
requirement is nine hours, ideally taken between 9.30pm and 6.30am, i.e. during hours of darkness,
but allow for more in the winter and less in the summer. Light on the skin prevents the production of
melatonin, which is the sleep hormone essential for a good night’s sleep. Therefore, the bedroom
should be completely blacked out and quiet in order to give the best chance of quality sleep. Even
people who are born blind still have a day/night rhythm. It is light landing on the skin which has the
effect – just closing your eyes will not do it!

After the First World War a strain of Spanish ‘flu swept through Europe killing 50 million people
worldwide. Some people sustained neurological damage and for some this virus wiped out their sleep
centre in the brain. This meant they were unable to sleep at all. All these poor people were dead
within 2 weeks and this was the first solid scientific evidence that sleep is more essential for life as
food and water. You must put as much work into your sleep as your diet.
Everybody is different but there are some things which improve sleep for most people such as:

• A regular pre-bedtime routine – your “alarm” should go off at 9pm at which point you drop all
activity and move into your bedtime routine.
• A regular bed time – 9.30pm
• A busy day with the right balance of mental and physical activity
• Not having a bed fellow who snores
• Small carbohydrate snack just before bedtime (eg nuts, seeds) helps prevent nocturnal hypoglycaemia
– often manifests with vivid dreams or sweating.
• Perhaps restrict fluids in the evening if your night is disturbed by the need to pee.
• No stimulants such as caffeine or adrenaline inducing TV, arguments, phone calls, family matters or
whatever before bed time! Caffeine has a long half life – none after 4pm
• Dark room – the slightest chink of light landing on your skin will disturb your own production of
melatonin (the body’s natural sleep hormone) – have thick curtains or blackouts to keep the bedroom
dark – this is particularly important for children! Do not switch the light on or clock watch should you
wake.
• A source of fresh, preferably cold, air.
• A warm comfortable bed – we have been brainwashed into believing a hard bed is good for you and so
many people end up with sleepless nights on an uncomfortable bed. It is the shape of the bed that is
important (see section on posture). It should be shaped to fit you approximately and then very soft to
distribute your weight evenly and avoid pressure points. Tempur mattresses are excellent (if
expensive) as are water beds.

38
• Once trying to drop off to sleep, not allowing oneself to think about the past or future. Use
psychological games to keep the brain in the present. I have a horse ride I go on and imagine my way
round my ride and what I see on the way in as much detail as I can. By the time I get to Tyn y Ryn
gate I’m usually gone!
• If you wake in the night try to remember your last dream before you wake up fully. The difficulty is
remembering to remember – but if you can hang on to your past dream you will drop back to sleep
very quickly. If you have to get up in the night to have something to eat or drink before going back to
sleep then you are probably an addict and/or hypoglycaemic and getting withdrawal symptoms!
• If your sleep is disturbed by sweating then this is likely to be a symptom of low blood sugar.
• Another common cause of disturbed sleep is hyperventilation which often causes vivid dreams or
nightmares. See my section on Hyperventilation. However I often use a benzodiazepine such as
diazepam 2-5mgs at night which reduces the sensitivity of the respiratory centre.
• If sleep is disturbed by pain then one must just take whatever pains killers are necessary to control
this. Lack of sleep simply worsens pain.
• If one wakes in the nights with symptoms such as asthma, chest pain, shortness of breath, indigestion
etc then this may point to food allergy being the problem with these withdrawal symptoms occurring
during the small hours.
• Some people find any food disturbs sleep and they sleep best if they do not eat after 6pm.
• If you do wake in the night do not switch the light on, do not get up and potter round the house or you
will have no chance of dropping off to sleep.

Getting the physical things in place is the easy bit. The hard bit is getting your brain off to sleep. I
learned an astonishing statistic recently which is that throughout life, the brain makes a million new
connections every second!! This means it has a fantastic ability to learn new things. This means it is
perfectly possibly to teach your brain to go off to sleep, it is simply a case of pressing the right
buttons. Getting off to sleep is all about developing a conditioned reflex. The first historical example
of this is Pavlov’s dogs. Pavlov was a Russian physiologist who showed that when dogs eat food,
they produce stomach acid. He then “conditioned” them by ringing a bell whilst they ate food. After
two weeks of conditioning, he could make them produce stomach acid simply by ringing a bell. This
of course is a completely useless conditioned response, but it shows us the brain can be trained to do
anything.

Applying this to the insomniac, firstly, he has to get into a mind-set which does not involve the
immediate past or immediate future. That is to say if he is thinking about reality then there is no
chance of getting off to sleep – more of this in a moment. Then he uses a hypnotic (see below) which
will get him off to sleep. He applies the two together for a period of “conditioning”. This may be a
few days or a few weeks. The brain then learns that when it gets into that particular mindset, it will
go off to sleep. Then the drug is irrelevant. However, things can break down during times of stress
and a few days of drug may be required to reinforce the conditioned response. But it is vital to use
the correct “mind-set” every time the drug is used, or the conditioning will weaken.

I do not pretend this is easy, but to allow one’s mind to wander into reality when one is trying to
sleep must be considered a complete self-indulgence. It is simply not allowed to free-wheel.

Everyone has to work out their best mind-set. It could be a childhood dream, or recalling details of a
journey or walk, or whatever. It is actually a sort of self hypnosis. What you are trying to do is to
“talk” to your subconscious. This can only be done with the imagination, not with the spoken
language. The following is lifted from a book on self hypnosis which works for some:

“We know that the hypnotic state is characterized by extreme responsiveness to suggestion. You can
use this information for conditioning yourself in self hypnosis. Here is a standard procedure to

39
follow. Lie down in bed, ready for sleep initially with your eyes open (the room needs to be dark).
Mentally give yourself the suggestion that your eyes are becoming heavy and tired. Give yourself the
suggestion that as you count to ten your eyes will become very heavy and watery and that you will
find it impossible to keep your eyelids open by the time you reach ten. If you find that you cannot
keep them open and have to close them, then you are probably under self- hypnosis. At this point
deepen the state by again slowly counting to ten. Between each count mentally give yourself
suggestions that you are falling into a deep hypnotic state. Give yourself suggestions of relaxation.
Try to reach a state where you feel you are about to fall asleep. Give yourself the suggestion that you
are falling more deeply down into sleep. Some may get a very light feeling throughout the body;
others may get a heavy feeling.

Let us assume that your eyes did not become heavy. Then repeat the procedure. You can count to
one hundred if you need this period of time to assure an eye closure. The closing of the eyes is the
first sign you are in a receptive frame of mind. Let us assume that you get the eye closure. Take a
longer count to get yourself in the very relaxed state. Once you achieve this you should be able to
respond properly. The difficult bit is not allowing your brain to wander off into other areas. You
must work hard at concentrating on the counting and the responses that achieves.

If you respond properly, give yourself the “post-hypnotic suggestion” that you will be able to put
yourself under later by counting to three, or using any specific phrase you desire. Continue using it
every day and give yourself the post hypnotic suggestion every time you work with it, that at each
succeeding session you will fall into a deeper state and that the suggestions will work more
forcefully with each repetition.

Each time that you work towards acquiring the self-hypnotic state, regardless of the depth that you
have achieved and whether or not you have responded to any of the tests, give yourself the
following suggestions: “The next time I hypnotise myself, I shall fall into a deeper and sounder
state” You should also give yourself whatever suggestions you desire as though you were in a very
deep state of hypnosis. You may ask “If I’m not under hypnosis, why give myself the suggestions?”
You do this so that you will begin to form the conditioned reflex pattern. Keep at it. One of the times
that you work at achieving self-hypnosis the conditioned response will take hold……..…you will
have self hypnosis from that time on. It is like learning to drive a car with a clutch. At first you must
consciously go through the process of putting your foot on the clutch and shifting gears. Usually
there is a grinding of the gears and you feel quite conspicuous about this, but gradually you learn
to do this almost automatically and you gain confidence in you driving ability. The same is true of
hypnosis. As you work at you task, you gradually get the feel of it and you achieve proficiency in it.

I instinctively do not like prescribing drugs. However, I do use them for sleep, in order to establish
the above conditioning and to restore a normal pattern of sleep, after which they can be tailed off or
kept for occasional use. Indeed, viruses can cause neurological damage (for example polio) and this
could involve damage to the sleep center. So often CFS patients get into a bad rhythm of poor sleep
at night, which means they feel ill for the day, which means they get another bad night. They are half
asleep by night and half awake by day. Furthermore, their natural time for sleep gets later and later.
They go to bed late and if they have to get up at the usual time, chronic lack of sleep ensues. Indeed
there is now evidence that the biological clock is dependent on normal adrenal function – and we
know this is suppressed in CFS.

So often some medication is needed to facilitate sleep. Most CFS patients react badly to drugs in
normal doses. I like to use combinations of low dose herbals, natural remedies and prescribed drugs
to get the desired effect. Everybody works out his or her own cocktail which suits. This may have to
be changed from time to time. I like to supply a “starter pack” which has a selection of hypnotics to

40
try. Once you have worked out your best combination you can either order it from me, or your GP or
whatever is easiest. Please note that I am only able to prescribe the sleeping drugs, and any
other medication listed in this booklet to my patients and not members of the public. But
anybody can purchase and use melatonin (from www.pharmwest.com), valerian and Nytol.

I am always asked about addiction. My experience is that this is rare, especially if drugs are used as
above to develop a conditioned reflex. One has to distinguish between addiction and dependence. We
are all dependent on food, but that does not mean we are addicted to it. We are all dependent on a
good night’s sleep for good health and may therefore become dependent on something to achieve
that. This does not inevitably lead to addiction. Addiction is a condition of taking a drug excessively
and being unable to cease doing so without other adverse effects. Stopping your hypnotic may result
in a poor night’s sleep but no more than that. This is not addiction but dependence.

Natural preparations and prescription drugs to help sleep


These all work differently and so I like to use low dose combinations until you find something that
suits. Choose from the following, and start with:

Melatonin 3mgs (one tablet) 1-3 tablets at night. Some people just need 1mg. CFS patients have a
poor output of hormones from all their glands namely the hypothalamus, pituitary, adrenals, thyroid
and also the pineal gland. The latter is responsible for producing melatonin, the natural sleep
hormone. It seems logical to me therefore to try this first. I can supply some in the initial sleep
“starter pack” to my patients only. An American supplier, PharmWest, supply melatonin directly to
the patient - they do not require a prescription. Their website address is www.pharmwest.com., to
order by phone: 00800 8923 8923.

One or two of my patients have become depressed with melatonin, so be aware of this. On the
container it also states melatonin should be avoided in autoimmune disorders, but I can find no
reason why this should be so.
• Valerian complex tablets 1-4 at night. This is a herbal preparation containing valerian, hops,
passiflora, scullcap, wild lettuce and Jamaican dogwood. If you need to avoid sugar, then the
sugar coating (if present) should be washed off the tablets in some water. I can supply this – 100
tabs cost £3.60. This is shorter acting and can be taken in the middle of the night.
• Nytol (diphenhydramine 50mg). This is a sedating antihistamine available over the counter. The
dose is 1-2 at night. 16 @ £3.50. This is longer acting – don’t take in the middle of the night or
you will wake feeling hungover.

If there is no improvement with a combination of the above, or if there are intolerable side effects,
then I would go on to a prescribed drug. I usually start with one of the sedating antidepressants such
as :

• Amitriptyline 10mgs - 25mgs. I would start with 5mg initially. Most CFS patients are made
worse and feel hungover with “normal doses”. (Amitriptyline 10mgs 28 @ £0.75 ; Amitriptyline
25mgs 100 @ £0.75). OR
• Dothiepin - I do not prescribe dothiepin now because a study suggested that this had an
increased risk of cardiac dysrhythmias compared to other tricyclic antidepressants.
• Surmontil 10-30mgs at night. Surmontil 10mgs 84 @ £15, Surmontil 25mgs 84 @£22
• Short acting temazepam 10mgs. This is useful but recently has been made a controlled drug so
doctors are understandably twitchy about prescribing it. It is controlled because some drug
addicts were taking the gel and injecting it into themselves. Nowadays I tend to use instead
zaleplon (Sonata) or medium acting zopiclone (Zimovane)7.5mg.

41
• Diazepam is helpful if sleep is disturbed either because of hyperventilation (it reduces the
respiratory drive) or for muscle spasms (it is a good muscle relaxant).

Different people will respond to different combinations of hypnotics. For example, one person may
take a melatonin and two valerian at night, plus a zaleplon when they wake at 3.00am. Somebody
else may be best suited by 10 mg amitriptyline at night with a Nytol. Don’t be afraid to try
combinations - there are no serious side effects that I am aware of with any of these used in
combination. However, don’t change more than one thing at any time otherwise you (and I) will get
confused!

I like to supply a “starter pack” to my patients – this contains melatonin, valerian and Nytol. . Once
you have worked out your best combination, you can either order it from me or ask your GP to
prescribe.

One of my patients has found Sea Band (Isocones) very helpful – this uses an acupuncture technique
by applying a wrist band – this is available from Boots. See www.sea-band.com

The prices quoted above are what I can supply at TO MY PATIENTS. To these prices I add on £5
per order to cover postage and packing and administration. Every prescription issued has to be
checked by me and recorded in the clinical notes. Please, allow a week to receive your order.

The “starter pack” consists of :

- Nytol one a night 8 tablets


- melatonin 3 mgs 20 tablets
- Valerian complex 30 tablets. The cost is £10.00.

If you find your dose of hypnotic is gradually creeping up, then this may be because you have
become less disciplined about establishing the conditioned reflex. Go back to the basics as above.

When your normal sleep pattern has been restored you can begin to reduce or tail off completely
your hypnotic medication but only if good quality sleep can be maintained. If your sleep begins to
suffer, you must go back on the medication that worked before because the need to sleep is of
paramount importance in CFS patients.

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DIETS
DIET FOR CFS – A DIET WHICH ALL CFS SUFFERERS SHOULD TRY AT SOME STAGE.
There are four aspects of what we eat which commonly cause fatigue namely high carbohydrate,
food allergy, gut dysbiosis (wrong bugs in the gut) and chemical overload. This diet tries to address
all four of these problems at the same time, since they often co-exist in the same patient. It is quite a
useful diet to go back to if things go wrong and you start to relapse!

Firstly, as a general principle, carbohydrates tend to cause fatigue, even in “normal” people. We
should be eating protein and fat in the day and saving carbohydrate (CHO) until the evening when it
helps sleep. At present the British diet is completely upside down because we eat cereals and toast at
breakfast, sandwiches at lunch and meat in the evening – it makes you feel tired in the day and wakes
you up at night! Secondly food allergy is a common cause of fatigue (often also irritable bowel,
mood swings and headaches) and the commonest offenders are wheat, rye, corn, dairy products, tea,
coffee, sugar, yeast etc. Thirdly, gut dysbiosis whereby foods are fermented instead of digested can
also present with fatigue. Fourthly, chemicals in the diet inhibit enzyme systems and slow up
metabolism – this applies to drugs as well as food additives and pesticide residues. Avoid additives,
colourings, flavourings etc, avoid plastic wrappings (especially if heated!) on food and try to switch
to organic foods wherever possible.

These days I find myself talking more about addiction than allergy and there is no doubt
carbohydrate addiction is a major cause of tiredness. It results in hypoglycaemia and maybe you can
identify with the following:

The Problem of Addiction


I estimate that over 90% of people who consult me are addicts. Addiction usually starts off in life with sugar,
but then moves onto carbohydrates generally, chocolate, caffeine, nicotine, alcohol and maybe onto other hard
drugs. There is a carbohydrate addiction gene which switches on when the carbohydrate content of the diet
exceeds 4%. This makes one endlessly crave carbohydrates when carbohydrates are available. Again this
does not make sense until you think from an evolutionary point of view. Protein foods such as meat, fish and
shellfish, were available throughout the year, but every so often there would be a bonanza when, for example,
the banana tree would ripen. The only way man could store this food source was to eat it and store it as body
fat. So once carbohydrate appeared in abundance and he started to eat it the carbohydrate gene was switched
on to create a craving Homo Sapiens who ate to excess, put on weight and was thereby able to store it in his
body for leaner times ahead. The problem in modern times is that carbohydrates are now freely available and
we continue to crave them and continue to put on weight. Furthermore, once you put on weight, the
imperative to use your brain and your body to seek new food declines and so one becomes sluggish and
lethargic. The converse of this is true. If you wish to lose weight then eat a very low carbohydrate diet such
as the Atkin’s diet and often you will see an immediate improvement in your mental and physical energy levels.

The reason we become addicted is because consuming the addictive foods has a direct effect on brain
neurotransmitters causing the release of happy hormones such as serotonin, adrenaline, noradrenaline,
endogenous opiates and possibly others. These have the combined effect of giving energy (both physical and
mental) as well as a calming effect (everybody recognizes comfort foods – or reward foods). These are highly
desirable in the short term, but you can’t have an upper without a downer, and soon, levels of happy hormone
start to decline. We recognize the symptoms, start to crave again and go for another shot of addiction.
Sometimes we vary the addiction and switch from one addiction to another.

In the long term chronic addictions lead to chronic fatigue!

Hypoglycaemia (updated 17 July 2006)


It is critically important for the body to maintain blood sugar levels within a narrow range. If the

43
blood sugar level falls too low, energy supply to all tissues, particularly the brain, is impaired.
However if blood sugar levels rise too high this is very damaging to arteries and the long term effect
of arterial disease is heart disease and strokes – this is probably caused by a local reaction in
periarteriolar fat resulting in release of proinflammatory cytokines causing damage to arteries.
Normally the liver controls blood sugar levels. It makes the sugar from energy stores inside the liver
and releases sugar into the blood stream minute by minute in a carefully regulated way to cope with
body demands, which may fluctuate from minute to minute. This system of control works perfectly
well until we upset it by eating the wrong thing. Eating excessive sugar at one meal, or excessive
refined carbohydrate, which is rapidly digested into sugar can suddenly overwhelm the liver’s normal
control of blood sugar levels.
We evolved over millions of years eating a diet that was very low in sugar and had no refined
carbohydrate. Control of blood sugar therefore largely occurred as a result of eating this Stone Age
diet and the fact that we were exercising vigorously, so any excessive sugar in the blood was quickly
burned off. Nowadays the situation is different - we eat large amounts of sugar and refined
carbohydrate and do not exercise enough in order to burn off this excessive sugar. The body
therefore has to cope with this excessive sugar load by other mechanisms.
When food is digested, the sugars and other digestive products go straight from the gut in the portal
veins to the liver, where they should all be mopped up by the liver and processed accordingly.
Excessive sugar or refined carbohydrate overwhelms the liver, which simply cannot mop up the
amount of sugar which is there and the sugar spills over into the systemic circulation. This results in
high blood sugar, which is extremely damaging to arteries. If one were exercising hard, this would be
quickly burned off. However, if one is not, then other mechanisms of control are brought into play.
The key player here is insulin, a hormone excreted by the pancreas. This is very good at bringing
blood sugar levels down and it does so by shunting the sugar into fat. There is then a rebound effect
and blood sugars may well go too low. Low blood sugar is also dangerous to the body because the
energy supplied to all tissues is impaired. It is when the blood sugar is low that this is called
hypoglycaemia. Subconsciously people quickly work out that eating more sugar alleviates these
symptoms, but of course they invariably overdo things, the blood sugar level then goes high and one
ends up on a rollercoaster ride of blood sugar going up and down throughout the day.
Symptoms of hypoglycaemia
The problem is that when the blood sugar is high people feel “normal”, indeed maybe slightly
boosted by this high level of blood sugar. This is because they have good energy supply to their
muscles and brain albeit short-term. The problem arises when blood sugar levels dive as a result of
insulin being released and energy supply to the brain and the body is suddenly impaired. This results
in a whole host of symptoms - the brain symptoms include difficulty thinking clearly, feeling spaced
out and dizzy, poor word finding ability, foggy brain and sometimes even blurred vision or tinnitus.
The body symptoms include suddenly feeling very weak and lethargic, feeling faint and slightly shaky,
rumbling tummy and a craving for sweet things. The sufferer may look as if they are about to faint
(and indeed often do) and have to sit down and rest. The symptoms can be quickly alleviated by
eating something sweet - if nothing is done then the sufferer gradually recovers. These symptoms of
hypoglycaemia can be brought upon by missing a meal (or one’s usual sweet snack top up such as a
sweet drink), by vigorous exercise or by alcohol. Diabetics may become hypoglycaemic if they use
too much medication.
When blood glucose levels fall for any reason, glycogen stores in the liver many be mobilised to prop
them up. The trouble is that these are probably already rather poor in people with increased
carbohydrate intake, where insulin is relied on heavily. Another rapid and very effective way in which

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the body repletes the low glucose is by hepatic conversion of short chain fatty acids to glucose. In a
healthy person on a good balanced diet the only time this is of importance is during the night because
of the long break between food intake. Short chain fatty acids are then used to prop up circulating
glucose and prevent a fall below whatever that person’s usual fasting glucose level is. Short chain
fatty acids are made in the gut by bacteria fermenting fibre (and such starch as escapes small
intestinal digestion). Production is maximised from about 3 hours after food intake. That is to say,
short chain fatty acids are highly protective against the dips we see in blood sugar.
Therefore, a key symptom of a hypoglycaemic tendency is disturbed sleep. This occurs typically at 2
– 3 am, when blood sugar levels fall and there are insufficient short chain fatty acids to maintain a
blood sugar. Low blood sugar is potentially serious to the brain, which can only survive on sugar
and, therefore, there is an adrenalin reaction to bring the blood sugar back, but this wakes the sleeper
up at the same time.
Test for hypoglycaemia
Measuring blood sugar levels is not a terribly useful test for hypoglycaemia, partly because they
fluctuate so much and partly because by the time one gets the symptoms of hypoglycaemia, the blood
sugar levels have started to correct. A much better test would be to measure short chain fatty acids in
blood collected in the morning before breakfast. The test should be done as follow:

• It is important to continue your usual diet – indeed, there are no special dietary instructions
for the test, but the blood sample must be taken between 9 –12 hours after a meal;

• 2 ml of blood taken into a fluoride oxalate tube and posted off in an envelope to Acumen.

There is a final twist to the hypoglycaemic tale which complicates the situation further. When one
becomes stressed for whatever reason, one releases stress hormones in order to allow one to cope
with that stress. Insulin is such a stress hormone and has the effect of shunting sugar in the blood
stream into cells. This produces a drop in blood sugar levels and also causes hypoglycaemia.
Therefore, hypoglycaemia can be both a cause of stress and the result of stress, indeed, another one
of those vicious cycles that are so often seen in disease states.
Treatment of Hypoglycaemia
Treatment is to avoid all foods containing sugar and refined carbohydrate. The problem for the
established hypoglycaemic is that it may take many weeks or indeed months for the liver to regain
full control of blood sugar and therefore the symptoms of hypoglycaemia may persist for some time
whilst the sufferer continues to avoid sugar and refined carbohydrate. This means that when you
change your diet you will get withdrawal symptoms and it may take many weeks of a correct diet
before these symptoms resolve. This type of addiction is very much like that which the smoker or the
heavy drinker suffers from.
One needs to switch to a diet which concentrates on eating proteins, fats and complex (and therefore
slowly digested) carbohydrates. Initially I suggest doing a high protein high fat diet, but include all
vegetables (care with potato), nuts, seeds, etc. Fruit is permitted but rationed, since excessive
amount of fruit juices or dried fruits contain too much fruit sugar for the liver to be able to deal with.
I suggest one piece of fruit at mealtimes.
I now consider taking high dose probiotics an essential part of controlling low blood sugar. This is
because probiotics ferment carbohydrates to short chain fatty acids – these have no effect on blood
sugar and are the preferred fuel of mitochondria. The best and cheapest way to do this is to brew
your own – see section on probiotics! Probiotics also displace yeast, which worsen the

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hypoglycaemia problem.
With time the regime can be relaxed, but a return to excessive sugar and refined carbohydrate means
the problem starts again.
Finally, many sufferers of hypoglycaemia may need something sweet to eat immediately before and
during vigorous exercise, until the body learns to fully adapt.
Hypoglycaemia is usually accompanied by micronutrient deficiencies. You should also take
nutritional supplements. My experience is that chronic hypoglycaemia is a very common cause of
fatigue in CFS sufferers.
To tackle hypoglycaemia one needs to do a diet based on foods of low glycaemic index. The GI is a
measure of the ability of foods to raise one’s blood sugar levels. Sugar (ie disaccharides) have
arbitrarily been given a GI of 100. High GI foods are the grains (wheat, rye, oats rice etc), root
vegetables (potato, sweet potato, yam, parsnip), alcohol, sugars, and fruits, dried fruits and fruit
juices. But expect to see withdrawal symptoms which can persist for weeks.
Why sugar and fast carbs are so bad for energy levels – a possible explanation
Yudkin et al explains all in the Lancet May 2005! Too much sugar in muscles is very damaging to
muscles. The arterial control of the blood supply to muscles is by tiny collar of fat which wraps itself
round tiny arteries (arterioles). If the blood sugar rises, this collar of fat releases a cytokine which
makes the arteriole contract. This has the metabolically desirable effect of preventing too much sugar
getting to muscle and damaging it. However the blood supply to the muscle will be impaired as well,
so the muscle cannot work properly. Also the cytokine released by the fat causes inflammation and
damages the arteriole wall. This is also probably the basis of high blood pressure and arterial disease.
And don’t forget in CFS we see high levels of cytokines. The general presumption is that these come
from immune activity as a result of viral or toxic stress. BUT they could be produced by fat cells as a
result of too much carbohydrate in the diet! (Reference: Lancet 2005: 365:1817-20 “Vasocrine” signalling from perivascular
fat: a mechanism linking insulin resistance to vascular disease.)

Allergy
Allergy is the great mimic and can produce almost any symptoms. However by the time allergy has
produced fatigue it has also cause other problems. Suspect an allergy problem if any, or a
combination of the following are present:

1. If the onset of fatigue is pre-dated by PIMS (Psychological, Irritable bowel syndrome,


Migraine and headaches). Allergies to foods which hitherto have produced either mood
swings, depression, PMT, wind, gas, bloating, abdominal pain, alternating constipation and
diarrhoea, migraines or headaches, if undiagnosed and not avoided often go on to produce
fatigue.
2. Other obvious allergic disorders (which often present in childhood) such as asthma, eczema,
urticaria, rhinitis and catarrh, colic etc are often due to food allergies.
3. A tendency to go for a particular food. One of the interesting aspects of allergy is that
sufferers often crave the very food to which they are allergic. This was illustrated by one
patient who told me that when he died he wished to take a cow to heaven with him. It was
dairy which was his main problem!
4. Symptoms changing with time. Often the allergen is the same, but the symptom changes
through life starting with colic and projectile vomiting as a baby, followed by toddler
diarrhoea, catarrh and recurrent infections, growing pains, headaches, depression, irritable
bowel syndrome, PMT, asthma, irritable bowel syndrome, arthritis etc and eventually fatigue.
5. A positive family history. So often it is not so much problems which run in families but
answers to problems. I have yet to find a patient who is dairy allergic who does not have a

46
first degree relative (parent, sib, child) who also has symptoms caused by dairy products!

Tests for food allergy are notoriously unreliable and at the end of the day one has to do an
elimination diet. I use a “Stoneage Diet” which cuts out the major allergens. It is a best guess diet
and will not identify every allergic simply because some people are multiply intolerant. However for
those people I do not like them to do a more restricted diet because if they cut out too much they
risk ending up eating nothing. These allergics I start on desensitisation sooner rather than later.

However in practice I give nearly all my CFS patients a combination of a Stoneage diet combined
with a diet of low glycaemic index and most people, if they can stick to it, get substantial
improvements on the following:

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THE DIET FOR CFS – This combines the above principles of cutting out common allergens, eating
foods of low glycaemic index in the day, moderate GI index in the evening, eating foods of low
fermentable substrate as well as avoiding chemicals in foods (additives, colourings and flavourings).
Actually in the long term I see this as a diet for life. My view is that we should be mimicking
Stoneage principles – the following is the Evolutionary correct diet. Once established one does not
have to follow it slavishly – but it should make up our staple diet and ultimately the forbidden foods
should become treat foods not staple foods.

Allowed Foods in the day


Any meats – such as chicken, beef, lamb, pork, turkey, duck, 'game' meats such as venison,
pheasant, goose etc. Bacon and ham. Salami. Liver, kidney and offal is fine too.
Eggs
Any fish - salmon, mackerel, cod, haddock (care with smoked fish which often contains dyes).
Tinned fish in brine or olive oil is fine. Tinned shrimps, prawns, mussels, cockles etc.
Any green vegetables, brassicas such as cabbage, brussel sprouts, cauliflower, kale etc,
All salads - lettuce, tomato, cucumber, celery, peppers, onion, cress, bamboo shoots etc
French dressing – make your own from olive oil, lemon juice, garlic, mustard.
Any low CHO fruit - apple, pear, orange, grapefruit (no sugar!) – one portion with each meal.
Seeds - sunflower, poppy, sesame
Nuts - peanut, brazil, hazel, cashew, pistachio, walnut etc
Nut and seed butters eg peanut butter, cashew nut butter, tahini.
Herbs, Salt, olives, pork scratchings
Sunflower and olive oil
Soya milk, rice dream milk, soya margarine
Spices: chilli, cumin, ginger, coriander, pepper, cloves etc
Mushrooms

Allowed Drinks in the day


Bottled or filtered water
Herbal tea - eg redbush ("rooibosch, 11 0'clock tea), rosehip tea.

In the evening you can eat all of the above, plus


Rice and potato eg rice cakes or puffed rice from health food shops.
Millet, buckwheat, sago, quinoa.
Banana, avocado, grapes, melon (ie high CHO fruits)
Dried fruit - sultana, apricot, prune, raisin, fig date etc
Pulses - lentil, butter beans, chick peas, flagolets etc
Nut butter spreads, tahini (sesame seed spread).
Grape juice, pineapple juice, apple juice, tomato juice - best drunk diluted.
Mixture of nuts, seeds, dried fruit,
Arrowroot flour - for thickening gravies

Most foods from packets and tins will have hidden additives, so avoid these. ALL OTHER FOODS
ARE FORBIDDEN - this means no tap water, tea, coffee, chocolate, alcohol, wheat (bread, biscuit,
cake, pasta, pastry), rye (Ryvita), oats, corn, dairy products (milk, butter, cheese, yoghurt, dried
milk), vinegar and sugar. Be careful with sausage which contains rusk. Try to avoid drugs and
medicines, many of which contain fillers of corn, lactose, colourings etc.

Plan the diet so you won't be hungry (this is not a slimming diet although people often lose weight as
they lose retained fluids). Choose a time free from social commitments - this diet should be done for
one month.

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If you do have food allergies, you may get worse before improving. This usually lasts up to 4 days. It
may be that you discover that there are foods on the diet that you are reacting to - if so, avoid these
as well. This diet is a 'best guess' based on foods which rarely cause problems, but it is possible to be
sensitive to many foods such as rice or potato.

If the main problem is hypoglycaemia, then it may take several weeks or even months for blood
sugar levels to stabilise. In this event, relax the diet with respect to carbohydrate content. Therefore,
allow yourself a small amount of carbohydrate at breakfast, mid-morning, lunch, mid-afternoon and
evening meal in order to prevent marked hypoglycaemia that will make you worse. By small I mean
small, for example, half a banana or an oat cake or two dried prunes or whatever. It is all about
getting the right balance between protein, fat, fibre and carbohydrates in order to stabilise blood
sugar levels. Everybody is different and you will know that you have arrived because you no longer
crave carbohydrates, sleep is not disturbed, and the symptoms of a low blood sugar disappear.

If you know there are foods on this diet which upset you, then obviously avoid them. The biggest
problem is low blood sugar in the day which can certainly cause fatigue. Eventually the body does
adjust, but in the interim eat very regularly – say every two hours. Aim, like the Chinese proverb, to
breakfast like an Emperor, lunch like a King and supper like a pauper!
Meal Suggestions
Breakfast: Bacon, eggs, fried tomato. Smoked fish (kippers, mackeral with lemon juice).

Lunch: Cold meat, fish (tinned fish in olive oil is fine), prawns, salami, smoked fish, rusk free
sausage (ie 100% meat)
Salad (lettuce, cucumber, tomato, celery, peppers etc), French dressing.
Green vegetables with dairy free margarine
Home-made soup (made from meat stock only with allowed vegetables).
Mixed nuts and seeds as a muesli

Supper: Meat, fish or eggs, potato or rice, any vegetable.


Fruit, soya yoghurt.
Muesli made from rice flakes, millet flakes, nuts, seeds, dried fruit, fresh fruit etc (some health food
shops do "gluten free" muesli with the above ingredients). Use soya milk or fruit juice to wet the dry
cereal. Puffed rice or rice cakes with soya margarine, nut butter. Buckwheat flakes.

Snacks – nuts and seeds (fresh or roasted) – have these to hand at all times to nibble at if you get
hungry

Expect to get worse initially on the diet


Simple food allergy withdrawal symptoms typically last 4 days. Expect to have a headache within 24
hours of starting the diet – this is often a caffeine withdrawal.
Delayed food allergy symptoms can last up to 6 weeks (especially grain sensitivity but also arthritic
reactions)
Hypoglycaemia type withdrawal symptoms can persist for weeks and months

What to do if you are no better on the diet – persist for another two weeks. Some people allergic to
grains can take six weeks to get the full benefit. The two common reasons for not improving are:
1. Because of multiple allergies to foods (so that there is something on the diet that you continue to
react to). In this case consider a rotation diet, or starting on desensitisation.
2. Because of a gut dysbiosis – ie the wrong bugs in the gut. Consider a gut fermentation test or
Comprehensive Digestive Stool analysis to look for parasites, bacterial overgrowth or yeast

49
overgrowth.

If you are improved on the diet – firstly try to establish if you are allergic to any foods by testing
them one at a time. If that food gives no reaction then you can include it in your diet, but continue to
avoid CHO during the day. Some foods usually give immediate reactions (within a few minutes to a
few hours), so test these first. Dairy products and grains often give delayed reactions, so test these
last, over three days.
Day 1 - tap water, black tea, coffee (black),
Day 2 sugar (for example two teaspoonfuls added to fruit – evening time only)
Day 3 – mushrooms, chocolate (plain, eg Bournvilles) evening only,
Day 4 butter on lunchtime vegetables, yoghurt on evening fruit
Day 5 cottage cheese at lunch cheddar cheese in the evening
Day 6 - porridge oats or oat cakes, (evening only)
Day 7 ryvita (evening only)
Day 8- corn flakes, popcorn, sweetcorn (tinned or frozen) evening only,
Day 9 - shredded wheat and/or plain 'water' biscuit and/or pasta (evening only)
Day 10 - bread (yippee! - this also tests yeast)

Some people are 'lucky' and get clear reactions such as sore mouth, indigestion, headache, fatigue,
"brain fag", palpitations, runny nose etc. Sometimes they also find their pulse changes - a change of
10 beats per minute is significant. However many don't see clear improvement and often a diary can
be helpful to detect late reactions or changes in the long term.

Recommended reading: "The Complete Guide to Food Allergy and Intolerance" Brostoff and
Gamlin, £9.99. "Not All In The Mind" - Richard Mackarness
“The Food Intolerance Diet Book" Workman, Hunter and Alun Jones.
Dr Atkins Diet Revolution – Dr Robert C Atkins.
The Detox Diet Dr Paula Baillie-Hamilton 0-718-14545-3 from www.penguin.com

If you wish also to lose weight


As a general principle I don’t like my CFS patients dieting because cutting calories makes you tired,
cold and depressed and you can do without those things! However if you are extremely strict with
CHO, the body switches into a state of ketosis. To burn fats in the body is a two stage process – the
first stage is conversion of fats to ketones, the next is ketones to carbon dioxide and water. Both
stages release energy for the body to use. However the second stage requires some CHS – if there is
none then ketones are excreted in the breath and in the urine – one literally pees out calories. This is
very good for morale when every time you pee you lose calories and weight! To do this diet properly
you really need to get the book Dr Atkins Diet Revolution which goes into detail of exactly which
foods you need. Also I can supply ketostix which measure ketones in the urine and tell you if you are
doing the diet correctly.

Recommended reading:
"The Complete Guide to Food Allergy and Intolerance" - Brostoff and Gamlin, £9.99
"Not All In The Mind" - Richard Mackarness
"The Food Intolerance Diet Book" - Workman, Hunter and Alun Jones.

I am increasingly coming to the view that we should all be aiming to eat a Stoneage diet based on
meat, fish, eggs, nuts, seeds and vegetables with occasional fruit. Foods outside Stoneage principles
should be eaten as treats, not staples. Primitive man only ate fruit once a year and his idea of fruit
would have been crab apples, elderberries, rose hips etc – ie fruits of low GI index. If we all ate a
Stoneage diet we would all substantially reduce our risk of heart disease, cancer, diabetes and other

50
such degenerative disorders.

What to do if the elimination diet does not work


If a patient fails to respond to an elimination diet, this is either because the patient:

is not food intolerant,


is still reacting to something in the elemental diet (multiple food allergy),
has a gut fermentation problem (gut dysbiosis – bacterial, fungal, parasitic)
is reacting to something in the environment – chemicals or moulds
has enzyme or hydrochloric acid deficiency
a combination of these things.

Sometimes it is possible to make an educated guess as to the most likely problem. If you suspect
food allergy is still a problem, then consider either a rotation diet or or a rare foods diet of starting
desensitisation – either EPD or neutralisation. If you suspect a gut dysbiosis, then tests can be
helpful. I am looking for:

Gut parasites – a reliable test for parasites is now available at the London School of Hygiene and
Tropical Medicine. This picks up common parasites such as giardia, amoeba, blastocystis hominis
etc.
Yeast overgrowth or bacterial overgrowth. This can be tested either by doing a gut fermentation test
(measures blood alcohol levels following a glucose load) or a Great Smokies Comprehensive Stool
Analysis. Neither are 100% reliable and both have their limitations, but they give a good guide as to
how to proceed. CDSA sometimes picks up deficiencies of enzymes.

At this point you may need some professional help!

Rotation Diets
The idea behind a rotation diet is that one continues to react to foods that are in the gut for possibly
up to three days. So no food is eaten within that time. Day 1 has a group of foods you are allowed to
eat, then a completely different group of foods for days 2,3 and 4 before repeating the cycle. You can
find an example of a 4 day rotation diet on the website (it could be worse – there are 7 day rotation
diets! If it’s Wednesday it must be parsnip!!!). Or phone the office for a hard copy. Obviously avoid
any foods which you know you are allergic to.

Very Restricted Diets eg lamb, pear and rice


I used to give patients very restricted diets (such as lamb, pears and rice) to sort out their allergies. I
no longer do this for two reasons. Firstly I found a few patients got stuck on a very restricted diet
and were unable to expand it. However I do occasionally do a rare foods diet for a limited period of
time – say two weeks. Secondly I now have a technique called EPD (enzyme potentiated
desensitisation) which turns off food allergies without one having to know what those allergies are. It
can do this because all the different food antigens are represented in the vaccine. I use EPD if I am
convinced that a patient has food allergies but is not responding to the elimination or rotation diets.

The supermarkets are now catching on to the demand for grain free, dairy free and yeast free
products and there is a much better choice of foods than ever before.

Probiotics – Grow Your Own Gut Flora July 2006


In a normal situation free from antiseptics, antibiotics, high-carb diets, hormones and other such
accoutrements of modern western life, babies start life in mother’s womb with a sterile gut. During

51
the process of birth, they become inoculated with bacteria from the birth canal. This inoculation is
enhanced through breast-feeding because more bacteria are picked up from the mother’s breast and
the first milk, namely colostrum, is highly desirable substrate for these bacteria to flourish. We now
know that this is an essential part of immune programming. These essential probiotics programme
the immune system so that they accept them and learn what is beneficial. A healthy gut flora
therefore is highly protective against invasion of the gut by other strains of bacteria or viruses.

If we feed people probiotics which have been artificially cultured, for a short while the levels of these
probiotics in the gut do increase. However, as soon as we stop feeding them, levels taper off and
disappear. This means there is something different between those bacteria that are acquired from
mother and those bacteria which are artificially introduced. It appears that for bacteria to be accepted
into the normal gut and remain, they have to be programmed first through somebody else’s gut (in
this case mother’s). We now know that these educated bacteria can be introduced into another
person’s gut, where they remain even when the administration of these bacteria has ceased.

This therefore explains how it is that the gut flora is so important, but is so difficult to change when
things go wrong. To be effective we need to treat somebody with bacteria which have already passed
through somebody else’s gut and are therefore educated and programmed to remain.

So, when it comes to repleting gut flora, there are two ways that we can go about this – either we
can take probiotics very regularly (and the cheapest way to do this is to grow your own probiotics,
see below) or to take bacteria which have already been programmed. Indeed, this latter technique is
well established in the treatment of Clostridium Difficile (a normally fatal gastroenteritis in humans)
and interestingly in Idiopathic Diarrhoea in horses. In the latter case horses are inoculated with the
bacteria from the gut of another horse. However, and quite understandably, there is an instinctive
revulsion to the idea of copraphagia! Fortunately, we have two knights in shining armour coming to
our rescue in the form of Gary Smith and Paul Jaep and I thoroughly recommend that you look at
their websites. They are in the process of trying to culture bacteria that have already been through a
human’s gut, remove the pathogens (if present) and turn them into a bio-available culture. At present,
this is very much in the formative stages but watch this space! In the interim, the best you can do is
grow your own probiotics since this is a cheap and effective way of sorting the situation out as
follows:

The idea here is to take a substrate on which to grow the bugs and to which one is not allergic and
make your own culture. This means one can swallow high dose probiotics which are alive and
kicking (so much better able to colonise the gut) and they can be eaten regularly throughout the day
very cheaply and deliciously. It also means that on what ever you grow the culture, the sugar is
fermented out of it and so this provides a good low glycaemic index food. This inhibits fermentation
by yeasts. Furthermore, probiotics convert sugars and starches in the gut into short chain fatty acids,
which are the preferred fuel for mitochondria – therefore, anyone with a tendency to hypoglycaemia
will find their symptoms greatly reduced. Even for normally healthy people probiotics will stabilise
blood sugar levels and reduce risk of obesity, diabetes, Syndrome X, PCOS and all those problems
arising from a hypoglycaemic tendency.

The sort of problems I expect to see in people with abnormal gut flora result clinically from the
fermentation of sugars and starches by yeasts, which form alcohol and wind. They are:
Gut symptoms - irritable bowel syndrome (alternating constipation or diarrhoea, wind gas, pain),
stools like pellets, foul smelling offensive wind, indigestion, poor digestion, constipation;
Tendency to low blood sugar with carbohydrate craving;
Tendency to “candida” problems – such as thrush, skin yeast infections;
Tendency to develop allergies to foods;

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Leaky gut (positive PEG test).

Any probiotics on the market can be used to start the culture going - you may have to experiment
with different probiotics to find one that really suits. I have experimented with BioCare bio-
acidophilus, but you could use any commercial preparation that is alive. You could try starting with
plain live yoghurt, but the bacteria in yoghurt may be chosen for its ability to make tasty yoghurt
rather than what is good for your gut! One of my patients swears by Kefir (www.thekefirshop.co.uk
- you need a Paypal account to pay online, www.kefir.net ), for others Kombusha does the job!
Indeed, this idea of using fermented foods is very popular in many human societies and is associated
with long and good health!

The basic principles of growing cultures are simple and once it has been started it can be continued
indefinitely.

1. Buy yourself a “yoghurt maker” to keep the culture warm – either electric or a vacuum flask
type is fine – follow manufacturer’s instructions.
2. Find a suitable substrate on which to grow the culture – almost anything will do – milk, soya
milk, rice milk, nut milks, hypoallergenic baby milks (such as Nutramigen or Pregestimil). If
the milk is non-sterile then it needs boiling first to get rid of any bugs you don’t want. I am
idle and use either dried baby milks, or long life organic soya milk. You could use fruit juice,
but I would suggest adding in some pre-biotics such as fructo-oligosaccharides (from
BioCare) that the bugs can ferment (I’ve not tried this yet).
3. Add your chosen culture (1/2 teaspoon probiotics in 1/3 pint milk or other substrate), wait 8-
24 hours and eat it! Find the optimum time that the culture needs to mature and turn into
yoghurt. Save a little bit of one culture to make up another brew.

One idea I am playing with is the possibility of adding vitamins and minerals to the culture. The idea
here is that they may be incorporated into the bacteria and thereby enhance the absorption of
micronutrients. You could try this if you do not tolerate supplements well. Indeed, this is already
established practice in animal welfare and probiotics are actively marketed to the horse industry for
this very reason. Furthermore, probiotics are routinely used in the pig industry to prevent post-
weaning diarrhoea. Anyone who has to take antibiotics for any reason should take these cultures as a
routine to prevent “super-infection” with undesirable bugs. These cultures are also an essential part
of re-colonising the gut following gut eradication therapy.

TREAT THE MITOCHONDRIAL METABOLIC DYSLEXIA


However, despite doing the above, I am still left with a hard core of patients that I still struggle with.
This is where direct micronutrient support for mitochondria may prove to be an extremely useful
intervention. I have learned what to do through reading a book “The Sinatra Solution” produced by
an American metabolic cardiologist, Dr Stephen Sinatra, who has used these techniques for treating
patients with heart disease such as congestive cardiac failure, angina, arrhythmias and so on. Sinatra
worked initially using entirely conventional techniques – drugs, pacemakers, surgery or whatever.
However, he realised that cardiac disease was not all about poor blood supply to the heart. For many
the problem was heart muscle disease due to mitochondrial failure. Once he tackled this aspect,
patients made dramatic recoveries, were able to come off medication, avoid surgery and return to
their normal jobs and sporting activities. To understand his ideas, you need to understand a little bit
about how mitochondria work.

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How Mitochondria Actually Work
The job of mitochondria is to get the energy contained inside foods (ie sugars and fats) and convert it
into a form the body can use, i.e. NAD and ATP. This requires a series of reactions, firstly Kreb’s
citric acid cycle (for the chemists in the audience!) which produces NAD and this is used to power
oxidative phosphorylation which generates ATP, the universal currency of energy. With plentiful ATP
the body can literally do anything! These reactions require enzymes, which are made up of many
different vitamins, minerals, fatty acids and amino acids. However one of the most important electron
handlers is Co Enzyme Q 10.

Once ATP has been made, it then has to be delivered to where it is needed, ie out of the
mitochondria, through its membrane. This it does with a shunting reaction. ATP is made inside
mitochondria from ADP and has to be shunted across the mitochondrial membrane so the cell can
use the energy in the ATP by converting it back to ADP. ADP then needs to be shunted back across
the mitochondrial membrane. This shunting reaction involves translocator protein OUT, which
effectively shunts energy in the form of ATP from inside mitochondria, through the mitochondrial cell
membrane into the cell, where it gives up its energy and converts to ADP. Translocator protein IN
then shunts ADP back through the mitochondrial membrane, where it is reformed into ATP.
Obviously, if this shunting reaction does not run smoothly, energy supply will be impaired.

All the molecules involved here are re-cycled. There is another essential element which is
magnesium. If you think of glucose and short chain fatty acids as the fuel of the engine, acetyl L-
carnitine and Co-enzyme Q10 are the oil and magnesium is the spark plug!

In order to make new ATP, one needs a sugar, namely D-ribose. Normally the body can manufacture
this for itself from glucose, but if energy levels are very low, then it may be unable to synthesise this
essential sugar. So when the CFS sufferers push themselves too much, ADP is converted into AMP,
which they cannot recycle. It normally takes a few days to make new ATP from D-ribose, but the
CFS sufferers may really struggle to make D-ribose. Indeed I now have many patients who get well
simply by taking D-ribose.

In order to make new NAD one needs vitamin B3 as well as a functioning Kreb’s citric acid cycle –
so NAD levels are a measure of B3 status as well as a functional test of acetyl L carnitine.

All this can be looked at by doing ATP profiles testing

Thank you very much John McLaren Howard for checking this handout and adding in essential
details which I did not appreciate the significance of!

Interpretation of ATP Profiles and implications for treatment September 2005


The ATP profiles test is a measure of mitochondrial function. The only job of mitochondria is to
provide energy for cell metabolism in the form of ATP. Whilst all cells of the body are different,
mitochondria are the same and so this test has huge implications not just for CFS but also for the
pathophysiology of many degenerative diseases such as heart disease, Alzheimer’s, Parkinson’s and
many others. Indeed it is the rate at which mitochondria slow down and degenerate which determines
the natural ageing process. There is now good evidence that the basic pathophysiological defect in
chronic fatigue syndrome is slow recycling of ATP and this elegantly explains the symptoms of CFS.
ATP profiles can therefore be used to make the diagnosis of CFS, to assess the level of disability
objectively, to identify where the biochemical lesion lies and give pointers as to how to further
elucidate and correct that biochemical lesion.

The biochemical lesion may result from a nutritional deficiency, from a stress (which may be

54
endogenous free radical stress, or exogenous toxic stress) or from a metabolic dyslexia – i.e. some
enzyme block which inhibits the production of essential nutrients. The best documented is enzyme
blockage by statins which inhibit the endogenous production of co-enzyme Q 10, the most important
acceptor and donor of electrons in Krebs citric acid cycle (oxidative phosphorylation). Not only do
statins almost invariably worsen fatigue syndromes but probably also accelerate the normal ageing
process.

Levels of ATP
The first thing to look at are the absolute level of ATP. This suggests two things. Firstly poor
ability to make de novo ATP from its raw material, D-ribose. D-ribose in an individual with
normal metabolism can be made from glucose via the pentose phosphate shunt. However if this is
malfunctioning, D-ribose is made slowly. Indeed this probably explains the delayed fatigue in CFS.
The treatment is to supplement with D-ribose starting with three teaspoonfuls daily (15gms) and
adjusting according to response. Sufferers often see changes within a few days. Clinically I expect
to see less delayed fatigue and improvement in muscle pain and aching. D-ribose has a very short
half life and should be taken in small doses throughout the day in drinks (hot or cold). Interestingly caffeine
enhances the effects of D-ribose so I recommend taking with green tea, coffee, tea or whatever. It is worth
supplementing D-ribose even with low normal results because I have so much happy feedback from
patients taking this supplement.

Secondly low levels of ATP may mean that the sufferer is not pacing properly. When one overdoes
things, ADP is created faster than ATP can be made. This results in a build up of ADP and some is
inevitably shunted into AMP (the monophosphate) which cannot be recycled. Thus the cell has to
make de novo ATP from D-ribose.

Release of energy from ATP


Next look to see the rate at which ATP is converted to ADP. This is a magnesium dependent process,
and if slow results from magnesium deficiency. Since being interested in fatigue syndromes since
1982, magnesium is the knottiest problem I have come across! I now know why. Low intracellular
magnesium is a symptom of CFS and a cause of it. This is because 40% of resting energy simply fires
Na/K and Ca/Mg membrane ion pumps. So when energy supply is diminished there is insufficient to
fire these pumps, so magnesium cannot be drawn into cells for oxidative phophorylation to work , so
there is a further diminishing of energy supply. This is just one of the many similar vicious cycles in
CFS.

Sufferers do not simply replete through taking magnesium supplements – although this must be tried!
Some need magnesium by injection to get the desired result. I usually start with 2mls of 50% Evans
magnesium sulphate weekly and adjust the dose according to clinical response. But now I find it
much less painful to inject smaller amounts (say 1/2ml) every day using a fine insulin syringe with a
little bit of lignocaine – this makes it virtually painless.

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Movement of ATP and ADP across mitochondrial membranes.
This is dependent on translocator protein which sits in the mitochondrial membrane and shunts ATP
and ADP to and fro. If this is malfunctioning then it suggests blockage by some sort of toxin. As yet
we are not sure which are the most likely toxins involved but this will become apparent with time and
experience. Many toxins can do this, they could be endogenous toxins (from free radicals) and they
could be exogenous from heavy metals, pesticides, VOCs or whatever. However these exogenous
toxins can all be got rid of by sweating regimes. Exercise is obviously the most physiological method
but impossible for CFS sufferers! I would recommend a sweating detox at least three times a week
and my preferred technique is with far infra-red saunaing. (See FIR sauna information).

TL protein function is an area where more research is being done, but another possible reason for TL
protein blockage is intracellular acidosis. This can occur with hyperventilation which, I suspect, is much
more common in CFS than realised. Hyperventilation causes a respiratory extracellular alkalosis, and
intracellular acidosis – these changes can occur within a few abnormal breaths (see hyperventilation
section).

We now have a new test of translocator protein function which can explore the precise reasons why there is
blockage. Clinically I have found this a very useful test.

Oxidative phosphorylation – the recycling of ATP from ADP


Look at the rate at which ADP is converted to ATP. The whole process is done by oxidative
phosphorylation and carried out in Krebs citric acid cycle (dig out those old “O level” biochemistry
books at once!). There is lots of potential for things to go wrong here! The bits we know about (and
there will be others!) which may make oxidative phosphorylation go slow include:

Vitamin B3 is vital as the raw material to make NAD – most people replete on 500mgs of
niacinamide, but some people seem to need 3,000mgs daily to get a result. At levels above 500mgs,
liver function tests need checking every month for three months then every 6 months. Low B3 may
also be a symptom of acetyl L carnitine deficiency. This is because NAD is a functional test. Whilst it
reflects B3 status, it also reflects function of Kreb’s citric acid cycle. The job of KCA is to take
energy from acetyl groups and convert it into NADH, which is then of course converted to NAD in
the process of driving oxidative phosphorylation. Therefore to see normal levels of NAD needs not
only an adequate supply of B3, but also a functioning Kreb’s citric acid cycle. So a low NAD may
(amongst other things) also imply poor acetyl L carnitine levels.
Magnesium deficiency – Mg catalyses many reactions in KCA cycle. Mg may have to be given by
injection to replete levels.
Acetyl L carnitine - to get fuel for oxidative phosphorylation to burn, one needs it to be transported
across the mitochondrial membrane by acetyl L carnitine. This is normally present in mutton, lamb,
beef and pork. If these foods are not consumed then I recommend taking acetyl L carnitine 2 grams
daily.

However clinical experience, which I have nicked from the American Cardiologist Dr Stephen
Sinatra, is that co-enzyme Q 10 is vitally important as the main shunter of electrons in oxidative
phosphorylation. Funnily enough I sometimes see normal ATP production but low levels of co-Q 10
which suggests to me that co-Q 10 is not directly involved in oxidative phosphorylation. I suspect
co-Q 10 is an important antioxidant which prevents free radical damage. Furthermore poor
antioxidant status slows oxidative phosphorylation so I routinely recommend B12 injections when
ADP to ATP conversion is slow. Again these can be given by 1/2ml injections which are virtually
painless.

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It is possible to see a normal rate of oxidative phosphorylation in someone who is pacing well.
However if that sufferer should push themselves, abnormalities would appear. So just because
oxidative phosphorylation is OK does not mean you can give up pacing!

Secondary damage
If you burn fuel to produce energy you make smoke. One cannot create energy without smoke
damage in the form of free radicals. Co-Q 10 is a vital scavenger of electrons which prevents
secondary free radical damage. So it is well worth measuring co-Q10 levels and clinical experience is
that levels should be above 2.5 umol/l.

However if oxidative phosphorylation goes really slow, this may because of poor antioxidant status
resulting in excessive levels of free radicals, in particular superoxides and nitric oxide. These two free
radicals stick together to make peroxynitrite which is even more toxic. These quickly use up
available antioxidants. So if ATP production is slow it is worth also measuring superoxide dismutase
(to mop up superoxides), giving B12 by injection (which mops up nitric oxide and peroxynitrite)
measuring glutathione peroxidase and possibly giving vitamin C to bowel tolerance, and vitamins E
and A. There are many natural antioxidants in nuts seeds and vegetables, hence the benefits of a
wholefood diet, juicing etc.

Antioxidants to consider are:


Superoxide dismutase
Glutathione peroxidase – this requires selenium 200mcgms daily and amino acids for its synthesis (high
protein diet).
Co-enzyme Q 10 - is the most important antioxidant inside mitochondria (see above)
B12 – this is an excellent scavenger of the free radical peroxynitrite and may take over some of the
function of SODase if this is very deficient – it provides instant antioxidant cover
Other antioxidants also important as mentioned above – acetyl L carnitine, NAD (especially in the brain).
Also vitamins A, C and E are essential antioxidants. Natural antioxidants are also present in vegetables,
nuts and seeds.

Tertiary Damage
If free radicals persist, they damage the cell. This may initially just be enzyme damage which makes
the cell go slow (and worsens all the above problems) or actual structural damage even resulting in
cell death. If the cell dies it releases its contents into the blood stream. John McLaren Howard can
test for this by measuring cell free DNA in the blood. Cell free DNA is a measure of tissue damage.
When tissues are damaged, cells rupture and release their contents into the blood stream as
fragments. These fragments include DNA, so when this is found not contained within a cell
membrane, it is as a result of tissue damage. Cell free DNA is raised in, for example, tissue damage
due to sepsis, trauma, cancer, radiotherapy, chemotherapy and other such pathologies. It is also
raised in CFS and accurately reflects the degree of fatigue. A high cell free DNA therefore tells us
something is going very wrong such as:

f) There is poor antioxidant status (see Co Q 10, SODase, GSH-PX),


g) There is ongoing toxic stress (such as from pesticides, volatile organic compounds, heavy
metals etc),
h) There is immune activation (as for example in acute infection),
i) There is very poor mitochondrial function (see mitochondrial function) score but the
patient is forced to do some muscular activity just in order to live.
j) The patient is not pacing well – i.e. pushing too hard and this is resulting in cell damage.
However some people who are very disabled have no choice – just the energy required to
exist will cause tissue damage. So people with the worst mitochondrial function score
often have high cell free DNAs even though they are doing almost nothing.

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All these issues need addressing!

THE CELL FREE DNA TEST PUTS CHRONIC FATIGUE SYNDROME FIRMLY IN THE
CAMP OF SERIOUS ORGANIC DISORDERS

The problem with high levels of cell damage are:


It takes time for new cells to be made and this may partly also explain the delayed fatigue in CFS.
The immune system may react against these bits of cell floating about thereby switching on allergies.
In trying to deal with these bits, the immune system damages even more cells if their superoxide
dismutase is low. This becomes a serious vicious cycle.
The immune system may react against these bits of cell floating about thereby switching on
autoimmunity.

THESE ARE DISEASE AMPLIFYING EFFECTS! Ie you make yourself worse if you don’t pace.
Ie EXERCISE REGIMES ARE POSITIVELY DANGEROUS!!!

The Mitochondrial Function Score


I am now able to score the mitochondrial function tests in order to give an energy score. I have
now done well over 200 of these tests, and the mitochondrial energy score accords closely with
the level of disability. This score takes into account the levels of ATP, how well it releases energy
(a magnesium dependent process), how efficiently oxidative phosphorylation works as well as
translocator protein function. This give me an objective measure of the level of fatigue – that is to
say I can tell you how fatigued you are! If you look at the very end of this book you will find the
paper where I graph the mitochondrial function scores against the level of disability. There is a
very close correlation. It also tells you how I calculate this score.

If the score does not fit clinically, then this may well be because of tissue damage. Many CFS
sufferers push themselves to do things at the expense of damaging their tissues. So they can chose
between feeling better and doing very little, or having a life and feeling terrible. Most do the
latter. So the mitochondrial function score is a measure of how much energy they have got to
spend and the cell free DNA a measure of how well they feel.

IN CFS THERE IS A BALANCING ACT BETWEEN ENERGY LEVELS AND CELL


DAMAGE – MOST PEOPLE GET THIS WRONG, OVERDO THINGS AND END UP
WITH TISSUE DAMAGE WHICH IS A DISEASE AMPLIFYING EFFECT.

Correcting the Biochemical Blocks


A running team can only go as fast as the slowest runner. The same is true in biochemistry. If one
corrects one aspect of what is going wrong, one may not see improvements because suddenly
another rate limiting step becomes apparent and the sufferer is slowed for another reason. So it is
vital to keep the regime tight and in place as long as possible. For example it is no good getting the
biochemistry perfect if you then can’t sleep! That alone would cause fatigue. So as well as putting in
place all the nutritional supplements it is vital to continue with PACING, DIET and SLEEP.

TO SUMMARISE AT THIS STAGE


Although the regimes seem complicated, it is simply like getting a car engine to work. It is no good just
filling the tank with fuel, or just unblocking the fuel pipe, or doing any one of the necessary jobs such as
cleaning the spark plugs, unblocking the air filter, filling the engine with oil, unblocking the exhaust pipe
etc on its own – one has to do all these bits in order to make it run. I have to say I have had such happy
feedback from patients able to complete the regime that it is really well worth working hard at. The above
recommendations have to be done in conjunction with my basic work up of all CFS sufferers with respect

58
to:

1. PACING,
2. MICRONUTRIENTS – multivits, multimins, EFAs, vit C and D
3. SLEEP – aim for 9 hours between 9.30pm and 6.30am
4. DIET (low GI diet which avoids the major allergens) and PROBIOTICS

Once these “cornerstones” of recovery are in place, one should then introduce the other elements of the
overall regime i.e.

(a) Correcting mitochondrial function D-ribose, Mg injections, NAD 500mgs, acetyl L carnitine,
meat, Co Q 10.
(b) Addressing poor antioxidant status - B12, Co Q 10, SODase, glutathione peroxidase
(c) Detox regimes where appropriate – i.e. sweating techniques
(d) Identifying chronic infections
(e) Correcting secondary hormonal lesions in particular secondary hypothyroidism, secondary
hypoadrenalism and poor melatonin levels.
(f) Tackling hyperventilation

I know I am asking for much to be done and it maybe there is insufficient energy to put in place all the
interventions required at once. Furthermore some of my very tender flowers do not tolerate all the
interventions at once and so one has to progress slowly. I like to see patients to get the regime in place and
get the regime as tight as possible with respect to all the problems identified. Then I like them to be feeling
well at rest. Then, and only then may they risk trying to do a little more, but this must be on the proviso
that any loss of stamina or delayed fatigue and they must pull back again.

The Energy Balance in CFS


John McLaren Howard points out that it is vitally important for treatment to recognise that all
patients with CFS are in some sort of energy equilibrium, which is a very delicate one. Indeed, it is
quite shocking from the results seen so far how critical that situation is. It is a marvel of human
metabolism and the human spirit that patients with these very severe results manage to exist at all!
For example, the cell free DNA results give similar results to patients on cancer chemotherapy – and
everyone knows how ghastly they feel and how little they can do!

When a blood sample is taken for the mitochondrial function test, often the patient is only just
coping. It reflects the energy balance at that time. However, if the patient starts to increase activity
then one may see a very different result as the system may collapse under the extra strain. This is a
bit like doing a resting ECG for heart disease – it is an almost useless test – it is only when one
stresses the system with an exercise ECG that one sees ischaemic changes or dysrhythmias.

Pacing
One final word about PACING, and this applies to people who do not suffer from CFS. If you push
your mitochondria too much, you will cause a disproportionate amount of damage because of the
secondary and tertiary effects – just because you feel better, do not be tempted to do too much – or
you will simply create damage elsewhere and postpone your recovery further! If my horse has
worked hard during a long day hunting, she has complete rest in the field with lots of good food for
four days before being ridden again. That way she stays fit and healthy! So the key is:

GET THE REGIME TIGHT, then


FEEL WELL AT REST. You must feel well at rest for some weeks before you dare try increasing
your level of activity. If you do too much too soon, you will simply trigger a biochemical and clinical
collapse. Then

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GRADUALLY INCREASE ACTIVITY SO LONG AS THERE IS NO DELAYED FATIGUE.

Further Implications for Treatment - details


If the body is functioning normally and has access to all essential minerals, vitamins, essential
fatty acids and amino acids, it can make all these essential ingredients, in particular co-
enzyme Q 10, acetyl L-carnitine and D-ribose. Magnesium must be supplied from the diet or
supplements. This explains why most patients get well on my standard work up of treatment
because this supplies all the essential ingredients for the body to heal itself.

However, for those who do not get well, it is likely that there is some sort of metabolic defect which
prevents them from manufacturing these essential ingredients. I call this metabolic dyslexia! It may
well be that genetically poor mitochondrial function alone is the problem, or there may be toxins or
pesticides stuck in the system which stop the mitochondria functioning properly. It may well be that
once the patient has dropped below a certain critical level, all cellular processes are going so slow
that the sufferer is unable to manufacture the very things required to restore health. With age, our
metabolism becomes less efficient anyway and we may need more raw materials in order to maintain
the status quo.

Incidentally this helps explain why some CFS sufferers have such problems with drug medication and
indeed this may help to point towards treatment. All my CFS patients feel much worse on statins
because these stop the body from making its own Co Q 10. Beta blockers, tricyclic antidepressants
and phenothiazines also block Co Q 10 synthesis.

Sources of supplements
Co-enzyme Q 10 100-400mgs daily. This must be in a hydrosoluble or oil form or it is not well
absorbed. Co Q 10 is fairly widely available – see www.puritan.com or Lamberts 01892 554 312 do
a preparation of 100mgs Co Q 10. Shop around for a good price! To order from Lamberts, quote my
postal code or phone my office for an account number to give to the Lamberts telephone team. Or I
can supply – I shop around and buy in bulk in order to give my patients the best deal. Getting well
from CFS does not come cheap!
Acetyl L-carnitine 2gms daily – this is an amino acid with highest levels in meat. This may explain
why vegetarians are at risk of CFS. It also partly explains why my CFS patients do best on high
protein diets. I can supply 120gms for £12 to my patients only. Also eat red meat (the word carnitine
comes from carne – meat) or take 2 g on the day when you have not eaten red meat.
D-ribose 5-15gms daily – needs to be taken throughout the day. I can supply to my patients cost £23
for 500grams (100 teaspoonfuls) plus £4 p and p.
Niacinamide 550mgs available from Solgar 01782 634 744. Also see www.puritan.com I can supply
Magnesium in Myhill’s Magic Minerals (or other such mineral supplement) but need a medical
practitioner’s letter in which he/she recommends it for you if you are not my patient. But if there is a
severe deficiency, then magnesium by injection may be required.

How long before you see improvement?


Not sure at the moment. However, heart transplant patients whose cardiac output is improved
overnight can take up to a year before they start to feel fully well again. However, I would expect
sufferers to see improvements after a few weeks of supplements. Some take months.

What is important is that these interventions are done in combination with all my other
recommendations with respect to diet, micronutrients, pacing, sleep, detoxing, etc. Firstly get
the regime tight, then start to feel better and then start to increase activity.

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D-Ribose
The pathological defect in patients with chronic fatigue syndrome is slow recycling of ATP.
Normally there is enough ATP in a heart cell to last about ten beats – this means that roughly
speaking ATP needs to be re-cycled every ten seconds. Steve Redgrave probably recycles ATP every
five seconds, but patients with fatigues may be recycle ATP every minute. Therefore I can do in ten
seconds what Steve Redgrave can do in five seconds, but it might take one of my fatigue syndrome
patients a minute to achieve the same!

ATP in releasing energy is converted to ADP (2-phosphates) which is recycled back through
mitochondria to ATP (3-phosphates). However, if the system is really pushed then the body can
extract energy from ADP by converting it into AMP (1-phosphate). The problem is that AMP is very
slowly recycled if at all and most is lost from the cell. This means that the body has to make brand
new ATP. This it does from D-Ribose and this it can do very quickly. The trouble is the body
making D-Ribose. Normally this is made from glucose. However if the cell is lacking in energy then
any glucose lying around can be converted to lactic acid to generate energy. The problem here is
twofold – first of all the lactic acid causes pain. Secondly any glucose that is swilling around is not
available to make D-ribose.

Even when glucose supply is plentiful, production of D-ribose in the cell by the glucose pentose
shunt is very slow. It looks like when the Almighty designed the cell at a metabolic level there were
some fundamental faults!

D-ribose is therefore useful for at least three reasons:

1. It is immediately available for the generation of new ATP


2. It helps re-cycle AMP and thereby re-convert it back to ADP and ATP
3. It has antioxidant properties, i.e. the effects of many damaging substances on cells can be
negated

Because D-ribose is a simple sugar, it is extremely well absorbed. The clinical experience of
cardiologists using D-ribose to treat heart failure due to mitochondrial failure is that it is very
effective and free from side effects. The dose depends on the severity of the illness, but the clinical
experience is that sufferers should be started on high doses and then it can be adjusted to a
maintenance dose. Therefore I recommend that my CFS patients use 5 grams (1 scoop) three times
a day, with food or fruit juice. Actually it’s even better if small amounts are used more regularly – eg
1/3 of a teaspoon with a drink, hot or cold. Effects should be seen within a few days. Whilst levels
of energy improve and continue to improve then I recommend staying on 15 grams daily. At the
point at which it levels off, experiment with lower maintenance doses. However, should the sufferer
overdo things on a particular day then it is as well to take extra D-ribose in order to rescue the
situation.

D-ribose is going to work best when the other aspects of mitochondrial metabolism are addressed,
namely Co-enzyme Q10, acetyl L-carnitine, magnesium and vitamin B3.

Anything which can be done to prevent damage to mitochondria will also be extremely helpful.
There are many ways in which mitochondria can be damaged such as viral infection, pesticides,
heavy metals, hormone imbalances, allergies, low blood sugar or high blood sugar, micronutrient
deficiencies, lack of sleep, etc. D-ribose is, therefore, an adjunct to my standard work up for treating
chronic fatigue syndrome. Clinically I expect D-ribose to improve the symptom of delayed fatigue in
sufferers as well as improve stamina.

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I have already had several patients come back to me “D-ribose is rocket fuel”!

Co-enzyme Q10 in Chronic Fatigue Syndrome


Chronic fatigue syndrome is a symptom of mitochondrial failure, resulting in poor production of ATP
which is the currency of energy in the body. To produce ATP, mitochondria need certain essential
raw materials, namely Co-enzyme Q10, D-ribose, L-carnitine, magnesium and vitamin B3.

In a normal healthy person, Co-Q10 can be synthesized, but it requires the amino acid tyrosine, at
least eight vitamins and several trace elements. Vitamins include folic acid, vitamin C, B12, B6 and
B5. Synthesis of Co-Q10 is inhibited by environmental toxins and chronic disease. I am coming to
the view that many of my CFS patients are metabolically dyslexic – that is to say even when all the
raw materials are available, they cannot make their own Co-Q10 in sufficient amounts and therefore
levels need to be measured and supplemented. Certainly when I check blood levels it is very common
to find very low levels of co Q 10. Co Q 10 is the most important antioxidant in mitochondria and
since it is the rate at which mitochondria fail which determines the normal ageing process, it may
well be that co Q 10 is a vital anti-ageing molecule!

The question is how much Co-Q10 should be given. The normal range in blood given by Biolab
Medical Unit is 0.55 – 2.0 mmol/L. This is equivalent to 0.637 – 2.3 μg/ml. However, Co-enzyme
Q10 has been widely used in the treatment of heart failure, which we now know is what happens in
patients with chronic fatigue syndrome. There have been a great many studies done looking at Co-
enzyme Q10 levels in heart disease and although the optimal dose of Co-Q10 is not known for every
pathological situation, most researchers now agree that blood levels of 2.5 μg/ml and preferably 3.5
μg/ml are required to have a positive impact on severely diseased hearts.

Clearly not all patients I see with chronic fatigue syndrome have severely diseased hearts, but my
view is that we should be aiming for a level of 2 – 2.5 μg/ml (i.e. 1.72 – 2.15 mmol/L – the Biolab
units) in order to stand a chance of seeing a therapeutic response.

Again, the dose of Co-Q10 in order to achieve a response has been worked out for cardiac patients
and this varies from 200 – 600 mg daily.

It is important that a hydro-soluble form of Co-enzyme Q10 is used in order to ensure good
absorption. But it is expensive – the cheapest source at present is from www.puritan.com I also
recommend Lamberts Co-enzyme Q10 100 mg – my patients qualify for trade prices (Lamberts tel:
01892 554 312 – you need to give them my postal code or my account No. – phone my office to
check this information). The absorption of Co-Q10 can be improved if it is taken with a fatty or oily
meal. Or you could empty a capsule into a teaspoon of olive oil before swallowing the lot. It is
possible for Co-Q10 to be prescribed on NHS Prescription! Co-Q10 is not in the British National
Formulary, but it has not been blacklisted in capsule form, so is prescribable. If your GP is willing to
help, then ask him to prescribe ubidecarenone 100mg capsules. The chemist can order any brand
that is available to him and the Prescription Pricing Authority will honour the prescription.

So I am estimating that the following doses of Co-Q10 will be required:

Blood levels Co-Q10 1.5 – 2.0 umol/l 100mg Co-Q10


Blood levels Co-Q10 1.0 – 1.5 umol/l 200mg Co-Q10, split the dose: 100
mg twice a day
Blood levels Co-Q10 0.5 – 1.0 umol/l 300mg Co-Q10, split the dose: 100
mg 3 times a day
Blood levels Co-Q10 <0.5 umol/l 400mg Co-Q10, split the dose:

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200mg am, 100mg lunch, 100mg
evening

Once a therapeutic effect has been achieved, then it should be possible to reduce the dose to a lower
maintenance dose, but a blood test may be required to re-check that levels are adequate.

Co-Q10 can be expected to work best in conjunction with magnesium (available in the MMMs), D-
ribose (see enclosed handout), acetyl L-carnitine (also available through eating red meat, especially
mutton, lamb, beef and pork – but to get 2 grams you need to eat about a pound of meat a day!) and
NAD (levels can be measured, but most people need 500mg of NAD daily - available from Solgar on
01782 634744 and www.puritan.com).

It may take up to 30 days to get blood levels up to a good level and therefore start to see clinical
response. Most studies of use of Co-Q10 in heart disease assess patients at three months. I would
also expect to see improvements in heart related symptoms such as chest pain, dysrhythmias,
exercise tolerance, shortness of breath and mitral valve disease. There are virtually no side effects.

Reference:
The Sinatra Solution Metabolic Cardiology Stephen T Sinatra Available from Amazon

Acetyl L Carnitine In CFS


The following is a study which looked at the effect of L-carnitine CFS. This was the only
intervention made, (amantidine an antiviral was also looked at) but remarkably there were still good
results as follows:

Neuropsychobiology. 1997;35(1):16-23
Amantadine and L-Carnitine treatment of Chronic Fatigue Syndrome. Plioplys AV, Plioplys S.
Chronic Fatigue Syndrome Center, Department of Research, Mercy Hospital, Chicago, IL 60616,
USA
Carnitine is essential for mitochondrial energy production. Disturbance in mitochondrial function
may contribute to or cause the fatigue seen in CFS patients. Previous investigations have reported
decreased carnitine levels in CFS. Orally administered L-carnitine is an effective medicine in
treating the fatigue seen in a number of chronic neurological diseases. Amantadine is one of the
most effective medicines for treating the fatigue seen in multiple sclerosis patients. Isolated reports
suggest that it may also be effective in treating CFS patients. Formal investigations of the use of L-
carnitine and amantadine for treating CFS have not been previously reported. We treated 30 CFS
patients in a crossover design comparing L-carnitine and amantadine. Each medicine was given for
2 months, with a 2- week washout period between medicines. L-carnitine or amantadine was
alternately assigned as first medicine. Amantadine was poorly tolerated by CFS patients. Only 15
were able to complete 8 weeks of treatment – the others had to stop taking the medicine due to side
effects. In those individuals who completed 8 weeks of treatment, there was no statistically
significant clinical improvement in any of the clinical parameters that were followed. However, with
L-carnitine we found statistically significant improvement in 12 of the 18 studied parameters after
8 weeks of treatment. None of the clinical parameters showed any deterioration. The greatest
improvement took place between 4 and 8 weeks or L-carnitine treatment. Only 1 patient was unable
to compete 8 weeks of treatment due to diarrhoea. L-carnitine is a safe and very well tolerated
medicine which improves the clinical status of CFS patients. In this study we also analysed clinical
and laboratory correlates of CFS symptomatology and improvement parameters.

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July 2006
The regime of nutritional supplements for patients who have done the
mitochondrial function test and require the whole package of supplements!
Some supplements have more than one function – eg CoQ10 is essential for mito function and is also an
important antioxidant. Supplements in italics go into drinks
Standard for all Mitochondrial support Extra Anti-oxidants
Morning
In ½ to 1 pint of water/ Acetyl L-Carnitine 1 gram
some fruit juice dissolve: (1 small scoop)
Ascorbic acid 1 g (1 small scoop)
OR BioCare Vitamin C 500
D-ribose 2.5 grams (1/2 teaspoon)
MMM 2 grams (2 small scoops)
Copper 1mg (4 drops)
(SODase)

Swallow before breakfast with Glutathione 80mgs


the above solution:
BioCare Adult multivitamins x 1 capsule
BioCare Essential fatty acids x 1 capsule
Vit D3 2 caps Co-Enzyme Q10 100mg x 1 capsule
Niacinamide 500mg x 1 capsule

By injection Magnesium sulphate ½ ml B12 ½ ml

Mid morning D-ribose ½ a teaspoon in


tea or coffee

Midday – lunchtime
Dissolve in ½ pint of water D-ribose ½ a teaspoon Glutathione 80mgs (GSH-Px)
MMM 1gram 1 scoop Manganese 5mgs (4 drops)
Ascorbic acid 1gram, 1 scoop (SODase)
OR BioCare Vit C 500

Swallow: Co-enzyme Q10 100mg x 1 capsule

Mid-afternoon Dissolve D-ribose ½ a teaspoon


in tea or coffee
Evening
Dissolve in ½ to 1 pint of water/ Acetyl L-carnitine 1 gram
some fruit juice:
Ascorbic acid 1 gram
OR BioCare Vit C 500
MMM 2 grams D-ribose ½ a teaspoon
With the above solution swallow
the following caps with food: Co-enzyme Q10 100mg 1 capsule Glutathione 80mgs (GSH-Px)
BioCare Essential fatty acids 1 capsule

Last thing at night in water/fruit juice D-ribose ½ teaspoon Zinc 30mgs (8 drops)(SODase)

DETOXIFICATION
DETOX – reduce your chemical load by:

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a) Avoiding alcohol, care with caffeine, many prescription drugs (especially statins, diuretics,
beta blockers, antidepressants, Pill and HRT) make CFS much worse. Don’t take the Pill or
HRT– they worsen CFS in the long term and certainly predispose to getting CFS because
they suppress the immune system and induce nutritional deficiencies. Many IUCDs (coils)
also contain hormones. Depot injections are the worst!
b) Do a good chemical clean up of your environment – throw out all the smellies in your
house, keep the house well ventilated, avoid sprays, polishes, aerosols, new paints, new
carpets, gas cookers and heaters. Don’t forget cosmetics - deodorants nearly all contain
aluminium. Some people constantly wear perfumes and do not realise what a problem they
are until they stop – it is perfectly possible to become addicted to perfume!
c) Consider detoxing with a sweating regime such as FIR. Sweating gets rid of all toxins –
heavy metals, pesticides and volatile organic compounds but it is important to rehydrate with
beneficial minerals since these too are lost in sweat.

We live in an increasingly polluted world containing an increasing number of toxic chemicals which
are toxic to our genes, to our brains, to our internal metabolism and to our immune system. These
nasty chemicals almost certainly account for our ever increasing incidence of cancer and birth defects
and our declining fertility due to life time exposure. I believe they also make us more susceptible to
chronic fatigue syndrome because they are toxic to the immune system, to the brain, to our hormonal
control and our internal metabolism.

It is impossible to completely avoid every chemical – if I did blood tests I would find a wide range of
organochlorine pesticides in everybody. However, anything which can be done to reduce the
chemical load will be helpful in allowing our bodies to recover.

I was very interested by a book recently published “The Detox Diet” by Dr Paula Baillie Hamilton
which explains how chemicals in foods and the air interfere with internal metabolism to make us fat
and lethargic – indeed she points out that farm animals are deliberately fed hormones, antibiotics and
pesticides to make them fat and lethargic – therefore they do not have to eat so much in order to put
on weight (cheap meat!). Many chemicals are persistent and concentrate up through the food chain –
it is very likely that if we were the farm animal we would be declared too toxic to eat.

The following issues need to be addressed to reduce your chemical exposure:

Foods
Choose foods grown as naturally as possible
If organic food is available, go for it
Eat foods as unprocessed as possible – most foods in tins or packages have preservatives or have
been irradiated.
Eat foods which have not been plastic wrapped – the plasticiser gets into food.
Avoid foods wrapped in aluminium foil, or in aluminium cans.
Eat fresh foods – if they have to be stored, deep freezing is probably the least harmful.
Contact the Soil Association or Henry Doubleday Reseach Association.

Water
A clean water supply is essential – the water companies are only interested in bacterial counts – they
will not measure pesticide levels, heavy metals, hormone residues, volatile organic compounds or
fluoride in your tap water. Bottled or filtered water I consider an essential.

Clean Air
If you can smell it, it can make you ill – the obvious offenders are air fresheners, sprays, perfumes,

65
cleaning agents but there are a host of other chemicals in everyday use.
New paints and carpets (especially rubber backed, stuck down) out-gas toxic fumes for months after
– use water based paints where-ever possible.
Pesticides – dog and cat flea treatments, fly repellents, house fumigations, timber treatments all
contain toxic pesticides which persist for months and years.
Gas central heating and gas cookers can make some people ill.
Carbon mono-oxide poisoning can present with CFS.

Cosmetics
Nearly all deodorants contain aluminium, which when applied to warm sweaty areas is readily
absorbed. Aluminium is extremely toxic and has a known association with Alzheimer’s disease.
Perfumes and smellies can be a real problem, especially with multiple chemical sensitivity.
Mercury fillings – get rid of the wretched things! Even if they are not causing your CFS now they
will cause Alzheimer’s disease later!

Garden Chemicals
Many are extremely toxic – children should not be allowed to play on treated lawns for at least 6
weeks after spraying.

Drugs
Most CFSs know that alcohol makes them feel awful. This is also true of many prescription drugs
such as beta blockers, antidepressants, cholesterol drugs (especially statins), diuretics, hypnotics etc.
If prescribed, each one should be tried with great caution. They are all capable of triggering a
relapse.
Head lice treatments contain pesticides and should not be used at all. Lice can be easily controlled
with wet combing or electric “zappers”.
The Pill and HRT are particular problems which I discuss at length below. Indeed I believe that
taking the Pill or HRT or other such hormones such as those for infertility (clomiphene and other
gonadotrophins) or other pituitary suppressing drugs (bromocriptine, danazol) are major risk factors
for CFS and partly explain why this problem is more common in women than men. Incidentally I
often see mother-daughter or mother-son CFS sufferers, but rarely father-daughter or father-son CFS
combinations. This is because mitochondria are inherited down the female line!

Outdoor Air Pollution


Many industries discharge pollutants directly into the local air, water and soil. The worst offenders
are power stations which burn toxic waste, manufacturing industry, nuclear power stations leaking
radiation and the drug and chemical industry. Busy roads create traffic fumes. Nasty chemicals are
dumped at toxic waste sites where they pollute ground water and soil. You need local knowledge to
identify these issues – further information from Friends of the Earth. Ask specifically about:
Heavy metals – arsenic, cadmium, nickel, copper, lead, aluminium etc
Radioactive waste
Pesticide residues – organochlorines and dioxins, organophosphates, pyrethroids etc
Small particulate matter (down to PMs 2.5 – don’t settle for PMs 10)
Volatile organic compounds (VOCs) - solvents, benzene compounds, formaldehydes
Polluting gasses (SOx, NOx, COx – sulphur, nitrogen and carbon compounds)

Good nutrition is highly protective against toxic stress – this is further reason to take nutritional
supplements – we all have nasty toxins on board which cause on-going damage to the body. Good
levels of antioxidants (vitamins ACE and selenium) help protect, good levels of B vitamins help
detoxify, good levels of protein, essential fatty acids and other minerals help to repair the damage.

66
A good example of this in action came out of the research into thalidomide. This drug prescribed to
women in pregnancy as a “pregnancy safe hypnotic” caused serious birth defects if the women took
it between the 38th and 42nd day of pregnancy. But not all babies were affected. This drug was tested
in rats – no offspring were abnormal. This was a mystery to researchers, until someone had the bright
idea of putting the rats onto nutritionally depleted diets. Then they started to get the foetal
abnormality of phocomelia (“flipper limbs”). It was a combination of toxic stress (the drug) and
nutritional deficiency which caused the problem to become apparent.

DON’T TAKE FEMALE SEX HORMONES: The Pill and HRT


A question that most of my female patients ask me at some stage is - what about the Pill and HRT? In the last
few years I have become increasingly unhappy about prescribing the Pill and HRT for my patients and I am
now at the stage when I actively discourage patients from using either. Essentially the Pill, especially
progesterone, suppresses the immune system. Progesterone is the pregnancy hormone (pro, in favour of,
gesterone, pregnancy). There is a very particular immune problem in pregnancy – 50% of the growing baby
genetically belongs to the father. What should happen immunologically is that the mother should reject this
baby as a foreign body. Obviously this is undesirable and to get round this the mother produces lots of sex
hormones to turn off the normal immune reaction. Women are only meant to have high levels of progesterone
in pregnancy. Pregnancy is a potentially dangerous time with greatly increased risk of blood clotting, high
blood pressure, cancer, mental disturbances, weight gain, hormone swings and immune suppression – women
largely survive because it only goes on for nine months. With the Pill and HRT there are unremitting high
levels of these hormones with all these complications. Those which most concern the CFS sufferer are the
immuune suppresssion, hormone disturbances, nutritional deficiencies (these hormones induce B vitamin
deficiencies, essential fatty acid deficiencies, raised copper and low zinc).

How to come off the Pill and HRT


One of the problems of these drugs is that for some women they are addictive and they get terrible side effects
when they try to stop them. This is compounded by the fact that the high doses in the Pill and HRT turn off the
body’s own production of sex hormones. This explains for example post Pill amenorrhoea – the pituitary gland
is “turned off” by the Pill and HRT which may take months or years to recover. Some young women go
straight into a menopause when they stop the Pill.

So these drugs have to be tailed off slowly (a combination of reducing the dose, taking alternate days, halving
the tablets or cutting patches in half) over several months. If there are bad withdrawal symptoms, I would
measure hormone levels and possibly prescribe for a short time - see Natural Hormone Replacement.

Which are the bad oestrogens and progesterones?.


The malign effects of progesterone and oestrogen are extensions of their normal biological action. So they can
all be bad depending on the dose and delivery. The normal action of hormones is kept in tight control by the
body which releases hormones in carefully balanced amounts which it adjusts from minute to minute – a far
cry from a once daily dose or even a continuous seepage from a patch or cream.. Any oestrogen or
progesterone, natural or synthetic, has the ability to cause great harm It is a question of the dose and delivery.
No hormone cream, patch or pill can exactly copy the body. All have serious problems.

Dr Ellen Grant has written most extensively on this situation and the following is a book review I did which
sums things up.

Dr Ellen Grant: The effect of exogenous sex hormones on women's health including increases in breast, endometrial,
ovarian and cervical cancer, and sexually transmitted diseases". - Recommended reading: Sexual Chemistry - Dr Ellen
Grant, Cedar, ISBN 0-7493-1363-3 - (summary prepared by Dr Sarah Myhill)
The combined oral contraceptive Pill has become widely accepted as a safe contraceptive for long-term use, and when
it is being administered, usually the only issue up for discussion is its efficacy in preventing pregnancy. Dr Grant
argues that its use causes a whole range of clinical problems. These side effects are an extension of physiological
actions and are therefore dose dependant. For the same reason, it is irrelevant whether the hormones are of natural
origin or have been artificially synthesised, are taken orally or transdermally.

Corticosteroids and anabolic steroids are rightly used with caution. The female sex hormones in the Pill and HRT are

67
related compounds with similarly profound and wide range of activity.

1. Female sex hormones stimulate target organs resulting in increases in all hormone-dependent cancers particularly
breast and cervical cancer. There is a clear link between unopposed oestrogen use and endometrial cancer.

2. They affect the immune system depending on proportions of progestogen (which tends to suppress) and oestrogen
(which tends to stimulate). Grant argues that the immuno-dysregulation caused in this way has contributed to the
increasing allergic diseases we now see.

3. They interfere with trace element metabolism, particularly lowering zinc and magnesium levels as well as
disturbing B vitamins and essential fatty acids levels. Low zinc is associated with anorexia, birth defects and dyslexia
which, argues Grant are diseases exacerbated by the Pill. Low magnesium is associated with cardiovascular disease,
the commonest cause of death in UK.

4. They cause mental disturbances - oestrogens tend to cause euphoria (and may be addictive), progestogens tend to
cause depressive symptoms. Falling levels of both hormones cause depressive symptoms - this occurs naturally in
PMT, post-natal depression and menopausal depression. Taking the Pill or HRT exacerbates these natural swings so
there is a higher incidence of depression and suicide in Pill takers. This effect may be mediated by abnormal
zinc/copper ratios.

5. They cause dilatation and/or hypertrophy of blood vessels leading to thrombosis (pulmonary embolus) and increased
vascular disorders (hypertension, coronary artery disease, stroke). Again this is a physiological effect which can be
seen in the veins and arterioles of the uterus, but is exacerbated when used in the pharmacological levels used in the
Pill and HRT.

6. The Pill is used as a first-line contraceptive in young women. This means condoms are rarely used and women are
more likely to acquire sexually transmitted diseases.

7. A combination of the immuno-dysregulation, plus hormone stimulation of the cervix, plus exposure to sexually
transmitted diseases with chronic inflammation and carcinogenicity of papilloma virus has led to an epidemic of
aggressive cervical cancer in young women.

8. Acute pelvic inflammatory disease may lead to chronic pelvic infection and infertility.

The main reason why these disorders have not become more apparent in clinical trials is because the women who
developed side effects early on in the trial stopped taking the Pill. This meant that the women who continued on the
Pill were pre-selected because they were resistant to the malign effects of the Pill so the true overall long term side-
effects of the Pill and HRT have been underestimated. This view is now receiving considerable support particularly
from the Dutch epidemiologists.

Breast Cancer
We know that breast cancers are hormone dependent cancers. A major line of treatment after excision is to remove
oestrogen and progesterone from the body - either by using the anti-oestrogen Tamoxifen, or surgical castration. Breast
cancers arising in young women carry a worse prognosis because their levels of sex hormones are higher. Breast
cancers arising during pregnancy develop rapidly, like an abscess, driven by high levels of oestrogen and progesterone.
So well established is this principle, that trials are being considered to treat women with a poor family history of breast
cancer with the anti-oestrogen Tamoxifen as a prophylactic, to reduce their risk of this disease.

A logical extension of this principle is that giving exogenous oestrogens will increase the incidence of breast cancer,
and reduce the age at which breast cancer develops. There is no doubt that breast cancer rates are rising, but is this due
to the pill and HRT? Is there a demonstrable link in the epidemiological studies? Dr Grant believes there is.

She argues that the published epidemiological studies are flawed because they do not include all the women that were
ever started on the Pill. This is crucial because the women who dropped out early did so because of side effects. In her
book "Sexual Chemistry" Dr Grant presents compelling evidence to show that these women are in the very group who
would be most likely to develop breast cancer. The same applies to cervical, uterine and ovarian cancer. The reasons
she gives are well understood by doctors who are practicing a nutritional approach to medicine. The women who get
side effects are those with an inefficient immune system (tendency to develop food intolerance) and poor nutritional
status (particularly poor levels of B vitamins, trace elements especially zinc and magnesium and essential fatty acids)
and therefore more likely to develop breast cancer in the first place.

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This problem of pre-selection has been addressed by Vandenbroucke et al. He conducted a review of the follow up
studies reported in three recent meta-analyses to determine the effect of oestrogen therapy on both total cancer and
cardiovascular disease. He used "total cancer" to look for a "healthy cohort effect". He found a 'protective' effect on
total cancer of almost 20% which led him to conclude that since "the beneficial effect of oestrogen on total cancer is
unlikely to be real because female reproductive cancers are, if anything, increased by oestrogens, and for all other
cancers no effect is known at present", therefore "the meta-analyses are based on the results of observational studies
and can be influenced by unintended selection of relatively healthy women for oestrogen therapy."

Vandenbroucke has clearly demonstrated that pre-selection has taken place and therefore such retrospective trials are
not just invalid but misleading.

Any trial must include all women who have ever been started on the Pill or HRT to be fully valid. However the
difficulty here is that by the early 1980s, over 90% of young women have been started on the Pill. This means there are
no true control subjects and so setting up such a trial is fraught.

DETOXING WITH FAR INFRA RED SAUNA (FIRS)


Recently we have seen a flurry of extremely well done medical studies which have looked at the
chemical burden in our environment and also our bodies. We are being increasingly exposed to a
whole range of new chemicals – indeed in the last fifty years it has been estimated that 5 million new
chemicals have been created by man, of which 75,000 are in regular everyday use, of which less than
10% have had any sort of toxicity testing. These chemicals are now ubiquitously present in the
environment, they are well absorbed through food, water, by inhalation and through our skins. Many
of them are very fat soluble and bio-accumulate in our bodies. It is now becoming very clear that
internal environment of our bodies reflects our external environment. Furthermore, because we are
at the top of the food chain and because we live for many years, chemical burden is increasing each
year. Studies done by the World Wildlife Fund and other such scientific bodies show that we all carry
a heavy burden of chemicals, they are present in our fat in mg/kg (this would be similar to the sort of
levels in blood if we were taking a therapeutic drug), they persist for many years and their effects are
unpredictable. Most of these chemicals are known toxins, cause cancer, birth defects, damage to
nerves and the immune system, to the liver and bone marrow, etc. Furthermore, we now know that
cocktails of chemicals have much more serious effects than chemicals in isolation. Furthermore, low
dose chemicals may be very much more toxic than we ever anticipated, partly because many of them
mimic our own hormones and thereby disrupt the delicate hormonal balance within all of us.

I am coming to the view that everyone should undergo regular detox, even people who are well. I have yet to
do a fat biopsy on any patient and find that they are completely free from chemicals. We all carry a chemical
load because of our polluted environment – we cannot avoid this, but can try to keep it as low as possible by a
combination of avoiding chemicals where possible, detoxing with good micronutrient supplements and through
sweating regimes.

In multiple chemical sensitivity (MCS), chemical reactions are often triggered by overwhelming exposures to
chemicals such as pesticides, volatile organic compounds, heavy metals, toxic gases (carbon monoxide, NOX,
SOX) etc. I now suspect that many patients with CFS and MCS not only react to chemicals outside the body,
but may also be reacting to chemicals within their own fat. If they can unload their bodies sufficiently, they can
reduce their own sensitivity and tolerate inadvertent exposures to chemicals when they stray outside their own
safe environment.

Chemicals are detoxified through the liver (and this is helped by good micronutrient status – see my nutritional
supplements section), they can also be excreted directly through the skin and by exhalation. This occurs when
the body gets hot when chemicals are literally boiled off and passed out through the sweat. The most
physiological way of doing this is exercise, but many of my patients are not well enough to exercise.

Time honoured methods of detox include saunas, Turkish baths and spa therapies and I recommend all these
treatments to my patients. However, the problem with these treatments is not only do they warm up the skin
and subcutaneous tissues, but the whole body is warmed up. This means that chemicals are mobilised from

69
the fat (which largely speaking lies underneath the skin), gets into the blood stream and causes acute
poisoning. Many of my patients are unable to tolerate these sweating therapies as a result.

So this is why I became particularly interested about a new technique described in Dr Sherry Rogers’ book
“Detoxify or Die” (available from Amazon www.amazon.co.uk). She advocates a technique called far infra
red saunas. Far infra red is the main energy source that comes from the sun and is responsible for warming
our skin when we sit in direct sunshine. The rays penetrate several centimetres through the skin and heat up
subcutaneous tissues. With enough sun on the skin the skin will sweat, chemicals from subcutaneous tissues
will be mobilised and pass out through sweat. The sunshine does this without heating up the core temperature
(although if you lie in the sun for long enough then the core temperature will eventually rise) therefore
chemicals can be mobilised and excreted without causing systemic poisoning. Indeed Dr Rogers describes
many case histories in her book of patients who, for example, have severe heart disease who would certainly
not tolerate a sauna, who can tolerate FIRS very comfortably.

Most chemicals come out in the first few minutes of saunaing so you do not have to boil yourself for hours to
get a result! Once you have a covering of sweat, this means chemicals will have been mobilized from the
subcutaneous tissues onto the skin. Then shower off at once – if you do not, the chemicals will simply be
reabsorbed. After 24 hours, chemicals then redistribute from deeper tissues into the superficial layers and the
process is repeated. This way after some weeks of saunaing, chemicals will gradually be drawn out even form
deeper layers. It is very likely that massage will help by physically mobilising chemicals stuck in fat.

The key point to remember is that sweat does not just contain the bad things, it also contains the good
minerals. This is because sweat is blood but without the protein and cellular content. So it is important to
rehydrate with my physiological mix of minerals – I suggest one gram in juice/water following a sweat.

Far infra red does not damage the skin (it is the suns ultra-violet which is at the other end of the spectrum
which does that), so have no fears on this count. Indeed primitive man evolved running naked under the
African sun and so to have far infra red playing on the skin and warming it is an entirely natural process. I
have now seen several patients who have had fat biopsies done before and after sauna detox regimes. So far
everyone has been able to substantially reduce their chemical load. So the sweating techniques are clearly
effective – one patient saw his chemical load reduce to 25% after a daily sauna for 3 weeks.

Suppliers
I trust you will appreciate that it is impossible for me to guarantee the prices quoted below and keep
them constantly updated. When contacting suppliers, please, make sure you obtain up to date prices.

One supplier of these saunas that I am aware of is High Tech Health; cost £765.11 (ex. VAT & Delivery).
High Tech Health Telephone No. 0845 2255 610; website: www.hightechhealth.net

From July 05 you can contact the UK distributor of Australian saunas (you can get information about them
from http://www.firsauna.info/). Medium size for small to average size person - £430 with express delivery 3
to 4 days or £370 with 3-4 week delivery. Large size - £433 with express delivery, economy delivery not
available). Contact details: Pam Worsey, e-mail: pamela.worsey@virgin.net
tel: 01874 611 267 any time (you can leave your details on the answerphone)
Another place to try is The Ultimate Sauna – Iain Lansdell, e-mail: iain@theultimatesauna.co.uk prices -
£750-£950.
Another supplier I have found is Free Spirit Living in the USA. Website: www.freespiritliving.com Price of the
Relax Sauna is $479. They will deliver this model to the UK – please, contact directly for a shipping quote etc.
by e-mailing Christa on christa@freespiritliving.com
A patient has advised of another UK supplier. Portable FIRS, details from www.usave.tv price:
£149.95. This seems to work fine.

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AVOID VIRAL INFECTIONS
Obviously one cannot avoid all viruses, but do your best. There tends to be a mini-epidemic of colds
at the start of every school term as every virus acquired is shared around! Don’t travel to exotic
locations and risk picking up some horrible bug. Vaccinations can certainly trigger flares of CFS –
some are probably essential and unlikely to cause a flare such as tetanus and oral polio. Most other
vaccinations have the potential to flare CFS. Flu vac is a two edged sword and there is no easy
answer to this. Both the vaccination and the illness can flare your CFS. If you are the sort of person
who always gets flu then have the vaccination. If you never get flu, don’t bother. Between the two is
a large grey area!

The best defense against viral infections is a healthy body and healthy immune system. Indeed I
believe that if you have a perfect immune system you should never get a cold. Getting a cold is a
symptom of a poorly functioning immune system.

The body reacts against viruses with inflammation and the results of inflammation is either directly
toxic to the virus, or helps to physically expel virus from the body. For example, viruses are very
temperature sensitive – for the body to run a fever is a good thing – fever kills viruses (and bacteria).
A good snotty nose helps to wash out virus from the nose and a hacking cough blasts the bugs from
the lungs. Symptoms may be uncomfortable but should be welcomed as an appropriate way to get rid
of virus. This is why I hate to see symptom-suppressing cold remedies such as paracetamol,
antihistamines, alcohol, decongestants, cough mixtures which interfere with the body’s natural
mechanisms of killing and expelling virus. SO DO NOT SUPPRESS SYMPTOMS – THEY ARE
NATURE’S WAY OF EXPELLING INFECTIONS.

The only exception to using paracetamol for fevers is in some children who tend to get fits if their
temperature goes up too high. In this event paracetamol and tepid (have you ever had a fever and
cold water splashed on you?) sponging should be used to prevent this happening. It is therefore
doubly important in these children that micronutrients are used to improve the immune response.

I am further concerned by the possible erosion of the immune system by excessive use of hygiene,
antibiotics, vaccinations and exposure to toxic chemicals such as pesticides. There is a place for
antibiotics and vaccinations but in my opinion they are greatly overused. A recent study indicated
that the rising incidence of asthma was due to over-prescribing of antibiotics in early life. Excessive
hygiene (too many baths, hand washing, use of disinfectants etc) is also associated with increased
risk of allergy.

Rest and warmth sound like common sense but are ignored by many. Rest allows the immune system
to work unhampered whilst warmth kills bugs. So much CFS is triggered by the workaholic who
continues to strive even when they are ill.

Recurrent infections are a real problem for some CFS patients who simply go from one illness to the next
without remission. Furthermore, viruses often cause a mild immuno-suppression which then opens the door
for other infections to get in – not an easy situation! Actually immune suppression I suspect is a very common
problem. The immune system is particularly susceptible to micronutrient deficiencies and toxic stress.
Clinically this manifests as susceptibility to viral infections. Indeed if the immune system was working
perfectly then an upper respiratory tract infection should cause very minor symptoms for just a day or two. We
all know of people who never catch a cold – these are the people with perfectly functioning immune systems.
This should not be confused with CFS patients who do not get the local symptoms required to blast the virus
out – ie acute rhinitis (runny nose) but just get a flare of all their CFS symptoms. In this event the immune
system is so paralysed it cannot mount a local acute response to physically flush out the virus. I am one of
those lucky people with a reasonable immune system who can get rid of a virus in 2 hours – at the first sign of
rhinitis or sore throat I take 10 grams (ie 20 capsules) of vitamn C and if the symptoms are not gone within

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one hour I take another 10 grams. So far that has not failed me!

So poor micronutrient status will result in a malfunctioning immune system. I am coming the view that
functional tests of vitamin and mineral status are more useful than looking at actual levels and I would
certainly recommend doing some nutritional tests at Biolab in London to look for levels of superoxide
dismutase (a functional test of zinc, copper and manganese), glutathione peroxidase (selenium), NAD (a test of
B3 status and mitochondrial function) and a red cell magnesium.

The second point is that some people can prevent a cold from developing by taking high doses of vitamin C to
bowel tolerance. I do – see above.

Nature’s best defence against virus is to run a temperature – there is no doubt that people who tend to run cold
all the time are more prone to picking up infections and indeed this is the basis of the age old adage to wrap up
well in cold weather or you will catch a chill. It would be interesting to measure your basal temperature. Low
temperature can be indicative of borderline hypothyroidism and this can certainly present with recurrent
infections. Children are very good at running a temperature at the first sign of virus, but adults less good. At
one stage Boots used to market a product called rhinotherm which blasted hot air into the nose – the idea is
that you inhaled this at the first sign of a cold and for some people it got rid of the virus. I know some patients
can get rid of a virus by giving themselves a temperature – i.e. using a hot bath to get themselves as hot as
possible and then wrapping up in blankets with a hot water bottle to make themselves sweat it out. I know
some athletes deliberately go running in order to induce a temperature, sweat out a virus, but I have to say this
is extremely risky and not something I would recommend as it could trigger a flare of CFS!

There is no doubt that chemicals have immuno-suppressive effects – they also depress the bone marrow and
this could explain borderline anaemia and low white cell counts. I often do fat biopsies on patients and
invariably find raised levels of pesticides or volatile organic compounds – indeed I have yet to see a normal
result – and all these chemicals cause immune suppression. Increasingly I am coming to the view that we
should all do detox regimes. First of all we should avoid chemicals as much as we possibly can, secondly take
good micronutrients to improve the liver detoxification of chemicals and thirdly sweating regimes. Obviously
the most physiological sweating regime is to take exercise, but impossible in CFS patients. I have been getting
interested in far infra red saunas and there is no doubt that these are effective in reducing chemical loads, as
demonstrated by doing fat biopsies before and after sweating regimes.

Sometimes allergy symptoms can present with symptoms of an acute cold – ie rhinitis and cough.

There are some very useful antiviral herbal preparations on the market such as colloidal silver and Echinacea,
but it is really a case of trying as many things as you can until you find a combination that suits you.

So the basic principles are:


Get your micronutrient status as good as possible
Detoxify as much as possible – including sweating regimes
Identify any allergies you may have
Correct thyroid hormone abnormalities – for this you need to test a free T4 a T3 and a TSH
Aggressively attack viruses at the first symptom with heat, high dose vitamin C or whichever herbal
preparations you find suit you
Do not symptom suppress!

There are some nutritional and botanical interventions which help the body to get rid of the virus
(and/or bacteria) more efficiently and quickly and so you feel better, sooner. They are:

• Zinc citrate 50mgs - 4 daily


• Vitamin A – adult dose is 20,000i.u. twice daily for 2 days. Vitamin A should not be given to
women who could possibly be pregnant and therefore there are no preparations of pure
vitamin A on the market. Use cod liver oil instead - one capsule contains 5,000-10,000i.u of
vitamin A. For children, reduce the dose to 10,000i.u. twice daily.

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• Infections can also be helped by propolis 600mgs three times daily (dissolve in the mouth). Fresh
propolis is cheapest from a bee keeper - it comes as a firm waxy lump - just break off a pea sized
lump and suck/chew. Echinacea 200mgs - to be taken at the first sign of a cold in small doses
every 2-3 hours for the duration of the infection. Lime blossom tea - several cups daily. Sage
works as a gargle for sore throats/tonsillitis (needs large doses e.g. 30 drops of the fluid extract
in water, three times daily), as does hydrogen peroxide (food grade 6% available from Boots)-
gargle 4 times daily. Try chamomile tea.
• One of my patients claims 1,000mcgms of selenium daily works wonders. The toxic dose is
3,000mcgms daily.
All these preparations are available from BioCare 0121 433 3727. All my patients qualify for trade
prices.

If the symptoms of a virus do not improve after 3-4 days, then it is possible that a secondary bacterial
infection has developed. A healthy body and immune system can deal with most bacterial infections,
but call for professional help for less than healthy people such as the very young, old, smokers,
diabetics, heart failures, history of chest infections, etc.

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THIRD STAGE – BUILDING ON THE FOUNDATIONS:
TACKLING SPECIFIC PROBLEMS

TAKING ADDITIONAL VITAMINS AND MINERALS


MAGNESIUM
I make no apology for discussing this problem at length. Magnesium deficiency is almost
universal in CFSs and is a major cause of symptoms. Magnesium is a real problem in patients with
fatigue syndromes – it is necessary for ATP to release its energy, it is necessary for oxidative
phosphorylation and much of resting energy goes to maintain calcium magnesium ion pumps. That is to
say low intracellular magnesium is both a cause and a symptoms of mitochondrial failure. So there is often
a clear indication to give magnesium by injection because that is the only way I can be assured of getting
levels up.

If you take a normal population of people and measure their magnesium levels, the result is not a
normal distribution – there is a “tail” of people with chronic Mg deficiency. What I do not know is if
these are the people at risk of getting CFS! For these people with what appears to be genetically low
intracellular Mgs one can only hope to keep the deficiency as mild as possible – ie some people never
correct.

Symptoms of magnesium deficiency.


Magnesium is necessary for muscles to relax – therefore deficiency tends to result in conditions
associated with:
Muscle spasm such as aching muscles, muscle twitching, restless legs and cramp.
Poor circulation (as muscles of arteries constrict) and angina
Asthma (muscles of the airways constricting)
Magnesium is necessary:
for normal nerve transmission
for energy supply to cells with deficiency causing fatigue
for detoxification in the liver, for normal immunity, blood clotting etc
and a host of other function. Indeed I cannot think of a bodily department in which magnesium is not
essential. It prevents heart disease, cancer, blood pressure, kidney stones and improves energy, sleep
etc.

Magnesium deficiency is the most difficult deficiency to correct. In evolutionary terms, magnesium
was abundant in the diet and therefore no good mechanisms to conserve magnesium evolved. It
appears to be poorly absorbed and easily excreted even by so called normal people (and I don’t think
there are many of those left!).

I can guarantee to get magnesium levels up by using injections. One injection of 2mls of 50%
magnesium sulphate (1gm MgSO4, or 100mgs elemental Mg or 4 millimols) will usually keep levels
up for two weeks (however, some people need them more often). I have to say my preference nowadays
is to use ½ ml insulin syringes and for patients to inject themselves either every day or every other day with ½
ml (25mgs elemental magnesium) according to response. These small volume injections are far better tolerated
and less inclined to leave injection lumps. Adding lignocaine often improves matters (0.05ml lignocaine with
0.5ml magnesium. I have to say it astonishes me that so small a dose of magnesium works as 25mgs is
less than 1/10th of the RDA (recommended daily allowance).

Giving yourself a magnesium injection


Use a 0.5 disposable insulin syringe. The needle is very fine and this makes for a virtually painless injection. Take off
the protective white cap over the plunger and the orange cap over the needle. The plunger is set at 0.05ml, so push this
down so there is no air in the barrel of the syringe. Firstly draw up about 0.05ml of lignocaine, then fill up the rest of

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the syringe with magnesium sulphate. This gives you about 0.55ml of clear liquid.

You can inject in several different sites. The muscle of the leg between the knee and the hip (your lap) is fine, as is the
upper outer quadrant of the buttock. Hold the syringe like a dart, rest the needle against the skin at 90˚ (right angles)
to the skin, push hard, bit harder, until suddenly the needle slides through. Go to the nub of the needle so it can go no
further. Inject slowly over say 30 seconds, then withdraw the needle.

Wait for 2 minutes for capillary bleeding to stop, then massage the area of injection firmly for at least FIVE
MINUTES to disperse the magnesium. Sometimes you can feel the “puddle” of magnesium under the skin. If you do
not disperse it properly you will get injection lumps, which makes future injections tricky! DISPOSE OF THE
SYRINGE AND NEEDLE SAFELY IN THE PROVIDED SHARPS BIN. DO NOT REUSE NEEDLES!

There are other interventions to improve magnesium levels and some work for some people. It is
impossible to predict which will work for everyone but all are worth trying.

Are you taking enough magnesium in the diet?


The recommended daily allowance is 300mgs for men, 350mgs for women. Magnesium is extremely
safe by mouth – too much simply causes diarrhoea. I have yet to see a red cell magnesium which is
too high. However, it is theoretically possible in people with kidney failure.
1. The richest source of magnesium in the diet is from chocolate (yippee, but care with the sugar!),
nuts, green vegetables, whole grains and seeds. Use a magnesium rich salt such as Solo (I can
provide). Use a bottled water rich in magnesium. Hard water also contains more magnesium than
soft water. Most processed foods are low in magnesium.
2. Can it be supplemented? Yes, of course. Too much magnesium can cause diarrhoea in which case
your magnesium levels will fall. I am cautious about using minerals in isolation, because too
much of one can induce deficiencies in others. So I start off with BioCare mineral complex EAP
3 daily (each capsule contains 90mgs of magnesium). If this does not do the trick, add in other
magnesium salts such as Epsom salts (try between ¼ and 1 teaspoon daily dissolved in a little
warm water and gulped down, followed by a nice drink – too much gives diarrhoea, but the right
amount can help with constipation), magnesium citrate, chelated magnesium, magnesium
EAP.etc.
3. Try Epsom salts (magnesium sulphate) in the bath because minerals can be absorbed through the
skin. This is the basis of spa therapies. I do not know how much to use, but I suggest a double
handful – gardening grade Epsom salts is fine.
4. Some patients respond to magnesium per rectum. If you want to try this, please read on.

Is magnesium’s absorption blocked?


1. Calcium and magnesium compete for absorption and so too much calcium in the diet will block
magnesium absorption. Our physiological requirements for calcium to magnesium is about 2:1. In
dairy products the ratio is 10:1. So, consuming a lot of dairy products will induce a magnesium
deficiency.
2. Tea contains tannin which binds up and chelates all minerals including magnesium. If tea is to be
drunk, don’t have it with food. Incidentally, tea drinking is the commonest cause of iron
deficiency anaemia in UK for this same reason.
3. Vitamin D is necessary for the body to utilise magnesium. The only serious source of vitamin D is
sunshine on the skin – if you do not get any sunshine take 2,000-4,000iu daily.

Are you a magnesium loser?


1. All diuretics will make you pee out magnesium. By this I do not just mean drugs, but also tea,
coffee and alcohol. Even some herbal teas are mildly diuretic.
2. Hyperventilation makes you pee out magnesium. This is because hyperventilation induces a
respiratory alkalosis, the body pees out bicarbonate to compensate, but each bicarbonate is
negatively charged and carries a positively charged cation with it – in this case magnesium.

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3. Heavy exercise makes you pee out and sweat out magnesium. This should not be a problem for
CFS patients but does explain why long distance runners may suddenly drop dead with heart
irregularities.
4. Magnesium is lost at times of stress. This also includes food allergy reactions and detoxification.

Can you hang on to magnesium?


1. For magnesium to be retained inside cells you need good antioxidant status. Selenium is the main
mineral antioxidant.
2. Boron is necessary for normal calcium and magnesium metabolism. I also find boron very useful
for arthritis, perhaps because of its effect on calcium and magnesium. For arthritis I use a
preparation called Silboron, which provides 20 mgs of boron a day and works well..

At present the only way I know how to ascertain whether or not magnesium levels are replete is to
measure a red cell magnesium. I can supply a kit if you can find someone to take blood. It costs £16.

Magnesium Per Rectum updated April 2002


Giving magnesium by injection is the quickest way of restoring normal blood and tissue levels of
magnesium. However, for some patients the injections, whilst giving benefit, are too painful to be
considered long term.

At a conference in Australia in 1999 I spoke to a doctor who had been trying magnesium sulphate
given PR (like a suppository) with some success. I have now tried magnesium PR with quite a few of
my patients and it has been as effective as the injections in some of them.

To try this at home, you need some Epsom salts and an enema syringe. Epsom salts are virtually pure
magnesium sulphate and are available from chemists (at Boots a 500g bag costs £1.10, 3kg bags are
also available). You can buy a syringe from the chemist and this can be re-used so long as sensible
hygienic precautions are taken between doses.

Dissolve 500g of Epsom salts in 1 litre (2 pints) of lukewarm water. This solution can be stored in
the fridge for six months, but do not forget to warm up before use.

To load the syringe, simply push some air out, dip the tip into the magnesium solution, and draw
some magnesium sulphate back into the syringe. The exact amount is not important and I am happy
for patients to experiment with smaller or larger amounts, perhaps on a daily basis, according to
response. Some patients find it easier to hold the magnesium in by starting with a very tiny amount of
the liquid and slowly increasing the dose, thus giving the back passage time to get used to the
experience! If you find that you are tolerating this well, you may want to increase the concentration
of Epsom salts in the water, i.e. dissolve an extra 1 to 2 teaspoonfuls of the salts in the same amount
of water.

Insert the tip of the enema syringe into your bottom (perhaps using some KY jelly as a lubricant).
Once the tip is in position, slowly squeeze the bulb and the contents will pass into the rectum.

If the magnesium is being absorbed, then I would expect patients to get the same response as from a
magnesium injection, but of course without the pain. It does work for a useful proportion of CFS
patients so is well worth trying if you get benefit from the magnesium injections.

However, it struck me that there is scope to try magnesium by nebuliser. A nebuliser bubbles air
through a solution and turns it into a mist which can be inhaled. The lungs have a large absorptive
surface (about the size of a tennis court) and so magnesium can easily be absorbed in this way. I have

76
now several patients who have done extremely well through magnesium by nebuliser and I would
like to try this for others. However, this route of improving magnesium levels I can only prescribe to
my patients.

77
MAGNESIUM BY NEBULISER – A POSSIBLE PAINLESS WAY OF ADMINISTRATION
updated October 04
Magnesium deficiency is extremely common in my patients with chronic fatigue syndrome and, at
present, the only way that I can guarantee to improve blood levels (at present) is by intramuscular
injections. Many of my patients respond well to this and some can keep levels up simply by taking
magnesium by mouth or per rectum. However, some patients need magnesium by injection long term
in order to be well and this is painful.
It struck me that there is scope to try magnesium by nebuliser. A nebuliser bubbles air through a
solution and turns it into a mist which can be inhaled. The lungs have a large absorptive surface
(about the size of a tennis court) and so magnesium can easily be absorbed in this way. I have now
several patients who have done extremely well through magnesium by nebuliser and I would like to
try this for others.
I set up a small trial (i.e. me and friendly patients!) by measuring magnesium levels before and after
nebulisation but the results were inconclusive - I don't think one nebulisation is enough to see a
response. But peak flows after were improved compared to before (magnesium is a good treatment
for asthma) even though none of us were asthmatic. However, I now have patients whose levels I
have checked before and after nebulisation and so far results consistently show increased levels.
I am using the same magnesium sulphate preparation for nebulisation as for injections. It is a 50%
solution, which some people find slightly irritant because it may make them sneeze or cough but after
a few breaths this settles down (I found it best just to inhale through the mouth and not the nose).
There are no theoretical or practical reasons why anyone should get problems such as wheezing
while nebulising - indeed, magnesium works well for asthma. Some patients respond clinically as well
as if they'd had an injection. In fact, a study in New Zealand of magnesium by nebuliser for the
treatment of acute asthma showed this to be a very effective treatment, over and above the effect of
standard bronchodilators. If you feel you are getting short of breath during the nebulisation, stop the
nebuliser and get in touch with me.
Initially I suggest using 1gm daily. Because magnesium sulphate is a salty solution, you may see
white crystals appearing in the nebuliser and the tubing but these can be easily washed away. They
may block the small hole through which the solution bubbles in the nebuliser, in which case rinse it
out.
How to use the nebuliser
The idea is to convert the liquid magnesium sulphate into a vapour which can be inhaled and
absorbed by the lungs. This is achieved by bubbling air through a solution of magnesium. Most of the
nebuliser is a simple pump which pumps air. Plug it in and press the green switch to start. You can
feel the air coming out of the nozzle on the left side. There is a length of plastic tubing - push one
end over this nozzle, the other end goes into the base of the nebulisation chamber. From the top of
the nebulisation chamber the mask fits on via a connecting piece.
The nebulisation chamber divides in two when the top half is unscrewed from the bottom.
Magnesium needs to go into the bottom half of the chamber - you can see there is a little plastic float
which directs the air from the pump down through the liquid magnesium. This float needs to be
positioned squarely over the air flow otherwise the nebulisation chamber won't screw back together
snugly again.
You can see when the nebuliser is working because air bubbles through the magnesium and a white
mist comes up out of the mask. Nebulisation is complete when the pool of magnesium is almost gone
and no more white mist comes out of the mask - it should take 10-15 minutes. If you can't get the

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nebuliser to work, please phone the office.
How to obtain a nebuliser
These are the arrangements I have come up with to speed up the process and to reduce the cost. You
can purchase a nebuliser direct from "intermedical" - freephone 0800 028 2194, the cost is £55.00,
plus carriage (£7.95). You simply ring them, they send you an order form and a form to fill in so they
do not charge you VAT, you return the form to them with payment of £62.95, and they will post it
directly to you. It has a two year warranty and appears to be very good value for money.
When you receive your nebuliser, phone the office to order some magnesium sulphate crystals and
instructions on how to use them (60g, £10.00). One pot should be sufficient for two months of daily
nebulisation.
If after a month's trial of nebulised magnesium you decide that it does not suit you, then I am
prepared to buy the nebuliser from you for £30.00.
If you would like to put your name on a waiting list for a second hand nebuliser, please let me know
and I shall post one when it becomes available. It will cost £40 plus posting (approx £7.00) at the
end of your month's trial. Of the 20-25 patients so far ordering a nebuliser, only two have returned
their nebuliser, suggesting this is a worthwhile intervention.

79
B12 INJECTIONS
Vitamin B12– rationale for using 5th November 2003
Over the last 22 years of treating over 3,000 patients with chronic fatigue syndrome, I have developed a
programme of treatment which I believe all patients must do as the foundation before proceeding to other
treatments. Vitamin B12 by injection I see as an integral part of this programme and it is effective for many,
regardless of the cause of their chronic fatigue syndrome.

Those patients who respond to B12 are not obviously deficient in B12, indeed blood tests usually show normal
levels. The “normal” levels of B12 have been set at those levels necessary to prevent pernicious anaemia – this
may not be the same as those levels for optimal biochemical function. B12 has a great many other functions as
well as the prevention of pernicious anaemia. However what is interesting is how B12 is beneficial in so many
patients with fatigue, regardless of the cause of their CFS, and suggests that there is a common mechanism of
chronic fatigue which B12 is effective at alleviating.

Many of the symptoms of CFS are caused by poor antioxidant status. Normal cell metabolism constantly
produces free radicals. That is to say you cannot live without producing free radicals. These are highly
reactive potentially very dangerous unstable molecules (because, for the chemists amongst you, they have an
unpaired electron). Happily the body has evolved many systems for mopping up these free radicals before they
cause too much damage. Inside mitochondria the most important are co enzyme Q 10 and manganese
dependent superoxide dismutase, outside mitochondria we have zinc copper dependent superoxide dismutase,
glutathione peroxidase, acetyl L carnitine (it does more than one job!), as well as vitamins A, C and E and lots
of other natural antioxidants found in nuts seeds and vegetables. Where there is poor antioxidant status, high
dose vitamin B12 takes over many of their functions. This is why the effect of B12 injections is often so
obvious and running out of B12 equally obvious.

General mechanism by which B12 relieves the symptoms of CFS


Professor Martin Pall has looked at the biochemical abnormalities in CFS and shown that sufferers have high
levels of nitric oxide and its oxidant product peroxynitrite. These are free radicals. These substances may be
directly responsible for many of the symptoms of CFS and are released in response to stress, whether that is
infectious stress, chemical stress or whatever. B12 is important because it is the most powerful scavenger of
nitric oxide and will therefore reduce the symptoms of CFS regardless of the cause.1, 2, 3, 4, 5, 6

Nitric oxide is known to have a detrimental effect on brain function and pain sensitivity. Levels are greatly
increased by exposure to chemicals such as organophosphates and organic solvents7. When sensitive tests of
B12 were applied (serum methylmalonic acid and homocysteine) before and after B 12 therapy, the following
symptoms were noted to be caused by subclinical B12 deficiency: parasthesia, ataxia, muscle weakness,
hallucinations, personality and mood changes, fatigue, sore tongue and diarrhoea.8

B12 in fatigue syndromes


The “foggy brain” with difficulty thinking clearly, poor short term memory and multitasking are often much
improved by B12.9, 10, 11. Mood and personality changes, so often a feature of patients with chemical poisoning,
can be improved by B12.12. The physical fatigue and well being are often both improved.

A study
Twenty eight subjects suffering from non-specific fatigue were evaluated in a double-blind crossover trial of 5
mg of hydroxocobalamin twice weekly for 2 weeks, followed by a 2-week rest period, and then a similar
treatment with a matching placebo. The placebo group in the first 2 weeks had a favourable response to the
hydroxocobalamin during the second 2 week period with respect to enhanced general well being. Subjects who
received hydroxocobalamin in the first 2-week period showed no difference between responses to the active
and placebo treatments, which suggests that the effect of vitamin B12 lasted for over 4 weeks. It is noted there
was no direct correlation between serum vitamin B12 concentrations and improvement. Whatever the
mechanism, the improvement after hydroxocobalamin may be sustained for 4 weeks after stopping the
medication. "A Pilot Study of Vitamin B12 in the Treatment of Tiredness," Ellis, F.R., and Nasser, S., British
Journal of Nutrition, 1973;30:277-283.

Practical Details

80
Vitamin B12 has no known toxicity and B12 surplus to requirement is simply passed out in the urine (which may
discolour pink). It is theoretically possible to be allergic to B12 but in the thousands of injections that I have
sanctioned this has only ever occurred after several injections and causes local itching, redness and swelling
(although the commonest cause of redness and swelling is poor injection technique). It does not seem to matter
whether hydroxocobalamin or cyanocobalamin is used. Again the most painless injections are done using
insulin syringes and giving ½ ml daily, then adjust the frequency according to response – some patients will
respond straight away, some need several doses before they see improvement. I would do at least 6 weeks of
injections before giving up.

I was interested to hear that the top chess players inject themselves daily with B12 when they are competing
because it helps their concentration and performance!

References:
(1) Pall ML. Elevated, sustained peroxynitrite level as the cause of chronic fatigue syndrome. Medical Hypotheses
2000;54:115-125. Pall ML. Elevated peroxynitrite as the cause of chronic fatigue syndrome: Other inducers and
mechanisms of symptom generation. Journal of Chronic Fatigue Syndrome 2000;7(4):45-58.

(2) Pall ML. Cobalamin used in chronic fatigue syndrome therapy is a nitric oxide scavenger. Journal of Chronic
Fatigue Syndrome, 2001;8(2):39-44.

(3) Pall ML, Satterlee JD. Elevated nitric oxide/peroxynitrite mechanism for the common etiology of multiple
chemical sensitivity, chronic fatigue syndrome and posttraumatic stress disorder. Annals of the New York Academy of
Science 2001;933:323-329.

(4) Pall ML. Common etiology of posttraumatic stress disorder, fibromyalgia, chronic fatigue syndrome and multiple
chemical sensitivity via elevated nitric oxide/peroxynitrite, Medical Hypotheses, 2001; 57:139-145.

(5) Pall ML. Levels of the nitric oxide synthase product citrulline are elevated in sera of chronic fatigue syndrome
patients. J Chronic Fatigue Syndrome 2002; 10 (3/4):37-41

(6) Pall ML. Chronic fatigue syndrome/myalgic encephalitis. Br J Gen Pract 2002;52:762. Smirnova IV, Pall ML.
Elevated levels of protein carbonyls in sera of chronic fatigue syndrome patients. Mol Cell Biochem, in press.

(7) Pall ML. NMDA sensitisation and stimulation by peroxynitrite, nitric oxide and organic solvents mechanism of
chemical sensitivity in multiple chemical sensitivity. FASEB J 2002;16:1407-1417.

(8) Neuropsychiatric disorders caused by cobalamin deficiency in the absence of anaemia or macrocytosis J
Lindenbaum et al New Engl J Med 1988; 318: 1720-1728.

(9) MacDonald Holmes J. Cerebral manifestations of vitamin B12 deficiency. Br Med J 1956; 2: 1394-1398.

(10) Ellis FR, Nasser S. A pilot study of vitamin B12 in the treatment of tiredness. Br J Nutr 1973; 30: 277-283

(11) Langdon FW. Nervous and mental manifestations of pre-pernicious anaemia. J Amer Med Assoc 1905; 45: 1635-
1638

(12) Strachan RW, Henderson JG. Psychiatric syndromes due to avitamiosis B12 with normal blood and marrow.
Ouart J Med New Series XXXIV 1965: 303-317

What to do if your GP refuses to give the B12 and magnesium injections


This is a real bore. Magnesium and B12 injections are so helpful that it is pointless progressing onto
other things without trying these first. Therefore a way must be found to get this done. Some GPs
are unwilling to prescribe the magnesium and B12 but prepared to inject them. In this event I can
supply the magnesium and B12 and the GP’s practice nurse should be able to inject.

The next possibility is that the GP refuses to have anything to do with magnesium and B12
injections. In this event either you need to find a local nurse, physio, health visitor or mid-wife or
whoever who can do the injections for you. I am very happy to write a covering letter so that I take

81
clinical responsibility, send that person instructions as to how to inject B12 and magnesium and I can
supply the wherewithal.

The third possibility is that I teach you to inject yourself. This has great advantages because the
timing of the magnesium and B12 depends on your clinical symptoms. Some people know exactly
how long the injections last and if they are going through a good phase they last longer, shorter with
a bad phase. Sometimes more benefit is got from the B12 than magnesium or vice-versa and the
injections can be adjusted accordingly. However you really need to come and see me so that I can
teach you to inject yourself, or alternatively be taught by a competent local practitioner such as a
doctor or nurse. Many of my patients do end up injecting themselves simply because this saves the
effort of travelling down to their GP’s surgery on a regular basis and risk picking up nasty infections
in the waiting room.

I am now getting fairly confident that the magnesium by nebulizer works as well as magnesium by
injection, so I would probably go for this. I have yet to try B12 by nebulizer, but I am trying some
patients on high dose oral supplements to see if I can get the same effect as injections.

VITAMIN D
Modified vitamin D-therapy with cholecalciferol and basic minerals may be a first line therapy in
chronic fatigue and ME. Dr. med Anna-Dorothea Hock.
This interesting paper from Germany is about Dr Hock’s experience of using high dose vitamin D in
conjunction with multiminerals for treating chronic fatigue syndrome. She describes the sort of
symptoms which would indicate a beneficial outcome with giving vitamin D. For example:

• Sufferers tend to be worse in winter and better in summer (because sunshine on the skin greatly
increases vitamin D levels).
• Vitamin D has dual effects on the immune system, partly stimulating, partly modulating. On the
one hand vitamin D deficiency causes immune suppression with greater risk of getting recurrent
infections, but on the other hand deficiency makes the immune system more sensitive tending to
increase the likelihood of allergies or chemical sensitivity.
• Vitamin D has a similar dual effect on nervous tissues, with on the one hand deficiencies causing
excitation, restlessness and sleep disturbance and on the other hand upsetting highly energy-
dependent functions, such as attention, concentration, understanding and memory. This is a really
interesting combination of symptoms because I see this so commonly in my CFS patients – this
odd combination of feeling restless and almost panicky but at the same time fatigued.
• Early symptoms of vitamin D deficiency include fatigue, diffuse muscle and deep bone pain,
parasthesia, muscle cramps, gait changes and difficulty in ascending a staircase and carrying
loads. Again, these are common symptoms in CFS.
• Low levels of vitamin D causes weakness of the muscles, including muscles of the heart and poor
energy supply. Sounds familiar?
• People who are regularly exposed to sunshine throughout their lives reduce their overall risk of
cancer by 250%.

Dr Hock’s treatment of chronic fatigue syndrome is very similar to my own – she also addresses all
the basic principles with attention to sleep, diet, rest and pacing, chemical clean up and replacement
of micronutrients. She routinely checks for thyroid problems, B12 deficiencies as well as other
hormone imbalances and toxic stress. But she also routinely starts all patients on high dose vitamin
D. It is her opinion that everybody living in sun deficient areas during winter months is vitamin D
deficient – indeed, in Germany rickets is called the English disease! It is not that CFS patients have
rickets, but mild subclinical vitamin D deficiency. Dr Hock uses cholecalciferol,

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Humans evolved in hot climates running naked under the sun. Black Africans run vitamin D levels of
150pmols/l or above. Normal levels in Britain are said to be 40-125pmols/l, but this almost certainly
represents an underdose. Some of my CFS patients have levels below 10! Vitamin D is made through
the action of sunshine on cholesterol under the skin. So if there is a deficiency, the body perceives
this and responds by increasing cholesterol levels so more is available when sunshine does arrive. So
the side effects of sunshine deficiency are high cholesterol, osteoporosis, chronic fatigue, and
incidentally heart disease and cancer! Sound familiar?

How to get your dose of vitamin D


The best source of vitamin D is sunshine on the skin. Although the RDA is set at 400i.u., this is far
too low and the likely correct RDA is probably between 2,000-4,000i.u. daily. It has been
calculated that to get optimum amounts of vitamin D you need one quarter of the exposure
necessary to cause redness on the hands, face and arms three times a week. If you cause redness
you are damaging the skin and risking skin cancer. One hour’s full body exposure on a Caucasian
provides 10,000i.u. of vitamin D. Darker skins need more light. In the summer this is easily possible
to achieve – vitamin D is well stored in the body and more on one day will compensate for less on
another. The problem for my CFS patients is that many do not tolerate sunshine because they get too
hot. Some have true light sensitivity and symptoms are worsened by sunlight. It may be possible to
gradually increase the area of skin exposed to sunshine and the length of time. For example, during
the 1930s people with tuberculosis were sent to Switzerland, where mountain sanatoriums were
used to great success. Patients were exposed to sunshine on special sliding beds which were used
initially just to allow sunshine on the feet, then legs, torso and finally whole body, gradually
increasing the area of skin exposed to sunshine and the length of time of exposure.

This system could be used for my CFS patients – initially just the feet could be exposed to sunshine
through an open window (glass or plastic in the way removes the essential ultraviolet rays) – then
increase time of exposure and area of skin. On a cold day, sit out in a sleeping bag with arms,
shoulders and face exposed.

You should have just enough sunshine to tan slightly, but not to burn. Vitamin C by mouth is very
protective against burning. It is burning which increases your risk of skin cancer! Studies on people
exposed to sunshine indeed show that they have an increased risk of skin cancer, but their overall risk
of cancer is reduced by 250%!

During the winter months, when there is insufficient sunshine, either use a sunbed regularly, or
arrange for a winter holiday to top up sunshine levels, or take vitamin.D. I would suggest taking
2,000 and possibly 4,000i.u. cholecalciferol daily. At this rate there is a negligible risk of high blood
calcium levels.
Cod liver oil contains 5mcgms of cholecalciferol per 500mgs of oil. So this is almost useless in correcting
vitamin D levels. Eskimos only keep their vitamin D levels up by eating huge amounts of seafood!

COMMON HORMONAL DISTURBANCES IN CFS


It is now quite clear there is a distinct hormonal disturbance in CFSs with a general suppression of

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the pituitary gland. It is the pituitary which is the “conductor of the endocrine orchestra”. If the
pituitary is malfunctioning then this has knock on effects for the thyroid gland, adrenal gland, sex
hormones and possibly the pineal (produces melatonin for normal sleep).

In practice I invariably measure thyroid hormones (TSH, T4 and T3), often prescribe melatonin,
often check adrenal function and occasionally use sex hormones. Many CFSs are substantially
improved by correcting thyroid hormones and I insist all my CFS patients get fully tested. A useful
book on the subject is The Thyroid Solution by Prof Ridha Arem ISBN 0-345-42920-6.

Underactive Thyroid Gland


The problem in CFS is caused by low levels of thyroid hormones in the blood. This can be
underactive for three reasons – either the gland itself has failed (primary thyroid failure), or the
pituitary gland which drives the thyroid gland into action is under-functioning, or there is failure to
convert inactive hormone T4 to active T3. The symptoms of these three problems are the same.

In primary thyroid failure, the blood tests show high levels of thyroid stimulating hormone (TSH)
and low levels of T4 and T3.
In pituitary failure, the blood tests show low levels of TSH, T4 and T3.
In conversion problem, TSH and T4 may be normal, but T3 is low.

There is another problem too which is that the so-called “normal range” of T4 is probably set too
low. I know this because many patients with low normal T4 often improve substantially when they
are started on thyroid supplements. Indeed Dr Skinner, who is a consultant virologist at Birmingham,
has shown how many patients with CFS have low normal levels of thyroxine (T4) and do well when
their levels are increased to average levels. The laboratory I use has a normal range of 11.5-23 pmol/l
and I am finding many levels coming back at 9-14. In these patients there is an indication for trying
T4, especially if symptoms suggest this.

Symptoms and signs of an underactive thyroid


Symptoms: weight gain, lethargy, sensitivity to cold, heat intolerance, fluid retention, mood swings
and depression, poor memory and concentration, hair loss, joint pains and morning stiffness, skin
problems and tendency to infections, headaches, vertigo and deafness, hypoglycaemia, constipation,
menstrual problems, pre-menstrual tension, digestive problems, infertility and loss of libido.
Signs: puffy face, puffy eyes, hair loss (classically the outer third of the eyebrows), cold extremeties
and dry skin, rashes, eczema and boils, enlargement of the tongue, hoarse voice, soft pulse or
bradycardia, goitre, slowed Achilles tendon reflex. Further useful information is the basal body
temperature. Use a mercury thermometer to take the temperature in the armpit over 10 minutes
immediately on wakening. Temperatures consistently below 97.8°F (36.6°C) indicates slow
metabolic rate.

Treatment of an underactive thyroid


This depends on the bloods tests and the clinical symptoms.

If the T4 is low and T3 commensurate with a low T4 - I would start with thyroxine 50mcgms
(25mcgms for a small person or child or someone very debilitated) and increase in 25mcgms
increments every month up to 100mcgms (or 75 mcgms in a small person or child or debilitated
person) at which point the blood needs retesting. The aim is to get into the middle or upper half of
the “normal” range. If I had a patient who was very small or very debilitated I might even start with
12.5mcgms.

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If the T3 is low, and T4 normal, then I would use generic thyroid, which is a physiological mix of T4
and T3. I would start with 1/2grain daily for one month, then 1/2grain twice daily for one month,
then 1 grain plus ½ grain daily for the third month at which point the blood need retesting. Take the
second dose not later than 4pm or it may interfere with sleep. Some people like to take the second
dose at lunch time to get an afternoon boost.

If the dose of thyroid was too high, then side effects would develop - hotness and sweating, fine
tremor and palpitations. In this event, stop the thyroid supplement immediately. Taking additional
thyroid will clearly make this situation worse. If in doubt, please phone in. Some of my patients do
seem to get the symptoms of over-activity despite the blood levels being normal. I do not understand
why this should happen. In this event try the tablet under the tongue in small doses and build up
slowly.
Thyroxine is only available on prescription and I am able to supply if your GP is not happy to
prescribe. Thyroxine is inexpensive, but there is a dispensing fee on each order of £5 and I supply
enough to be going on with until a further blood test is required. Once stabilised I like to check levels
once a year. Obviously, your GP needs to be informed.
If you are taking thyroid supplements at any time, it is always possible that you could become
thyrotoxic – not through any fault of the tablet but because the thyroid gland suddenly decides to. If
you suspect this because you develop symptoms of toxicosis such as hotness and sweating, anxiety,
fine tremor, palpitations and possibly sleeplessness, then stop the thyroid supplement immediately
and get your levels rechecked.
Treatment with thyroid hormones is nearly always for life.

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UNDERSTANDING THYROID DISORDERS by DR ANTHONY TOFT –
A Book Review ISBN NO. 1-898205-92-2 Website www.familydoctor@btinternet.com
December 2002
This is a very useful book to buy if you have any kind of thyroid disorder because it specifically
details the indications for treatment and exactly when to start treating, with which doses of thyroxine
and how treatment should be monitored. It is a British Medical Association publication written by a
Consultant Endocrinologist. The important aspects for management, which Toft makes very clearly
are as follows:-

1. To diagnose and monitor thyroid disease you need to check a free T4, a free T3 and a TSH
(thyroid stimulating hormone).
2. Diagnosis and monitoring is not just a biochemical decision, but also depends on how you feel.
To get the dose right needs an assessment of both the blood tests and the clinical symptoms.
3. Patients who have sub-clinical hypothyroidism should be treated sooner rather than later, partly
because 20% go on to develop overt hypothyroidism in each following year and partly because
Toft states that one should “nip things in the bud” by prescribing thyroxine sooner on the
grounds that preventive medicine is better than cure.
4. Toft states that T3 may have to be used if the sense of well being is not achieved.
5. The correct dose of thyroxine is achieved when the T4 gets to the upper part of the normal range
and the TSH to the lower part of the normal range. A typical result would be a Free T4 of 24
and a TSH of 0.2, but Toft points out that in some patients a sense of well being is only achieved
when a Free T4 is raised for example to 30 pml/L and the TSH is low or undetectable. In these
circumstances it is essential that the T3 level in the blood is normal in order to avoid
hyperthyroidism.

I am particularly interested in Toft’s point that he sometimes increases the dose of T4 over and above
the normal range in order that patients can feel better – certainly I find that the last 25µg dose often
makes the world of difference to many patients. If however trying thyroid hormones does not help
then one should reduce the dose down.

People are often concerned about taking “hormones for life”. The point about thyroid hormones,
which is true for any substance required by the body, is that one can have too much or too little. For
all essential substances from water to sunshine this applies. With thyroid one also needs a correct
amount and this is achieved by measuring blood levels, correcting with supplements and rechecking
with blood tests. Doing it this way is therefore free from any long term unpleasant side effects.

Underactive Adrenal Gland (DHEA and cortisol) October 2003


It is clear that patients with CFS have poor output of hormones from many of their endocrine glands.
Professor Behan has shown abnormal output from the pituitary gland. This is the master gland which
controls the output from all others. So it is hardly surprising to find abnormalities in other areas.

For example, many patients have low levels of thyroxine and correction often brings great benefits.
Furthermore, the sleep disturbance in CFS is often associated with low melatonin levels. This is a
hormone made by the pineal gland. Sleep may well be improved by giving melatonin at night.
The adrenal gland is responsible for the body’s hormonal response to stress. It produces adrenaline,
which stimulates the instant stress hormone response (fight or flight reaction). It also produces
cortisol and DHEA, which create the short and long term stress hormone responses. Cortisol
suppresses the immune system, breaks down tissues and has a generally catabolic effect. However,
these effects are balanced out by DHEA, which has the opposite effect – activating the immune
system and building up tissues.

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DHEA has only recently been looked at because it was not realised that it had any important actions.
Cholesterol

pregnenolone → progesterone → cortisol
↓ ↓
DHEA → androstenedione → testosterone

↓ ↓
Oestrone → Oestrodiol

DHEA is an anabolic steroid – that is to say it builds up tissues, in contrast to cortisol, which is
catabolic and breaks down tissues. Both are essential for life in the right amounts – too little causes
problems, as does too much.
In order to ensure the right amounts of both hormones, they must be measured. This can be done
with the adrenal stress index (ASI) test. By measuring and supplementing within the physiological
range, with biologically identical hormones, one is not going to get any unpleasant side effects i.e. we
are trying to copy Nature.
The ASI test looks at cortisol and DHEA levels over 24 hours. This test is available through NP Tech
(I can send you a kit, cost £70) and entails taking salivary samples through the day (yippee, no
needles!). Indeed, salivary sampling is felt to be the most accurate way of assessing steroid hormone
levels. DHEA is available over the counter in the USA, where the FDA has classified it as a food
supplement up to a daily dose of 25mgs. It is available from www.pharmwest.co.uk. Cancer patients
have been given up to 3,500mgs a day for 2½ years, apparently with no side effects. By comparison,
a normal person produces 20-30mgs a day of cortisone, side effects appear after a few weeks of
100mgs a day or a few months at 50mgs a day.
I have been starting my patients on 25mg DHEA a day. I like to recheck a single DHEA after 3
months to make sure I am staying within physiological ranges and because a few patients need 50mg.
A typical abnormal ASI Test Result - cortisol

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Interpretation Of The Adrenal Stress Index Test for DHEA and Cortisol Levels
DHEA is easy. Low levels mean a deficiency and DHEA supplementation is indicated.
Cortisol is more awkward. Levels vary according to the level of stress and for how long that stress
has been applied. Increasing cortisol production is the normal response to stress and is highly
desirable, so long as the stress is removed and the adrenal glands can recover. On-going, unremitting
stress means the adrenal gland and the whole body is in a constant state of alert, does not get time to
recover and eventually packs up. So, there are several stages of adrenal function gradually leading to
failure:
1. Normal levels of cortisol and DHEA. Normal result. Normal adrenal gland
2. Raised cortisol, normal DHEA. This indicates a normal short term response to stress. So long as
the stress is removed, the adrenal gland will recover completely. The adrenal gland is functioning
normally but the patient is acutely stressed.
3. High levels of cortisol, low levels of DHEA. The body cannot make enough DHEA to balance
cortisol. This is the first sign of adrenal exhaustion. This is a normal response to chronic stress.
However the patient needs a long break from whatever that chronic stress may be – insomnia,
mental, physical or emotional overload, poor diet or whatever. Failure to correct leads to
exhaustion. DHEA can be supplemented to make the patient feel better, but it must be part of a
package of recovery without which worsening can be expected.
4. Cortisol levels low, DHEA levels low. The gland is so exhausted it can’t make cortisol or DHEA.
By this time patients are usually severely fatigued. Very low levels indicate Addison’s disease –
complete adrenal failure. Untreated Addison’s disease inevitably results in death.
5. Cortisol levels low, DHEA borderline or normal. This probably represents the gland beginning to
recover after a long rest. DHEA may be used to help patients feel better whilst they continue
their programme of rest and rehabilitation.

DHEA and cortisol (continued)


In practice, the interpretation is often not so straightforward because cortisol levels fluctuate through
the day in response to the stresses of daily life, peaking in the morning and falling as the day
progresses.

I do sometimes see patients with low cortisol levels who do not have overt Addison’s disease. Some
do respond to cortisol, but I would use sub-physiological doses – ie. up to, but not more than 15mgs
a day. (Please note that the usual steroid used in medicine is prednisolone. 5mgs of prednisolone is
equivalent to 20mgs of hydrocortisone). Both these are prescription only drugs.

I am aware that DHEA is still in the experimental stage. I do believe it is safe in physiological doses.
However, I need to learn much more.
After 3 – 6 months if the patient wishes to continue taking DHEA then levels need to be re-checked,
the cost of this test is £13.00.

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A New Hydrocortisone Trial
Another randomised, controlled, crossover trial of low-dose hydrocortisone treatment for CFS has recently been
published. 32 participants, fulfilling both the Oxford and CDC 1994 criteria, completed this short-term trial.
Participants received 5mg or 10mg of hydrocortisone for 28 days and placebo for 28 days.

The results revealed modest, statistically significant improvements in fatigue with this low-dose hydrocortisone
treatment compared with placebo. The degree of disability was also reduced with hydrocortisone treatment but not
with placebo. There was no significant difference in changes in fatigue score when 5mg and 10mg doses were
compared. The authors suggest that, in view of the lack of dose response in this study, 5mg is a sufficient low dose of
hydrocortisone.

Participants who responded to this hydrocortisone treatment did not differ from ‘non-responders’ in terms of their pre-
treatment cortisol levels. Although none of the participants in this study had a current psychiatric illness, those who
responded to hydrocortisone treatment had fewer psychiatric symptoms prior to treatment.

Based on the results of the insulin stress test, this short-term, low dose hydrocortisone treatment was not found to
cause significant suppression of adrenal gland function. None of the participants dropped out of the study and only
minor side effects were reported.

The authors conclude that this low-dose hydrocortisone treatment resulted in “significant reduction in self-rated
fatigue and disability in patients with chronic fatigue syndrome”.

Comment
This study sheds interesting light on the possible role of low cortisol levels in the disease processes involved in CFS.
Caution is required, however, in interpreting the results. Participants’ baseline cortisol levels could not predict their
response to hydrocortisone treatment and participants appeared to have baseline cortisol levels within the normal
reference range.

In another randomised controlled trial of hydrocortisone therapy ( see Interaction 29, page 21 for a review), McKenzie
at al., used a higher ‘low-dose’ hydrocortisone treatment of 25 - 35mg daily. They found that this dose was associated
with some improvements in symptoms but caused significant adrenal suppression. Neither of these research teams
currently recommended the use of hydrocortone as a treatment for CFS. The present study assessed the effects of
hydrocortisone treatment in the short-term only. As the authors point out, further studies, involving longer durations of
treatment and follow-up are required to assess the long-term effectiveness and safety of this treatment.

Reference: Cleare et al; The Lancet, 1999, Vol. 353 February 6, p455-458

HUMAN GROWTH HORMONE (hGH) May 2005


For some time I have been aware of the work of Dr. Teitelbaum, who is an American doctor treating Chronic
Fatigue Syndrome. We have not communicated directly, but his treatment of CFS is very similar to mine with
respect to diet, supplements, sleep, pacing, sunshine, detoxing, hormones etc. However, I am aware that he has
started to use human growth hormone and claims good results. The problem with hGH is that it is very
expensive, has to be given by injections and ideally several injections throughout the day to mimic endogenous
production. Practically speaking, therefore, it is very difficult to use hGH in this country.
HGH is the most abundant hormone produced by the pituitary gland and is the most important anti-ageing
hormone. Levels are at their highest during teenage years, when there is a marked peak, then they drop to
about a third of this level during one’s twenties and slowly decline thereon with time. hGH is converted in the
liver to insulin-like growth factor 1 (IGF-1) known as somatomedin and this promotes glucose transfer through
cell membranes as a source of fuel for cells. Declining levels of the growth hormone are thought to be
responsible for many of the symptoms of ageing such as wrinkles, grey hair, decreased energy, increased body
fat, cardio-vascular disease, osteoporosis and so on. Metabolic effects of growth hormone deficiency include
less muscle and more fat, poor muscle strength and stamina, osteoporosis, hypoglycaemia, slow metabolic
rate, poor conversion of T4 to T3, thin skin, poor heart function, poor kidney function, reduced sweating,
depression and foggy brain. Obviously, many of these symptoms occur in chronic fatigue syndrome.

There are some lifestyle changes which have been well recognised to improve production of hGH. The first of
these is sleep. Most secretion of hGH occurs during the hours of sleep before midnight. This may explain the

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old wives’ tale that one hour of sleep before midnight is worth two hours after. It would explain to me why
many of my CFS patients are owls rather than larks.
The second factor which affects hGH production is diet. Insulin blocks hGH production, so anything that can
be done to keep insulin levels low will be very helpful. Again, this may explain why the low carbohydrate, high
protein, high fat diet benefits so many of my CFS sufferers. Further points about diet are that the total amount
of food eaten is critical. Broadly speaking, people eating restricted diets live longer than people eating food ad
lib. This has also been well proven in studies on rats. What this means in practical reality is that we should
be eating small amounts of the best quality food of low GI index that we can find. The third aspect of eating is
that food after 6pm inhibits hGH production so perhaps the Chinese proverb you should breakfast like an
emperor, lunch like a king and supper like a pauper has a scientific founding! So breakfast should be a protein
and fat meal such as bacon and eggs, lunch should be protein and vegetables or salad, i.e. meat, fish, eggs,
green vegetables, salad and salad dressing, nuts and seeds should be one’s main snack and the evening meal
should be a light carbohydrate meal with vegetables, salad, root vegetables, pulses, fruit and so on.
Micronutrients are essential in the production of hGH. Deficiencies of calcium, magnesium, potassium, zinc,
chromium and vanadium can all inhibit production of hGH. Obviously, these minerals are all present in
adequate amounts in MMMs.
Finally, exercise stimulates production of hGH, but this has to be done with great care in CFS because this is
what makes sufferers ill. However, the ideal time to exercise is first thing in the morning on rising when one
should do whatever is possible without causing muscle weakness or delayed fatigue. Interestingly the best
exercise for optimal hGH production is weight training. Once a week one should go to one’s maximal lift
capacity – the maximum amount of weight that can be lifted once on one occasion to optimise results. Again,
this must be done with great care in CFS.
Human Growth Hormone cannot be taken by mouth simply because it gets digested. However, some clever
pharmacologists have been doing work with chaperone molecule – this means hGH is wrapped up in a larger
molecule which allows it to pass into the body via the gut. The product has been patented and is on the market
called Symbiotropin. It is not cheap, so shop around – I could find a product which cost about $70 for a
month’s treatment. I have absolutely no experience of using it, but if anybody would like to be a guinea pig,
please, let me know how you get on.

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GUT DYSBIOSIS – parasite, bacterial and fungal overgrowths
Fungal overgrowth is generally known as "candida" – but any yeast can ferment, and the problem
may be bacterial fermentation or parasite infection. Since there is little hard scientific evidence that
candida is the cause of this problem, the name has been changed to “fungal type dysbiosis” or
“bacterial type dysbiosis”, whichever is relevant. The joy of gut fermentation as far as doctors are
concerned is that we have tests for it. Having said that, the tests are not totally reliable and have to
be interpreted in the light of clinical symptoms.
Testing for Gut Dysbiosis
The gut is not sterile but full of bacteria, especially the colon. The stomach is supposed to be sterile
and it is kept this way by dint of producing acid. However, some acid resistant bacteria can survive
there, namely helicobacter pylori, which can cause ulcers. Eradication of H pylori can cure ulcer
disease.
The duodenum, jejunum and small intestine is supposed to be sterile, but it is believed that the
jejunum is where yeasts may flourish to cause fungal dysbiosis. The upper gut is also where parasites
may lurk. Conversely, the lower bowel, large intestine or colon, is full of bacteria which have many
beneficial functions. Taking antibiotics upsets this natural balance and can cause serious “super-
infection” with other pathogenic bacteria (pseudomembranous colitis). However, often the changes
are subtle and go unnoticed except for the development of an “irritable bowel syndrome”. This is the
bacterial dysbiosis problem.
In an ideal world, it would be possible to take specimens from all parts of the gut and do precise
counts of micro-organisms. In practice this is not possible.
The next best thing, however, to find which organisms are present is by measuring their particular
products of metabolism or to do a comprehensive digestive stool analysis (CDSA), which does
bacterial and yeast cultures in stool samples. Either you can do a gut fermentation test (£56) or
CDSA (£140, £190 including parasites). Both tests available from the website.
Test for Gut Fermentation Products. Cost £56.00
You should fast for 3 hours before taking the glucose – you need to swallow the two glucose
capsules with a glass of water in which you have dissolved the glucose powder. The most convenient
time for most patients to do this test is first thing in the morning before breakfast. The blood should
be taken one hour after the glucose load (you have to make arrangements with your doctor/nurse in
advance if using their services for blood taking). The blood is put into a fluoride oxalate bottle
(provided) and sent off to Biolab. The following measurements are made:
Ethyl alcohol if any at all, suggests yeast overgrowth of the gut
Acetate if raised, suggests bacterial fermentation due to
Propionate excess carbohydrate reaching the colon
Butyrate
2,3-Butylene Glycol if raised, suggests bacterial fermentation due to excess fibre
Succinate reaching the colon
Butanol

Low levels of the short chain fatty acids can suggest too few of the good bugs and therefore a
tendency to low blood sugar.

Excess carbohydrate or fibre reaching the colon suggests either intestinal hurry or failure to break
down carbohydrates due to inadequate enzyme production by the pancreas. An example of this in
practice is having baked beans for supper. Beans are poorly digested, get to the large bowel where
they are fermented by grateful bacteria generating large amounts of wind!

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This test will not diagnose parasite problems.
Management of Fungal Type Dysbiosis
Different people get better at different levels. Some people can substantially improve their symptoms
simply by avoiding all sugars. Some have to do this diet, and take probiotics. Some need to avoid
yeast. Some have to avoid sugar and yeast and take herbal antifungals and probiotics. And so on. I
have one poor lady who has to take a combination of three systemic antifungals and eat a
carbohydrate free diet in order to relieve her symptoms.
1. Correct nutritional imbalances which are likely to be present (see nutritional supplements
section). Attention to diet - yeasts survive best on simple sugars. Thus the carbohydrate content
of the diet should be low in these sugars (with emphasis on complex, unprocessed
carbohydrates). Some patients are allergic to yeasts, in which case these should also be avoided.
2. Take high dose DIY probiotics –see below.
3. Consider a herbal antifungal - see antifungals from BioCare. There is no one antifungal which is
better than others – at present it is simply a case of which antifungal your brand of yeast is
sensitive to (guess and see what happens when you take it). This is where the CDSA scores –
yeasts can be grown from a stool specimen and the result includes sensitivity to herbal and drug
antifungals. My experience from tests already done is that most yeasts are sensitive to Sporanox,
Nizoral and Diflucan, some are sensitive to nystatin and amphotericin and a few to herbal
preparations. Combinations are likely to work better than antifungals in isolation. Some people
have to change their antifungal regularly as new resistant strains emerge.
4. Some people will need a drug antifungal, such as nystatin, which is only available on prescription.
5. A few people need systematic antifungals such as ketoconazole (Nizoral - monitor Liver Function
Tests monthly), itraconazole (Sporanox – beware as it is teratogenic) or fluconazole (Diflucan).
NONE OF THESE DRUGS CAN BE USED IN PREGNANCY. Lamisil is licensed for skin
fungal infections but in some people is also effective against candida.
6. Avoid antibiotics, which destroy the "friendly" organisms. If you have to take antibiotics for
whatever reason, you must have antifungal cover such as Sporanox and take them with lots of
DIY probiotics.

The Diet for Fungal Type Gut Dysbiosis (Anti-Candida Diet)


This requires a low glycaemic index diet - no sugar in any shape or form including fruit and milk
sugar (lactose). It also means low carbohydrate (because these are digested into sugars which can
then be fermented) such as finely divided flours (e.g. white flour, white rice, cornflakes, most
breakfast cereals, custard powder, malted drinks) and crisps. Any carbohydrates should be the slowly
digested foods such as nuts, seeds and green vegetables, care with root vegetables. If you get worse
on this diet it may be because you have a bacterial type dysbiosis or a hidden food allergy.
Duration Of Treatment
Practical experience suggests that treatment has to be long term. The most important therapeutic
interventions are diet and DIY probiotics. Physicians are used to treating infections with short
courses of antimicrobials but if the same principles are applied to positive fermenters, poor results
should be expected. Antifungals, if used, are usually given for not less than six months and often up
to eighteen months or longer, until a good diet has been established. However often patients need an
extra course if they have lapsed on the diet.
Herbal Antifungals
The antifungals that I use most frequently are:
Mycopril. This is a fatty acid derived from coconut and comes in 250mg, 400mgs and 680mg capsules.
Start with the 400mgs one daily and build up to one capsule three times daily. If tolerated go to 680mgs

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three times daily..
Biocidin (75mgs) and Biocidin Forte (150mgs). This is a grapefruit seed extract, not absorbed
systemically, anti-fungal (broad range), antibacterial (broad range including campylobacter jejuni and
helicobacter pylori). Biocidin also kills the "good" bugs such as lactobacillus acidophillus and therefore
pro-biotics (Bio-acidophillus or Replete) should be taken after a course.
Eradicin Forte - contains artemesia annua 300mgs, biocidin 75mgs, berberis 100mgs. Artemesia (a
chinese herb) is recommended by the WHO for the treatment of chloroquine resisitant malaria. It is
effective against giardia, amoebiasis and blastocystis hominis. Berberis (used by the Chinese for 3,000
years) is active against many bacteria, fungi, protozoa, blastocystis, worms and viruses. This may have
some systemic activity.
Garlicin – 400mgs freeze dried, low odour garlic - use with above preparations to enhance their effect.
Absorbed systemically.
Oregano complex (used to be called candicidin) - a new preparation, broad spectrum, systemic effects.
Contains oils of oregano, clove, artemesia, ginger, borage seed and lauric acid. Not to be used in
pregnancy. The usual dose is one capsule twice daily.
Candistatin - Pau D'Arco, garlic, berberis, hydrastis canadensis, silymarin plus some enzymes.
Caprycillin - caprylic acid encourages growth of "good" bugs. Not systemic.
Fructo-oligosaccharides (FOS). This is a natural food which tastes sweet (like candy floss) but is not a
sugar that yeasts can ferment. This is a soluble fibre, is not absorbed but pass into the large bowel where
the "good" bugs ferment them. FOS is mildly laxative, initially causes wind, feeds up the "good" bugs and
thereby displaces the "bad" bugs. It can be used to sweeten foods for patients on an "anti-candida" diet.

Management of Bacterial Type Gut Dysbiosis


The only way I know to treat this is to empty the gut with a strong laxative, sterilise the gut
completely with neomycin (a gut-only antibiotic used prior to bowel surgery), the recolonise the gut
with the good bugs (see DIY probiotics). In this practice I am following the work of Dr Butch
Shrader who has treated thousands of patients in this way with excellent results.

Bacterial Type Gut Dysbiosis: Eradication of gut flora and recolonisation with probiotics
Sometimes I have patients with intractable gut problems which do not respond to the usual
elimination dieting and antifungal regimes, or a gut fermentation test suggests bacterial fermentation,
or CDSA shows bacterial overgrowth. There was an interesting editorial in the Journal of Nutritional
and Environmental Medicine by Dr Shrader which addressed this problem. He used unabsorbable
antibiotics (vancomycin and gentamycin) by mouth in his patients to sterilise the gut, followed by
recolonisation with probiotics. He has treated thousands of patients in this way and claims excellent
results.

Because vancomycin and gentamycin are expensive, I decided to try neomycin which is also
unabsorbable and in regular use in the UK prior to bowel surgery for sterilising the gut. To make it
more effective I thought it would be reasonable to empty the gut completely using Picolax. In order
to avoid secondary yeast overgrowth, antifungals are required. Therefore the regime I designed is as
follows:

Day One: - no food on this day


8am Take a dose of Picolax (one sachet) and one gram (2 tabs) of neomycin.
Take Sporanox one capsule
At 9 o clock, 10 o clock and 11 o clock take one gram (2 tablets) of neomycin
If by 4pm the Picolax has not worked, take a second sachet
At 4pm one gram neomycin (2 tabs).
8pm one gram neomycin (2 tabs) and one capsule Sporanox
12pm one gram neomycin (2 tabs).

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The picolax causes diarrhoea which can be severe, so make sure you have a peaceful day at home.
Any diarrhoea causes dehydration, so make sure you drink plenty. In order to prevent excessive loss
of salts and hypoglycaemia, I recommend putting a half teaspoonful of salt (ideally SOLO salt – a
sodium reduced salt, but for one day ordinary table salt will do) in a pint of water and one
teaspoonful of glucose or fructose (fruit sugar). This is rapidly absorbed on an empty stomach and
does not “feed” the wrong bugs.

Day two: light diet (i.e. your safe diet)


8am one gram neomycin (2 tabs) and one capsule of Sporanox
12am one gram neomycin (2 tabs).
4pm one gram neomycin (2 tabs).
8pm one gram neomycin (2 tabs) and one final capsule of Sporanox
12pm final dose of neomycin 2 tabs.
Day Three: your normal diet
Start Replete. The normal dose is one sachet a day but some people get diarrhoea with this.
Therefore I suggest using ½ a sachet initially spread over the day and if this is tolerated increase to
one sachet a day. Once this is all taken switch over to Bio-acidophillus (the same as Replete but a
lesser dose) one capsule twice daily – buy a pot of 60 and use it all up.

One of my patients who tried this did not get an immediate result but gradually improved over the
next three weeks – I suspect because it took this length of time for the inflammation in the bowel to
settle down.

Problems with Moulds August 2004


I am increasingly finding that patients who are not responding to my standard work up are suffering
from mould sensitivity. This is not an easy diagnosis to make because tests for mould allergy are
notoriously unreliable. They do not give immediate skin test reactions, furthermore it is uncertain
whether symptoms are due to allergy to moulds or to sensitivity to mould fumes. This is a little bit
like yeast overgrowth in the gut – for some people this causes a problem because they are allergic to
yeast and some because they react to the products of fermentation (mycotoxins).

The key to diagnosing mould allergy is the history and if patients are improved in a mould free or low mould
environment then this is highly suggestive that moulds are a problem. In order to survive moulds have to get
their water from air, therefore they do not exist either in very dry climates (which may be hot dry or cold dry),
above three thousand feet where the air is too thin to hold sufficient moisture, or on sea fronts where the
prevailing winds are onshore and since moulds do not live in oceans their spores are constantly blown in land.

Therefore, to diagnose mould allergy I currently recommend that people have a two week holiday in such an
environment. They may have already done this and not realised that their improvement was actually due to
mould allergy and ascribe improvement to other factors such as freedom from stress, or sunshine, or whatever.

Being free from moulds in our temperate climate is extremely difficult. To reduce mould counts in houses one
has to take away obvious sources, such as house plants, a cellar, and cure any damp problem. The next step is
to reduce the humidity inside the house to less than 40% using a dehumidifier and this will kill any moulds
living in the house. Reducing the humidity is helped by trying to avoid moisture creating activities such as
houseplants, drying clothes, boiling pan, etc. Once the atmosphere is dried up an air filtration system helps to
get rid of the moulds in the air.

Getting the relative humidity below 40% is critically important and one can now buy a little gadget from ETI
Ltd on 01903 202151 or e-mail: sales@etiltd.co.uk (quote order code 810-155) – this costs £16 + vat + £3
p+p and will tell you if you have got the humidity down to an acceptable level.

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Another possibility is to use an air filtration system which gets rid of mould spores such as the Healthy House
Enviro-air filter.

In the early stages of mould allergy one often gets local symptoms such as rhinitis, conjunctivitis and sore
throat, but as the symptoms become more systemic they can present with foggy brain and chronic fatigue.
Patients who come to see me usually present with the latter symptoms.

HYPERVENTILATION – DO NOT JUMP THIS SECTION! IT IS LIKELY TO APPLY!


Updated March 2006
Since 2004, thanks to the biochemical endeavours of John McLaren Howard, we have started to
make real progress into what is going wrong at the cellular level in sufferers of chronic fatigue
syndrome. We have demonstrated a clear relationship between mitochondrial function and levels of
disability. This means we have established the fundamental cause of what is going wrong in CFS,
where the biochemical lesion is and what has to be addressed to correct matters.

There are some things which seem to be easily correctable. For example, poor levels of ATP are improved
by giving D-ribose and this seems to work reliably well and parallels clinical improvement.

However, some aspects require a great deal more research. One of these is translocator protein function.
One TL protein is necessary to move ADP into mitochondria and another TL protein moves ATP out of
mitochondria. These two proteins often malfunction in CFS and are major cause of mitochondrial failure.
We know of at least two ways in which TL proteins can be blocked. One is toxic stress (heavy metals,
volatile organic compounds or pesticides), but another is pH (acidity) changes. Indeed, John McLaren
Howard takes advantage of changes in pH to block TL proteins and thereby tests their functions when he
is doing his mitochondrial function tests.

There are several ways in which pH changes could occur in the CFS sufferer and these could affect
translocator protein function. One of these is hyperventilation.

All CFS Sufferers Hyperventilate


Well – perhaps a slight exaggeration! But let me explain. I have never understood why humans evolved
such an inefficient system of breathing. We inhale most of our recently exhaled air, which to me seemed a
nonsense – it would be much more efficient to have a one way flow of air over a surface, like fish do with
water over gills. However, there is a good reason. Life evolved over millions of years in an atmosphere
rich in carbon dioxide – the waste gas of respiration. Eventually carbon dioxide became essential for
normal cell metabolism because cells used carbon dioxide to maintain their optimal pH (acidity). When
levels of carbon dioxide in the atmosphere fell, cells had to develop a mechanism for artificially bathing
themselves in the right level of carbon dioxide for their efficient metabolism. And so lungs evolved.

Lungs are necessary to keep carbon dioxide levels high in inhaled air and therefore in the blood. The blood
is very efficient at gathering oxygen and all arterial blood is 100% saturated with oxygen. But here comes
the crunch! Oxygen is only readily released from red blood cells to supply oxygen to the tissues in the
presence of high levels of carbon dioxide. We tend to think of oxygen as the “goodie” which we have to
encourage and carbon dioxide as the “baddie” which we must do our best to get rid of. Actually, it is the
other way round! Our system is designed to hang onto carbon dioxide! Without carbon dioxide we cannot

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release oxygen from haemoglobin so it can get to the tissues and mitochondria, where it is needed to burn
fuel to release energy. So what does this mean in practice?

Many people are subject to chronic stress and this results in the release of stress hormones, particularly
adrenalin and noradrenalin. These stress hormones are stimulants – and this includes the respiratory
centre. This results in increased respiratory drive and so we breathe more than is desirable. However,
blood cannot become more than 100% saturated with oxygen. All that happens is that more carbon dioxide
is washed out of the blood. This makes oxygen cling more fiercely to haemoglobin in red blood cells and
therefore oxygen delivery to the tissues is made worse! Paradoxically, to improve oxygen supply to the
tissues you have to breathe less! Breathing less increases carbon dioxide levels and improves oxygen
delivery to tissues.

Lowering carbon dioxide levels in the blood has other dire effects. It upsets the acidity of the blood and
causes what is known in medical jargon as a ”respiratory alkalosis”. That is to say, the pH outside cells is
raised (more alkaline) and the pH inside cells is lowered (becomes acid). The trouble is that a small
change in acidity inside cells blocks TL protein. Just a few deep breaths is all that is needed to
substantially change the pH inside cells. Theoretically one could go through the day switching your TL
proteins on and off depending on your breathing.

So why does having CFS lead to a tendency to hyperventilate?


Again, taking the evolutionary approach, humans used to live a far more active existence. Because we are
now so sedentary, most of the time we do not need the oxygen supply our lungs have evolved to deliver.
We do not produce enough of the waste gas carbon dioxide either because we do not exercise enough. The
system is under-used and so there is an in-built tendency to breathe too much. This is greatly exacerbated
by having CFS because exercise is not possible. Furthermore, having CFS is extremely stressful. All
sufferers want to do is to get on with their lives and are deeply frustrated by their inability to do so. This
causes stress hormones to be released (adrenalin and noradrenalin) which have a stimulant effect –
including stimulating the respiratory centre. These hormones are the normal fight or flight hormones and
in the primitive man setting, their release would herald intense physical activity – so to stimulate the
respiratory centre in this situation is desirable. However, to stimulate the respiratory centre and not follow
this with physical activity is disaster because it simply triggers hyperventilation.

This effect is worsened by stimulants such as excitement (sitting in front of an exciting film, but not using
any oxygen up, computer games), caffeine, and so on. We can all enjoy an adrenalin buzz, but too much
switches on hyperventilation.

It is interesting to speculate about the relationship between asthma and hyperventilation and fatigue. In
my experience it is unusual to see fatigue and asthma in the same patient at the same time, except in
severe CFS, although with CFS patients there is sometimes a past history of asthma. Perhaps the local
reaction to hyperventilation is asthma (by constricting the airways to reduce gaseous exchange) and the
systemic reaction is fatigue (through reducing blood supply, to try to increase carbon dioxide retention
in the blood in an attempt to improve local oxygen delivery). Perhaps treatment of asthma by using
bronchodilaters (blue inhalers), whilst relieving the local airways obstruction and wheeze, actually then
allows the systemic symptoms to become a problem?

It may be that asthma, blocked nose and sinus symptoms are ways in which the body tries to prevent
hyperventilation. The airways constrict to try to reduce gaseous exchange to allow carbon dioxide to be
retained. Breathing harder, or deep breathing makes asthma worse. Inhalers to open up the airway, whilst
relieving the airway constriction in the short term, in the long term worsen hyperventilation and therefore
the cause of asthma.

Tests for Hyperventilation


The problem with symptom lists is that there is so much overlap between symptoms due to other
problems such as allergies, toxic stress, gut dysbiosis etc. My experience is that the following are good

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pointers to a possible problem with hyperventilation.

Most sufferers deny or do not accept they have a problem. This is because hyperventilation is associated
with psychological symptoms and most people (correctly) do not accept this is the cause of their CFS.
Everybody thinks that their breathing is fine!
Poor translocator protein function (on mitochondrial function test) with no obvious or demonstrable toxic
stress.
Normal mitochondrial function on testing, or a mitochondrial function score which is better than the level
of disability
Intracellular acidosis (this can be tested for by John McLaren Howard) – but since pH of the blood varies
greatly through the day depending on breathing patterns, this may not be reliable.
Alkaline urine (the respiratory alkalosis is compensated for by peeing out bicarbonate and incidentally,
magnesium with it. Ask for litmus paper from me as this may give a clue – if the paper goes blue you are
peeing bicarbonate out). Again, this may not be reliable since sufferers tend to switch in and out of
hyperventilation.
If symptoms fluctuate through the day – again suggests hyperventilation
If symptoms are improved by tranquillisers. This is because hyperventilation is caused by respiratory
stimulation and tranquillisers reduce the sensitivity of all departments in the brain – ie they make you
hypOventilate.
If symptoms occur at night – once the respiratory centre is sensitized it continues to make you breathe too
much even during sleep and this may result in vivid dreams or nightmares, disturbed sleep, unrefreshing
sleep etc.

John McLaren Howard has now developed a test for hyperventilation at Acumen. This measures levels of red
cell carbonic anhydrase. In chronic hyperventilation this becomes depleted so we now have a useful
measurement of whether there is a problem and if so, how severe. The cost is £40.

Typical Symptoms of Hyperventilation


The local symptom would be nasal blockage or asthma
The general symptom would be poor oxygen supply to all tissues (because low levels of carbon dioxide
make oxygen stick to haemoglobin so oxygen cannot be released to the tissues) resulting in poor
mitochondrial function and hence chronic fatigue.
Mouth breathing
Sensation of not being able to get one’s breath, sensation of not being able to get enough air, need to take
deep breaths, sigh, yawn, sensation of “not enough oxygen” (which is correct at the tissue level but not at
the blood level!!).
Lots of other symptoms which are not explained by allergies, low blood sugar, poor micronutrient status,
toxic stress etc.
Hyperventilation is the great mimic – it can produce almost any symptom!

How you can test yourself


Buteyko suggests you test yourself with his controlled pause: Sit comfortably in an upright chair, breathe
in normally and out holding your nose after the out breath. Count the seconds using a watch until you feel
you have to breathe in again. The number of seconds counted gives your control pause. The ideal pause is
60 seconds, but a pause of 40-60 denotes good health. A control pause of 30 means you are breathing
enough for 2 people and suggests mild asthma. A control pause of 15 seconds indicates you are breathing
for 4 people: this is serious hyperventilation. A control pause of 10 seconds denotes severe asthma.

The other method to check for hyperventilation is to do a forced test of over breathing. Sit and breathe
deeply through your mouth, as if you are running. Within 30-40 seconds you will develop unpleasant
symptoms which may include dizziness, palpitations, cough or wheeze. If your troublesome, recognisable
symptoms are flared, this suggests hyperventilation may be the cause.

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Treatment Of Hyperventilation
Firstly you must always breathe through your nose. This increases the amount of air which is exhaled and
immediately reinhaled and is therefore relatively rich in carbon dioxide. Mouth breathers must make a
conscious effort to close their mouths always, if necessary tape your lips closed at night.

Secondly, breathe less deeply and more slowly. Initially this brings a feeling of wanting to breathe more,
but this must be ignored. It is a bit like having an irritating itch and not being allowed to scratch it. Some
anti-hyperventilation techniques ask you to practice breathing using your diaphragm instead of your chest.
I don’t see the logic of this because whether you use your diaphragm or your chest muscle, air will still be
drawn into the lungs. Buteyko is similarly unconcerned about diaphragmatic breathing so in this we agree!
The results of reducing your rate of breathing are felt very quickly – within a few minutes – good positive
feedback to encourage you to continue! But improvement may continue over weeks so keep at it! The
difficulty is that you have to make a conscious effort all the time to breathe more slowly until the
sensitivity of the respiratory centre is reset – at which point the subconscious takes over and you will
continue to breathe at the correct rate, even during sleep. However, it may take hours, if not days, to reset
the sensitivity of the respiratory centre.

Thirdly if you catch yourself sighing, yawning or taking a deep breath, hold your breath for a few seconds,
breathe out very slowly, then start breathing slowly and shallowly again. Just a few abnormal breaths will
switch you into respiratory alkalosis. If you find yourself in a stressful situation, immediately go into your
slowed breathing exercises. Rebreathing into a paper bag helps carbon dioxide retention as, indeed, would
just rebreathing into your cupped hands.

Don’t be afraid to use tranquillisers to help you re-breathe correctly. If you combine the tranquillisers with
the breathing exercises, this helps to set up a conditioned reflex to slow the rate of breathing. For some
people in acute situations, diazepam works wonders, but its effects can be enhanced by doing the
hyperventilation exercises at the same time.

There is another mystery which may also be explained by hyperventilation. Virtually all of my ME patients
are magnesium deficient. Why? The body’s response to a respiratory alkalosis is to pee out bicarbonate.
Bicarbonate is a negatively charged ion and cannot leave without a positively charged ion. Guess which
positively charged ion goes out with it? Spot on – magnesium! Magnesium deficiency may well be another
indicator of hyperventilation.

Further information from the book “Freedom from Asthma, Buteyko’s Revolutionary Treatment” cost
£7.99 from the Nutri Centre Bookshop tel 0207 323 2382. Also “The Carbon Dioxide Syndrome” by
Jennifer and Russell Stark from www.buteykoonline.com

There is a useful website set up by Ann Pitman from the Physio-Hyperventilation interest group that may
be of interest. The address is www.physiohypervent.org There is also an e-mail address for Ann Pitman
Physiopitman@aol.com She does tapes which help greatly for DIY treatment.

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PSYCHOLOGICAL ASPECTS OF TREATING CFS
CFS Psychological or Physical?
This seemed such a stupid question that I never bothered to consider it. I estimate I must have now
seen over 4,000 patients with CFS and it is clear CFS is primarily a physical disorder. It is only when
patients have been ill for several months and been told by their physicians that nothing is wrong they
get secondary psychological problems. The only place where CFS does not exist is in the brains of
small-minded doctors.
The reason the "physical or psychological" debate continues is because the usual tests for pathology
come up showing normal results. GPs find ill patients, do the usual screening tests which come up
normal and feel this allows them to turn round to patients and conclude there is nothing physically
wrong. If however the screening tests included SPECT scans; sensitive tests of the hypothalamic-
pituitary-adrenal axis; T cell subsets; tests to look at mitochondrial abnormalities, mitochondrial
function tests, antioxidant status and tests of xenobiotic loads; enterovirus sequences in muscle and
brain; trace element levels, vitamins, essential fatty acids and amino acid profiles, then lots of
abnormalities would be found. Doctors would diagnose serious metabolic and hormone problems
and patients would be taken more seriously.
I believe the fundamental problem in CFS patients is that they have damage to their mitochondria
which results in impaired energy supply to all cells. Clinically as well as fatigue this manifests as
having lost their ability to respond to stress, be this physical, mental, nutritional, emotional,
infectious, financial etc. Our systems can be likened to a car - when we are pottering we are in first
gear. But as soon as the pressure goes on we need to move up a gear, or two or three gears, or
occasionally into overdrive, to cope with the situation. We can do this by releasing stress hormones
from the hypothalamus, pituitary and adrenal glands producing adrenaline, cortisol, sex hormones
etc. This effort can be sustained for a short length of time but eventually the person must "recharge
the batteries" with good food, holidays, fresh air, sleep and correction of all the above abnormalities
with respect to mitochondrial function, oxidant status, xenobiotics etc.

The psychological issues which need addressing are as follows:

PERSONALITY – the type of person who gets CFS is the goal driven, perfectionist, workaholic.
She has spent her life juggling the responsibilities of a job and family, as well as running the local
community, pursuing hobbies and taking evening classes! Usually she has done this at the expense of
her sleep and diet. The very personality that gets someone into CFS does not help to get them out of
it! The first step is to undergo a personality change – not easy!

BEING PISSED OFF – doctors often do not distinguish between the tears of frustration at not being
able to do things from the tear of depression. One has to learn to be happy with less. Not being able
to do things amounts to a BEREAVEMENT. Dealing with this frustration is a major problem for
many.

GET SELFISH – most CFS sufferers have spent their lives supporting others. It does not come
easily to be on the receiving end of support networks. To get well you have to look after number one.
PSYCHOLOGICAL SKELETONS – we’ve all got these. Sometimes addressing them can be
helpful. But sometimes not! People who have been abused either physically, mentally, emotionally or
sexually are at greater risk of CFS later on in life. This is partly because they do not feel in control of
their lives and this makes it even harder to make the necessary changes to recover from their CFS.

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LEARNED RESPONSES – these can be a real problem because sometimes when one has identified
and corrected enough of the underlying physical problems so that the person should be able to
recover, the body has “learned” how to be ill and one may need to use psychological techniques for
getting out of this particular rut. Indeed this can be a real problem in allergy. When one sensitises to
a food or a chemical the brain “learns” the response. Then even when it is physically switched off by
say EPD, the brain and immune system goes on producing the response even when the allergy is
switched off. This can be very difficult to deal with! See Plastic Rose
DEPRESSION – anybody who has been ill for any length of time can get depressed. I have to say
that the CFS patients I see are remarkably undepressed, especially given their circumstances! See
depression section.
A CFS patient is burnt out - usually by overstressing him/herself with work, sport, family
commitments combined with insufficient rest, poor quality food, allergies, acute or chronic
infections, excessive alcohol/smoking/sugar, chemical overload etc. He/she has lost the ability to
produce stress hormones and is stuck in first gear. Increasing stress (accelerator pedal) simply makes
the engine scream without going faster. Furthermore the patient often does not sleep well and this
compounds the problem. I could stock a good Olympic team with CFS sufferers - top athletes stress
themselves hugely and put themselves at greater risk of getting CFS.
With any illness there is a psychological component, but with CFS this is secondary to a physical
illness. I am always amazed how well adjusted are my CFS patients and depression is not a common
feature. The difference is that CFSs want to do things, but if they do they feel ill. They also tend to
wake late. With depression, patients don't want to do anything, but if you push them to exercise, they
actually feel better. Usually they have early morning wakening. I suspect this is why the "stimulating"
antidepressive drugs seem to make CFS worse - they increase the desire without improving the
performance and therefore worsen the frustration.
ANXIETY – sometimes this is a problem as patients start to get better. When they are so ill they are
often housebound. As they recover they lose the confidence to get out into the world again and this
stops them from doing things rather than the fatigue. In these situations drugs for anxiety can be very
helpful – such as diazepam 2-5mgs. If used on an occasional basis when the sufferer feels she is not
going to cope with a potentially threatening situation just “to take the edge off things” there is no
risk of addiction. The drug allows the sufferer to cope with the situation and so gain confidence in
their ability to do this in the future. With time and growing confidence the need for diazepam lessens.
I have one patient who used about 30 tablets a year – just the knowledge that she can use them
should she feel the need is enough to allow her to cope with most situations – the human equivalent
of an escape lane!
Rec Reading: Hans Selye "The Stress Of Life", McGraw-Hill Book Co, first published 1956, ISBN 0-07-056212-1

The Plastic Rose Syndrome! Learned symptoms


A man walks into an allergy clinic complaining of allergy to roses. The doctor puts a plastic rose
under his nose. The man sneezes. Is this a psychological or physical reaction? It is both. The new
buzz word to explain this is "psycho-neuro-immunology" (of the mind, the physical brain and the
immune system).

If you take a rat and scratch his skin, then rub in bacteria, he will develop inflammation. If you repeat
this daily, he will develop inflammation every day. After several weeks of this, you just scratch the
skin, but don't rub in bacteria. The rat will develop inflammation just as if bacteria had been rubbed
in. The immune system has learned to expect bacteria and reacted appropriately.

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The cells of the immune system are very similar to brain cells. They use similar neurotransmitters and
are responsive to hormones. They can plug in to the nervous system at numerous sites in the body.
They are intelligent, can recognise foreign substances and make decisions about whether or not to
attack such foreign substances, and/or call in help from other cells. Indeed they can be thought of as
brain cells which are not confined to the brain, but wander all over the body.

The first two examples above show us how these 'mobile brain cells' can be taught in exactly the
same way as 'fixed brain cells'. Clearly there must be channels of communication between our fixed
brain cells and our mobile brain cells (ie the immune system). The question is, how can we
communicate with our own immune cells when they start to go wrong? This is very important for
CFS sufferers in particular, because it seems likely that CFS is, at least partly, a disorder of the
immune system.

Unfortunately our immune cells don't appear to understand English! However we can communicate
with our subconscious using "the mind's eye". To make changes we have to positively visualise,
imagine and believe that changes can be made, and the brain will sort out for itself how to go about
effecting these changes.

One example of how the brain works is illustrated by a group of students who, in 1953 were asked to
write down their 'goals and ambitions' in life. Only 3% had positive goals they wanted to achieve.
When followed up 20 years later, that 3% were earning more money than all the rest put together.
That 3% had a clear idea in their mind's eye what they wanted to do and where they were going,
believed they could do it (with the confidence of youth), and achieved their goals.

Getting people better from CFS is like solving a jigsaw puzzle. All the right pieces have to be in the
right place at the same time. It may well be that we don't know all the right pieces. However the 'will'
to improve is a crucial part. I firmly believe that we all have an ability within us to help ourselves get
better - we have to 'tap in' to this resource.

Not only must one have the will (and a feature of CFS seems to be plenty of will!), but this desire
must be:
1. Clearly communicated at the subconscious level (talking to your subconscious).
2. There must be no blocks to this message getting through (identifying the blocks).

Talking To Your Subconscious


One effective way seems to be positive visualisation. In this technique, you have to imagine how you
want yourself to be, using small, realistic steps at a time. For example initially you have to imagine
yourself waking up and feeling good, enjoying the feeling of walking and moving, reading or writing
without fatigue, noticing the little things which are happening and interpreting them as signs of
improvement. The subconscious does not seem to respond to negative images. i.e it is no good
thinking "I don't want to be ill". You have to have a positive idea in your mind as to how you wish to
be. If you can think this sufficiently strongly, the message will eventually get through to the
subconscious and the immune system and this will act to get you better. The more clear the message
and the longer it lasts, the more effective it will be. Everybody has to work out their own particular
message. This may change with time as you have new ideas and improve and need another image of
yourself. Keep telling yourself how good you are.

Identifying The Blocks


Some people clearly want to get better, but there is some deep seated reason, some unresolved
psychological "pain" which is blocking possible improvement. Very often these patients don't know
themselves they have a block about getting better, and it make take a great deal of thought and

101
honesty with themselves to identify 'blocking factors'. For example once patients become ill and
unable to care for themselves, they lose a certain amount of responsibility for their own lives. The
thought of having to take responsibility again and the worry of not being 'reliably well' may provide a
subconscious block to improvement. Psychologically they cannot afford to get better. These people
can be thought of as having a 'psychological disability' which is just as disabling and difficult to deal
with as any physical disability.

A common psychological pain is for a person not to feel loved. Until the reason for that lack of love
can be worked through psychologically through understanding how the situation arose in the first
place, he/she will never be able to change to a "from now on I will feel loved" position.

Making Changes
Our personal identity is very important to us. We have certain traits and personalities which we are
resistant to changing. For example a naturally jolly person is expected to be jolly by other people and
is a cause for comment if he is grumpy. It is difficult for him to change to a grumpy person. Similarly
the reverse is true. Mr Scrooge made the change and it is cause for comment every Christmas! But it
must have been very hard for him - much easier to remain grumpy.

Beliefs
Unless you believe deep down you can make the change, you never will. The best form of
encouragement is positive feedback. If you see yourself getting better, you will think more positively
and improve further. See every little change as a sign of improvement.

How To Find Help - One of the big problems for CFS sufferers is money - often they simply do not
have the financial resources to pay for help. However professional psychological help could prove a
good investment. Even an occasional consultation may put you on the right lines to help yourself
further. Choose your therapist carefully - for example it is no good having somebody who does not
believe CFS exists! Psychotherapy is partly about communicating with the subconscious.
Hypnotherapy seems to bypass the conscious mind with all its blocks and inhibitions and 'plug in'
directly to the subconscious mind.

Further reading:
Love, Medicine and Miracles - Bernie Siegel
You Can Heal Your Life - Louise Hay
Quantum Healing - Deepak Chopra (and others by him)
ME and the Healer Within - Nick Bamforth
Climbing Out of the Pit of Life - Dr Darrel Ho-Yen. Cost £10, cheques to Dodona Books, from The
Old Schoolhouse, Kirkhill, Inverness, IV5 7PE.

RG (who recommends the above books) goes on to say "Finally this talking to the subconscious/unconscious can be
taken to extreme. We could become desperate searching for the right technique to get the message across to our
dammed, stupid, stubborn unconscious! Whilst I feel it can be productive telling our unconscious what to do, I think
we should also be listening to it. If we listen more, perhaps we will learn what is wrong with our bodies or our
lifestyle."

"I believe we have enormous inner wisdom that we need to contact if we are to be truly happy and healthy. Using
various techniques, we need to dig deeper and deeper, to connect with the unconscious, to connect with that inner
wisdom. Sometimes that inner wisdom reveals what is wrong inside our bodies. Where our inner wisdom is far more
useful in my view is in revealing what is wrong in our minds, in our hearts or spirits, what is wrong with the way we
live and love."

He also gives the following recommendations about finding a therapist.


1. Find someone who has been personally recommended by someone whose opinion you value. OR ask a 'professional

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carer' such as a GP, community psychiatric nurse (NHS CPNs can be contacted through your local Special Needs
Services, see yellow pages) or your local vicar for a recommendation.
2. Whoever you see, try to have an initial consultation with your therapist to see if you are both "compatible" ie you get
on well, you are clear what therapy entails, how long sessions last, how long is a course of treatment, cost etc.
3. Discuss with the therapist if you are not happy about therapy at any stage and, if necessary go elsewhere.

Heather Sharpe sums it up: Accept ~ Adjust ~ Achieve.

Antidepressants in CFS
Anybody with a chronic illness can become depressed and this needs treating as a separate issue. As
a general principle though expect to feel ill on “normal” doses of antidepressant. Many of my CFS
patients are diagnosed by their GPs as being depressed, put on “normal” doses, feel terribly ill, stop
the drug, then get into trouble for being “uncooperative” patients - “If you won’t take the drug then I
can’t help you any more”. Whatever is tried needs to be taken in small doses and gradually built up –
certainly some patients have been improved by small doses of SSRIs (Prozac like drugs) but the
majority are worsened. The best antidepressants – much better that drugs – are good quality sleep,
sunshine, laughter, love and exercise! Indeed sleep, sunshine and exercise (not available to CFS in
early stages!) have all independently been shown to be more effective than drugs.

St John's Wort (hypericum perforatum) has proven antidepressant properties and well worth trying
(see SLEEP AND SLEEPING DRUGS). However I have had two patients who have been made
much worse when they took the full dose, so be careful – start on 300mgs daily and build up slowly
to 900mgs daily.

5HTP – this is the natural precursor to serotonin (the “happy” neurotransmitter!). Before 5HTP
tryptophan, an amino acid, was widely prescribed and just as effective as Prozac at treating
depression. However, a batch of tryptophan came onto the market which was contaminated and this
contaminant caused several deaths from eosinophillic myalgic syndrome. Even though it was well
recognised that the tryptophan was not at fault, it resulted in a world wide ban on sales. The cynic in
me tells me this was a cunning ploy by the drug companies to get rid of a cheap, safe and effective
competitor. However, we now have 5HTP, which metabolically lies between tryptophan and
serotonin. 5HTP is remarkably free from side effects (it is only one step removed from an amino
acid, which is what protein is digested into). The usual dose is 100-300mgs at night. Serotonin is
converted into melatonin which of course helps sleep.

Protein → amino acids, including tryptophan → 5HTP → serotonin → melatonin.

Antidepressants are thought to work by increasing the levels of neurotransmitters in the brain. They
do so by slowing the rate at which the transmitters are broken down in the brain. I often find low
doses of anticholinergics such as amitriptyline 5-25mgs nocte helpful. 75-150mgs is a usual dose for
depression in a non-CFS sufferer but often makes CFS much worse at this dose.

I quite commonly recommend one of the sedating antidepressants to be taken at night. (These can
also be helpful if hyperventilation is a problem). The key to using antidepressants is to start with
small doses. CFSs seem to react to higher doses. This may be because their liver enzymes do not
seem to clear drugs from the blood stream as they should (incidentally this may be partly why CFSs
don't tolerate alcohol) or it may be there is a hypersensitivity in the brain. The most sedating
anti-depressant is trimipramine (Surmontil), dose range 5-75mgs.

The most commonly used in general practice are amitriptyline (Tryptizol) 5-75mgs nocte and
dothiepin (Prothiaden) 25-75mgs nocte – I don’t use dothiepin any more because of its long term
toxicity to the heart.

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I have not been impressed by the 5HT reuptake inhibitors like fluoxetine (Prozac) or sertraline
(Lustral). They are non-sedating and possibly mildly stimulant - therefore not indicated in CFSs (they
increase the desire, add nothing to the performance thereby increasing the frustration and rage).
There is no doubt they are effective in treating depression and if this is a big problem I sometimes
combine them with one of the above antidepressants. Again, they need to be started in very small
doses. The list of side-effects in BNF also distresses me. Also I suspect they are quite addictive
although the drug companies are vigerously denying this. I have had patients who get marked
withdrawal symptoms if they try to stop them. Furthermore during the first few weeks of therapy
patients must be carefully monitored because they can cause impulsive suicidal actions. Having said
that, I have one or two patients who feel they have been helped considerably by Lustral, another
SSRI.

Tranquillisers – these can be useful to help sleep (see section on sleep) and sometimes as muscle
relaxants. The best muscle relaxant is diazepam, but taking this regularly in the day can lead to
problems of addiction. The key is to use it occasionally not regularly. It also works well for
hyperventilation. Anxiety problems often arise as the patient starts to recover – they may be
fearful of going out in case they suddenly get acute fatigue and get stuck. This can amount to
agoraphobia and diazepam

PAIN CONTROL
Pain, like fatigue, is just a symptom of something going wrong and one should try to work out
the cause. The commonest causes are:

General pain: Failure to pace activity properly! Often people just do as much as they can within
limits of pain – ie their activity is limited by pain before fatigue. Actually this is unhelpful – pain
just means tissue damage and does not allow the sufferer to escape from their vicious cycles.
Hyperventilation – sufferers often feel “beaten up” after a night’s sleep
Poor quality “non-restorative” sleep – can be breathing too much at night
(hyperventilation) or too little (sleep apnoea syndrome).
Insufficient sleep

Low pain threshold:


Magnesium deficiency causes a generalised hypersensitivity to light, noise, smell etc but also to
touch and pain.
Anxiety and depression lower pain thresholds. Love and laughter raise pain thresholds!
Treatments: increase endogenous opiate production by love and laughter, massage, acupuncture,
heat, sunshine.
Drug medication is sometimes useful such as low dose antidepressants, gabapentin, low dose
naltrexone. See www.lowdosenaltrexone.com

Muscle pain (limbs, trunk or chest pain)


Poor magnesium status – Mg deficiency causes a tendency to muscle spasm as well as

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microscopical muscle fibre damage. This is a major and common cause of muscle pain.
he benzodiazepines are good muscle relaxants and I prescribed these largely for use at
night.
Poor antioxidant status – see above
Toxic stress – OP sufferers often present with chest pain – consider fat biopsy and detox
sweating regime. Silicone problems often present with burning pain in muscles skin and feet.
Muscle damage – if this occurs one sometimes sees raised levels of creatinine phosphokinase
(CPK) in the blood.
Joint pain - allergy (inflammatory arthritis – allergic or autoimmune) – do Stoneage diet – joints
can take up to 6 weeks to improve.
- degenerative - nutritional deficiency – boron 20mgs, glucosamine sulphate,
vitamin D up to 4,000i.u. daily.
- hormonal – underactive thyroid or osteoporosis. All CFS sufferers require a bone
density scan because inability to exercise is a risk for osteoporosis
- poor posture – this is a real problem in CFS because sufferers do not have the
muscle power to hold themselves in the correct posture at all times. An opinion
from a physiotherapist or osteopath is always to be welcomed! I recommend
“Treat Your Own Back” by Robin McKenzie.

Trapped Nerves – such as carpel tunnel syndrome, sciatica, can be due to hypothyroidism, to B6
deficiency (well worth trying pyridoxal 5 phosphate 100mgs daily), poor posture. Also see
degenerative joint pain.

Useless inflammations – such as “tennis elbow”, “housemaid’s knee”, “Jeep bottom” and other
such repetitive strain injuries. Old fashioned poulticing with comfrey ointment (comfrey next to
skin, hot damp flannel above, plastic layer then hot water bottle and towel to keep the area
warm) or applying arnica, witchazel are all very helpful.

Headache – in order of important: addictions (hypoglycaemia, caffeine etc), allergy to foods,


allergy to chemicals (prescription drugs, cosmetics, multiple chemical sensitivity).

Gut pain – once pathology (such as cancer, gallstones) has been excluded, gut pain is nearly
always due to dietary factors, or gut dysbiosis, or a combination of the two.

GORD (gastro-oesophageal reflux) is often a symptom of hypoglycaemia, allergy, yeast infection


or simply stress. It is not caused by a hiatus hernia and is not a symptom of proton pump
deficiency!

Bladder pain – is a symptom of inflammation in the bladder which can be infection (check with
multistix) or allergy. Commonly this is allergy to yeast but increasingly I am seeing cases of
interstitial cystitis which is often triggered by chemicals and worsened by further exposures.

Problems always arise when the sufferer does not have the mental, physical and emotional energy
to put in place the things necessary to cope with pain or because there is no other treatment – as
for example with a trapped nerve. In this event pain killers are useful. I use them largely at night
to help sleep simply because pain in Nature’s way of telling you to rest or avoid and if we ignore
Nature it is at our peril! All pain killers have side effects!

The following is an article which I wrote for Action for ME which is an overview of the
treatment of muscle pain:

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Muscle Pain in Chronic Fatigue Syndrome Updated Jan 2006
Chronic fatigue syndrome is a symptom which may have many causes. The causes of chronic fatigue
syndrome are often the same as the causes of muscle pain and so these two symptoms are often
found together. It is not that one causes the other, simply they have a common underlying cause.

In considering any patient with muscle pain, the first question to ask is whether it is generalised muscle pain or
local muscle pain. This is simply because generalised muscle pain will have a general cause, whereas
localised muscle pain will have a local cause such as nerve pressure or physical damage. This article is about
generalised muscle pain.

The key to any diagnosis is to identify something that can be treated and corrected. When I see a patient with
muscle pain, I am trying to think of the underlying mechanism which is causing that muscle pain, which will
thereby give a clue to treatment. The sort of causes I am thinking of, and I am quite sure this is not an
exhaustive list, in order of importance are as follows:
Disuse Pain
A major cause of muscle pain is disuse. This needs a little explanation. The heart is responsible for pumping
blood away from the heart to the body and of course much of the body is made up of muscles. The muscles
themselves are largely responsible for pumping blood back to the heart. This occurs because when muscles
contract they squeeze the blood out of them and a series of valves in our veins ensure the blood can only go in
one direction that is back to the heart. When the muscles are at work and indeed even at rest they are making
energy (in order that they can work) and the process of energy making inevitably creates toxins and free
radicals. This muscle pump also does another job, that is it physically squeezes these toxins out of the
muscles and into the blood stream where they can be detoxified and carried away.
Problems arise when the muscles stop being used. Toxins tend to build up in the muscles, even when the
muscles are at rest, and if they get to a critical level they will cause pain. The muscle’s response to pain is to
go into spasm. When the muscle is in spasm, blood cannot get into it neither can it get out of it and toxins
build up even more quickly. So suddenly one is in a vicious cycle of muscle spasm causing toxic stress which
causes more muscle spasm. The pain from muscle spasm can be extremely severe. For example labour pains,
renal colic and biliary colic from gallstones is all muscle spasm pain. The majority of low back pain problems
are also due to muscle spasm.
This, therefore, explains the benefit of many therapies such as massage because without the muscles having to
work at all they are physically squeezed which stimulates the blood circulation and so toxins in the muscle are
squeezed out.
If you watch any animal after it has lain down and slept or rested for some time, they invariably get up and
stretch. This stretch passes through the body like a wave and every single muscle is contracted – this
physically squeezes out the toxins which have built up during sleep or rest. This is then followed by exercise
as the animal gets into its daily routine. Compare this with humans who sleep long hours at night and on
rising often do not bother to stretch, let alone take any exercise.
The commonest group of muscles that are affected like this are the core muscles of the back and pelvis.
Indeed I suspect this mechanism explains the majority of low back pains, which are often triggered by a very
minor incident such as twisting awkwardly or reaching up to pick something off a shelf or whatever. Such a
minor movement would not be sufficient to cause structural damage, but sometimes it is the last straw which
triggers one into the vicious cycle of toxic build up and muscle spasm.
In the acute phase, therefore, anything which can be done to improve blood flow such as heat and massage are
extremely helpful. This also explains why wearing a corset is so helpful because very minor exertions greatly
improve the pressure in the muscle and therefore toxins are squeezed out very efficiently. However, in the long
term corsets weaken core muscles and should not be used as a long term panacea.
So the key to avoid these sort of muscle pains and spasms is to make sure you go through a regular daily
routine of stretching and gentle exercise. Just a few minutes a day suffices to help most people and there are

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many regimes available such as Pilates and yoga. This also explains why traditional advice of bed rest for
acute backs actually makes the situation very much worse.

Energy Supply to Muscles


For muscles to work they need energy. Interestingly, they also need energy to relax as well as to contract. I
now see chronic fatigue syndrome as a symptom of mitochondrial failure. Mitochondria are the little engines
which power every cell in the body and if they cannot deliver energy to the cell, then that cell will go slow.
Energy is supplied to the cell by mitochondria in the form of ATP (adenosine triphosphate), which releases its
energy when it is converted to ADP (adenosine diphosphate). ADP is then recycled in mitochondria back to
ATP. CFS patients are slow recyclers – if a normal person recycles ATP every 10 seconds, perhaps Steve
Redgrave recycles every 5 seconds, CFS sufferers may recycle every 60 seconds! So I can do in 10 seconds
what Steve Redgrave can do in 5 seconds but that task would take a CFS sufferer 60 seconds! However, if the
CFS patient pushes himself too hard, ATP production cannot keep up and so the body switches into anaerobic
metabolism whereby a small amount of ATP can be made from converting glucose into lactic acid. However,
lactic acid quickly builds up in muscle, which causes pain.

Everybody has experienced this sort of pain. If somebody asked me to sprint 100 metres then by the end of
that my muscles would be aching, heavy and dead because of lactic acid that has built up. So if patients get
this type of muscle symptom then I am thinking about poor energy supply by mitochondria.

This, of course, is the central problem in chronic fatigue syndrome and wants to be treated as per my routine
work up for all patients with chronic fatigue with respect to diet, micronutrients, sleep, pacing and so on.
However I am coming to the view that some sufferers are “metabolically dyslexic”. That is to say they cannot
make the necessary enzymes for mitochondria to work well simply from diet and supplements – they can have
all the letters of the alphabet but they cannot make the words! As they cannot make their own Co-enzyme Q
10, D-ribose or whatever then these have to be supplied directly. We can test for levels of some of these
essential nutrients, but some have to be supplied. So far my clinical experience is that the two most helpful
nutrients for muscle pain are magnesium (take as much as possible without getting diarrhoea – but some do
require magnesium by injection) and D-ribose (5 grams taken three times daily).

Poor energy supply from mitochondria not only affects local metabolism in muscles causing a rapid build up
of lactic acid, but also affects the muscle of the heart. Indeed many symptoms of chronic fatigue syndrome are
caused by poor cardiac output secondary to cardiac muscle failure, secondary to mitochondrial failure. This
low cardiac output alone can cause muscle pain. This is because the body has to look after the important
organs first and blood is directed largely to the kidneys, liver and gut and diverted away from less essential
areas like skin, muscle and joints. So patients with poor circulation, cold hands, cold feet, intolerance of hot
weather (because they cannot lose heat through their skin) and muscle pain, (particularly when associated with
chest pains), may indeed be suffering from low cardiac output. Very often they have low blood pressure and
feel much worse standing up than lying down.

Magnesium Deficiency
To understand this a little knowledge of how muscles work is useful. Think of muscle fibres working like lots
of little men in a rowing boat, all with oars and all working together. In order to make muscles contract, they
dip their oars into the water and pull themselves along. For muscles to relax the oars need to come out of the
water. Muscle contraction is calcium dependent and muscle relaxation is magnesium dependent. So for the
oars to come out of the water they need magnesium and if this is not present, the oars get stuck in the water
and will snap off. So the magnesium deficient patient every time he stretches or relaxes his muscles will cause
muscle damage and this results in pain. So if I see patients who get muscle pain as a result of exercise then I
would first think of magnesium deficiency. I would want to measure levels by doing an intracellular red cell
magnesium (a serum magnesium would be a useless test) and correct levels possibly with oral supplements,
possibly Epsom salts baths (magnesium can be absorbed through the skin), possibly with magnesium by
nebuliser, but the only way I can guarantee to get levels up is magnesium by injection.

Inflammation
In some ways the body is not very clever. The immune system can only react to things in one way and that is

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with inflammation. Inflammation is designed to kill viruses, bacteria and parasites and to do this the immune
system has to release nasty toxic substances which kill these bugs and these are called cytokines (cell killers),
leukotrienes, interferons, superoxides, nitric oxide and other such free radicals. Unfortunately these
substances are rather indiscriminate and not only kill bugs, but also damage the body. So inflammation is very
much a two edged sword with the ability to do great good and great harm. Inflammation in the muscles causes
muscle pain. Typically this muscle pain is worse in the morning and improves as the day progresses.
Sometimes tests show up muscle inflammation, either because of a raised ESR, a raised plasma viscosity or a
raised C-reactive protein , or raised levels of muscle enzymes such as CPK.

Inflammation in muscles therefore obviously can be caused by chronic infections, but it can also be caused by
autoimmunity and by allergy. The clinical clue to this is a symptom of being worse in the morning. Tests to
eliminate infection and/or autoimmunity can be helpful. Tests for allergy can be unreliable and initially I would
suggest an elimination diet based on foods which are uncommon allergens. I favour the Stoneage diet based on
meat, fish, nuts, seed, vegetables, fruit and water.

Poor Antioxidant Status


All cellular processes, in particular creating energy, will produce free radicals. If you produce a fire you will
make smoke. Free radicals to the chemist are molecules with an unpaired electron – this makes them very
unstable, highly reactive and as a result they tend to stick on to anything that comes to hand. This may be cell
membrane, cell organelles, DNA, or whatever. In doing so they cause damage and if the damage is extensive
this can trigger an inflammatory process with release of nasty toxic substances which cause even more
damage. Happily the body has evolved an excellent antioxidant system which mops up these free radicals
before they have time to do serious damage. The body makes use of anything which is available and many
vegetables, nuts and fruit contain natural antioxidants. The best known antioxidants are vitamins A, C, E and
selenium, but the body also makes its own antioxidants such as superoxide dismutase and glutathione
peroxidase. Other vitamins in high doses also have antioxidant effects, in particular vitamin B3 and vitamin
B12. Melatonin, which is the natural sleep hormone, has important antioxidant action.

Therefore, one can see that a deficiency of any of these substances could cause muscle pain because of free
radical damage. I routinely use B12 injections in my CFS patients and there is often a beneficial effect on
muscle pain because of the ability of B12 to scavenge nitric oxide. Also I often measure levels of superoxide
dismutase, commonly find deficiencies in chronic fatigue syndrome and this can be corrected by supplements
of copper, manganese, and zinc. Glutathione peroxidase requires amino acids and selenium for its synthesis,
hence the importance of a high protein diet.

Hormonal Effects
It took a delightful Buddhist monk from Northumberland to teach me that the symptoms of underactive thyroid
can often present with muscle pain. In fatigue syndromes there is a general suppression of the hypothalamic-
pituitary-adrenal axis and one tends to see low normal levels of hormones across the board (thyroid hormones,
adrenal hormones, melatonin, growth hormone and so on). To assess thyroid function one needs a blood test to
measure a TSH, a free T4 and a free T3. Very often in patients with fatigue I see low free T4s and low free
T3s and patients feel very much better when they are running high normal free T4s and free T3s, albeit with a
slightly suppressed TSH. If mitochondria are the engines of a car, then the thyroid gland is the accelerator
pedal. If it is stuck at 20 miles an hour then the poor patient cannot go any faster.

I have seen cases of muscle pain improving when DHEA levels are corrected – there is a simple test available
just requiring a salivary sample and the usual maintenance dose is 25mg daily.

Hypoglycaemia
Yudkin et al explains all in the Lancet May 2005! Too much sugar in blood vessels going to muscles is very
damaging to muscles. The control of the blood supply to muscles is by a tiny collar of fat which wraps itself
round tiny arteries (arterioles). If the blood sugar rises, this collar of fat releases a cytokine which makes the
arteriole contract. This has the metabolically desirable effect of preventing too much sugar getting to muscle
and damaging it. However, it also has the undesirable effect of impairing the blood supply to the muscle, so
the muscle cannot work properly. Also the cytokine released by the fat causes inflammation and damages the

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arteriole wall. And don’t forget in CFS we see high levels of cytokines! Indeed, this is probably the basis of
high blood pressure and arterial disease. The general presumption is that these cytokines come from immune
activity as a result of viral or toxic stress. But they could be produced by fat cells as a result of too much
carbohydrate in the diet! (Reference: Lancet 2005: 365:1817-20 “Vascorine” signalling from perivascular fat: a
mechanism linking insulin resistance to vascular disease).

The treatment of hypoglycaemia is to do a diet based on foods of low glycaemic index namely meat, fish, eggs,
oils, nuts, seeds and vegetables – care should be taken with grains, root vegetables, sugar and fruits, which are
high GI foods.

Treatment of Muscle Pain


I have tried to explain some of the mechanisms by which muscle pain is produced. However, some of these
mechanisms also have common causes. For example magnesium deficiency will cause muscle pain because
muscles are unable to relax without causing damage, because magnesium is the spark plug which fires the
engine, i.e. the mitochondria in every cell, because magnesium deficiency pre-disposes to allergies and
magnesium is also required in the manufacture of thyroid hormones. So really treatment of muscle pain
should be as per my treatment for chronic fatigue syndrome, i.e. start off with the basic essentials with respect
to diet, micronutrients, sleep and pacing and this addresses many of the underlying problems. Then one can
move on to the more esoteric treatments such as magnesium injections, B12 injections, correcting thyroid and
adrenal status, looking for specific deficiencies of vitamin B3, superoxide dismutase, Co-enzyme Q10, specific
vitamins and minerals and essential fatty acids. What I have not discussed above, but what is also a major
cause of muscle pain is mitochondrial damage by toxins such as pesticides, heavy metals, volatile organic
compounds and foreign bodies such as silicone. These all cause muscle pain because of direct damage to
mitochondria and need to be dealt with by doing a good detox sweating regime.

I find myself most often caught out by patients who are multiply intolerant of foods, who have undiagnosed
multiple chemical sensitivity or mould allergy.

If the muscle pain does not settle from the above interventions this can be because one cannot break the vicious
cycle of allergy, inflammation and micronutrient deficiency. Sometimes one just has to revert to medication to
try to tackle some of the underlying pain and inflammation and then this gives the body a chance to respond to
the diet and supplements. The medical profession like to use non-steroidal anti-inflammatories and Cox II
inhibitors – the trouble with these is that they all cause leaky gut and therefore increase any tendency to allergy
or autoimmunity. In addition, nearly 20% of patients taking these drugs will develop bleeding from the gut
and a small proportion can go on to get gut strictures. So I am really not a fan of using these drugs, but there
are some excellent herbal alternatives which seem relatively free from side effects which are well worth trying.
The ones that I most commonly recommend are:

• Willow bark tablets – 100 – 120mg daily


• Green tea – the polyphenyls in green tea have powerful anti-inflammatory effects and are cox II
inhibitors
• Ginger – this inhibits both cox II and leukotriene synthesis as well as inhibiting the metabolism of
arachidonic acid. I suggest using up to 1000mg of fresh ginger root daily. Indeed chewing fresh
ginger root is an excellent treatment for gum disease and dental plaque!
There are many other herbal preparations which are said to be anti-inflammatory, but I do not have experience
of using them, so I cannot comment. These include Stephania tetrandra, frankincense, lutioline, stinging nettle
leaf and holy Basil. Vitamin Research Products have put these into a product called Advanced Inflammation
Control available from Vitamin Research Products www.vrp.com.
Allergy problems
Allergies can certainly present with pain and the commonest two early symptoms of allergy are migraine and
irritable bowel syndrome. I would suspect allergy if there was any family history of allergy (including asthma,
eczema, hayfever, urticaria, migraine, IBS etc), if there were a long history of lots of different symptoms, or if
the person had an addictive tendency. Addictions are extremely common, start off with sugar and
carbohydrates and move on to caffeine, nicotine and alcohol – many of my allergics are also addicts and indeed

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many allergics get addicted to those foods to which they are sensitive. Very often one can pick the offending
food from a good dietary history since the wheat allergic often eats a lot of wheat and the dairy allergic gets
hooked on dairy products. Unfortunately, blood tests for allergies are notoriously unreliable and the only
really reliable way of finding out what one’s allergies are is to do an elimination diet. Occasionally I have
people who react to many foods and for those people it is not a good idea to restrict the diet excessively or they
end up eating just one or two foods and get very stuck on very restricted diets. For these people I use
desensitisation and for this you will need to find a practitioner from www.ecomed.org.uk It is also possible to
be allergic to inhalants, chemicals and micro-organisms and chemical sensitivity can certainly present with
pain.

Toxic Stress
I now consider it centrally important for all my patients to do detoxification regimes to reduce their
load of heavy metals, volatile organic compounds, pesticides and other such toxins. The best way of
detoxing is through sweating regimes because this eliminates all toxins from the body regardless of
what they may be. Sweat essentially is blood without the cellular and protein content and the key to
sweating is to re-hydrate with a physiological mix of minerals. The reason for this is that in sweating
one gets rid of good things as well as the bad and one can become very deficient if you are not
careful to re-hydrate with the good. Obviously as well as getting rid of toxins one must work hard
to do a chemical clean up of one’s environment to avoid ongoing exposure. It is easy now to
measure toxic loads by doing fat biopsies for VOCs and pesticides and a sauna sweat test, which
measures levels of heavy metals. Nowadays I do not use hair analysis for heavy metal toxicity
because many people simply do not dump heavy metals in hair and the result can be misleading.

Low Pain Thresholds


This seems to be a feature of patients with fatigue syndromes and is a symptom of magnesium deficiency. I
have had some success treating patients with low dose naltrexone – see www.lowdosenaltrexone.com. The
idea behind drugs such as amitriptyline, carbamazepine and Gabapentin is to increase pain thresholds.
Psychological techniques such as hypnosis, NLP and transcendental meditation can also be helpful in
increasing pain thresholds. Hyperventilation seems to lower pain thresholds and it is always well worth getting
assessed by a physio to see if there is any evidence of hyperventilation. We can now do a test to measure red
cell carbonic anhydrase which becomes depleted in hyperventilation – this makes the whole business of
diagnosis much easier and objective. This is because the worst hyperventilaters usually vehemently deny that
they hyperventilate!
FOURTH STAGE: EITHER MULTIPLE ALLERGY OR ALLERGY TO MOULDS
OR TO CHEMICALS
I am always being caught out by allergies to chemicals and/or moulds. They are the most difficult to
diagnose because one is never free from them. Most chemical sensitivities are to chemicals in the
home. Furthermore moulds are ubiquitously present in UK, especially with our increasingly damp
climate. I have one patient who graphed the intensity of her symptoms day by day over one month.
Independently of her, a local amateur weather forecaster measured daily humidity. The graphs
exactly coincided – so when it was humid, mould counts were high and my patient was worse.

Sometimes the most efficient way of determining whether moulds and chemicals are a problem is to
go and spend time (ideally one month, not less than two weeks) in a hot dry climate such as Southern
Spain. Here the older buildings are simply constructed with no call for insulating materials, damp
proof courses, plastic window frames, carpets or central heating, they are freely ventilated and mould
counts are low. In the UK the best place to go is the coast, where onshore sea breezes ensure low
mould counts and low pollution.

It is possible to do skin tests for mould and chemical sensitivity, but ideally these should be done in a
controlled environmental unit and at present there is no such unit open in this country.

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MULTIPLE CHEMICAL SENSITIVITY – WHAT IS IT?
The body is daily exposed to substances which have the ability to damage or even kill it. From an
evolutionary point of view, these substances have traditionally included viruses, bacteria, yeasts and
fungi, poisonous foods and other such nasties. The body reacts against these substances via the
immune system. The immune system learns to recognise the substances and react against them with
inflammation, which effectively kills or denatures that substance.

The problem is that in recent years man has developed a new range of toxic substances, such as
pesticides and solvents. These chemicals are equally toxic to the body and the body recognises this.
To cause damage the chemical either has to be particularly toxic, or present in a high concentration
and this appears to switch on the immune mechanism for identifying and reacting against chemicals.

Everybody knows that once you have had measles you are protected against future attacks because
the immune system has learned to recognise the measles virus and attacks it vigorously before the
numbers can build up and cause an infection. Exactly the same principle (but possibly a different
mechanism) applies with chemical sensitivity. Once the body has been damaged by an overwhelming
dose or a toxic dose of a chemical, the body learns to recognise very tiny amounts of this chemical
and reacts against it accordingly. This is probably the first step in developing chemical sensitivity.
However, chemicals are often related and the next step which happens is that the body then starts to
react against other related chemicals. This is called the spreading phenomenon and results in
multiple chemical sensitivity, whereby one reacts to lots of different chemicals.

The body has more than one line of defence. The immune system is just one, but we are intelligent
beings and just as one might choose to avoid spending time with somebody who has got influenza,
one also chooses to avoid inadvertent exposure to chemicals. The presence of these chemicals can
often be sensed by smell and the body quickly learns that smelling a substance will subsequently
result in severe symptoms. Indeed this quickly becomes a conditioned response (just like Pavlov’s
dogs), whereby just the smell of a chemical will induce the symptoms.

So multiple chemical sensitivity is an acquired sensitivity to chemicals (which may be noxious


initially, but often innocuous subsequently), which is triggered by a tiny exposure to a chemical,
which may result in a multiplicity of symptoms, which may take hours or even days to clear.

There are many degrees of multiple chemical sensitivity. In a random telephone survey of United
States citizens, it was shown that 7.8% of the population said that they were intolerant of certain
chemicals and avoided them. Many people will tell you that perfume makes them sneeze, petrol
fumes cause nausea, alcohol makes them feel spaced out and dizzy, paint fumes may cause headache.
These are the minor and easily avoidable chemical incitants. However, for some people their
sensitivity is so severe that they are unable to tolerate even the slightest exposure to chemicals, as a
result of which they have to live in carefully controlled clean environments. The slightest exposure
to chemicals causes severe symptoms and they are simply unable to go into an uncontrolled
environment. These people are made prisoners in their own home, being unable to go out into cars,
travel into any public place, or meet other people who may be wearing the very cosmetics, perfumes
and fabrics which make them ill.

MULTIPLE CHEMICAL SENSITIVITY – WHO GETS IT?

Multiple chemical sensitivity can occur in anybody, but very often there is some overwhelming
exposure to a toxic substance which triggers it in that person. The groups of workers with well
documented chemical sensitivity following occupational exposure are as follows:

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Gulf war veterans
Homeowners exposed to pentachlorophenol wood preservatives
Homeowners/Office workers exposed to organophosphate/carbamate pesticides
Hospital workers
Sheep dippers exposed to organophosphate pesticides
Radiology workers exposed to film developing chemicals
Solvent-exposed workers
Office workers and teachers (various indoor air exposures) – otherwise known as sick building
syndrome
Homeowners/office workers exposed to volatile organic compounds associated with remodeling –
such as new carpets, new paint and new office furniture
Casino workers exposed to mixed pesticides
Implant recipients
Chemical weapons production workers
Agricultural workers exposed to organophosphate pesticides

In all these cases there has been excessive exposure to chemicals with MCS resulting. It is quite
clear from inspection of these lists that the reason MCS is denied by the establishment is because all
these illnesses are caused by exposures in the workplace. To admit that MCS exists and is as a result
of these exposures would result in major litigation.

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ENZYME POTENTIATED DESENSITISATION (EPD)
I end up using EPD in about 1 in 10 of my new CFS patients. I use it for three reasons:

1. To turn off allergies (to foods, chemicals and inhalants) in patients with clear allergy symptoms
which cannot be controlled by avoiding the offending substance. Or because they start to acquire
new allergies. EPD has been proven in double blind placebo controlled trials to be effective in the
treatment of allergy.
2. In patients with complex problems in whom I am not certain to what extent allergy is a part but I
think it is a large part. This often includes patients with dysfunctional gut syndrome (gut
fermentation).
3. Because I can't think what else to try. These may seem like a poor reason, but I have several
patients who have got much better on EPD for no apparent reason. It may well be because EPD is
thought to be an immune regulator and it "adjusts" the immune system in ways unknown.

Introduction – General Information


EPD is a vaccine which can be used to desensitise patients to both foods and inhalants. The vaccine
has been developed and refined by Dr Len McEwen over the past thirty years. It is supplied to the
user who mixes the appropriate dose in a sterile environment, immediately prior to dosing.

The vaccine contains:


1-3 diol a kind of alcohol which activates the enzyme. It is used in a tiny dose.
β-glucuronidase. This appears to act as a lymphocyte hormone ( lymphokine ). It occurs naturally in
human blood. The amount present in the vaccine is equivalent to that normally present in 1cc of
normal plasma ( white cells contain much more ). In the vaccine it is thought to be responsible for
stimulating the Langerhan cells to migrate to the local lymph glands and "reprogram" a new
population of T suppressor lymphocytes. In the presence of antigen in the appropriate
concentrations, this will result in a desensitisation. ( Conversely in the presence of antigen at a
"wrong" concentration you may get a hypersensitisation ).

Because EPD relies on the production of a new generation of cells, the effect of each dose will not
be fully developed for at least 3 weeks. Simple allergics, such as hay fever, usually respond to the
first dose. But doses of EPD are cumulative and a few of the more complex allergic patients will not
start to improve until 8 or more doses have been given.

Antigen mixes:
The beauty of EPD is that one injection can be used to desensitise to a great many allergens. And
there are theoretical and practical reasons for preferring to desensitise with antigen mixes rather than
so-called "single allergens". The following mixes are most frequently used:

"X" - mixed foods and additives, mixed moulds, mixed pollens, cat-dog, flock fly mix and bacterial
mix.
"I" - inhalants alone. This is used to treat hay fever, cat, dog, horse allergy, pure mould and
housedust allergy.
Separate mixes of "odds and ends", laboratory animals and sawdusts are also available
"Fumes mix" - contains perfume oils, terpenes and other antigens which are not miscible with water

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unless they are extremely dilute.

Antigen Strengths
EPD works by manipulating the normal immune processes for creating and turning off allergies.
Therefore success or failure depends largely on priming the patient in the best possible way. What
makes EPD critical is the amount of antigen present at the injection site, at the time of injection. For
the low dose "θ" strength, the aim is to have approximately 10,000 molecules of each food antigen
for desensitisation present at the injection site. Most patients receive Xθ for food allergy.

For inhalant desensitisation of the airways, the best dose ( designated "C" strength ) is equivalent to
that received in a prick test. So most patients for seasonal hayfever or asthma would receive IC.
Patients with chemical sensitivity receive the fumes mix at θ strength.

Allergen Exposure At The Time Of Treatment


Treatment for seasonal allergies should be given at least 4 weeks before the season begins. There is a
theoretical risk that one might hypersensitise a patient if he/she is exposed to allergens at treatment
time. However, I have now been using EPD for 10 years and have given over 2,000 treatments and
have not seen this happen, therefore there are no special precautions a propros environment.

Desensitisation for foods works best if the patient sticks to their “safe”, ie non-reacting foods for the
24 hours before and 3 days after the EPD injection.

Theoretically there is nothing under the sun, including the sun, to which one cannot be allergic. It is
not uncommon to see patients who have become sensitised to their own gut flora. In these cases it is
necessary to reduce the antigen load starting 4 days prior to a dose of EPD. The commonest problem
is gut fermentation and drugs used to pretreat include Sporanox and nystatin powder. Allergy to gut
bacteria requires pretreatment with antibiotics.

Indications For Use - any condition caused by allergy such as


Asthma, eczema, rhinitis, chronic urticaria, angioneurotic oedema.
Hyperkinetic syndrome
Migraine and chronic headaches
Irritable bowel syndrome
Inflammatory bowel disease
Food induced psychological states - depression, anxiety.
Post viral syndrome
Multiple food allergy
In some instances, hyperventilation is caused by food allergy.

I do sometimes use EPD for the worst possible reason, that is I can’t think of anything else to do
when all else has been tried. However it is surprising how often this works! Hidden allergies to
foods, inhalants and chemicals are common causes of recalcitrant symptoms! One of the joys of using

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EPD is that it desensitises to all allergens across the board, so it is not essential to know all one’s
allergies for it to work.

EPD Can Be Blocked By:


Acute viral infections immediately during or after treatment. If there is any suggestion that the
treatment has not taken because of a viral infection then I invite patients to come back in a month for
a top-up, for which there is no charge.
Stress - try to make the EPD day an easy one!
Nutritional agents: mega doses of vitamin C may upset EPD (ie more than 2 grams a day), cod liver
oil – stop these for 1 week before treatment and for 2 weeks after.
Drugs: paracetamol, aspirin, NSAIs, Ketotifen, slimming pills, ventolin, bricanyl in large doses (6
puffs a day is fine), trimethoprim, Septrin and antimalarials, Cimetidine or Ranitidine, Migraleve,
"cold cures”.

Asthmatics who rely heavily on their inhalers are a special problem - up to six puffs a day of their
bronchodilator is safe. For this group it is often best to use a short course of steroids ( such s
prednisolone 15mgs one day before and 3 days after) to reduce the need for inhalers. Aminophylline
helps EPD and is also useful.

Success Rate
A pessimistic estimate would be that EPD will fail in about 20% of suitable patients with known
allergies. The rest will experience varying degrees of improvement. Follow up studies after 5 years
and double blind trials suggest that EPD has much greater long-term success than any other method
of immunotherapy.
Safety
Approximately 500,000 treatments of EPD have been given world wide over the past 35 years. For
patients with severe anaphylactic type reactions I first skin test with a tiny dose of antigen. If there is
no reaction I then use the "cup" method whereby the epidermis of the skin is scraped off and the
vaccine applied in a 1.5 ml hemispherical plastic container. This can be removed and antigen wiped
off in the event of any reaction. About 100,000 treatments have been given by the “cup” method.
There have been no life threatening reactions with EPD. It must always be remembered that when
foreign antigen is injected the usual safety precautions should be taken. I always carry adrenaline,
antihistamines, steroids etc but I have never had to use them, or even consider using them in any
patient.
Trials
Published double blind trials have shown that EPD is effective in the treatment of seasonal hayfever
and asthma (several trials ), ulcerative colitis, childhood migraine and hyperactivity. At the time of
writing EPD has also been successful in further double blind trials studying hay fever ( 4 trials ) and
childhood house dust mite asthma. The results of all these trials will be submitted for publication.
Uncontrolled trials have also shown benefit in the treatment of eczema, irritable bowel syndrome,
urticaria, rhinitis and asthma. Clinical experience from over 100 clinicians working world wide ( and
growing ) is encouraging. More trials are urgently required. The American audit of EPD patients
shows results that are so good that I can hardly believe them!

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Instructions to follow for every dose of EPD
When I first started using EPD in 1988, there were strict instructions for patients to follow apropros
diet and environment. These applied because there is a theoretical risk that patients could make
themselves more allergic. However I now believe these risks are purely theoretical - in practice this
does not seem to happen.

Diet For the 24 hours before EPD and three days after I recommend eating those foods to which you
are not presently reacting against badly. i.e. your normal “safe” diet. However I recommend avoiding
alcohol for that period.
Environment Try to avoid unnecessary exposure to strong chemicals and fumes for the 24 hours
before and three days after.
There is no theoretical reason why EPD should be avoided in pregnancy and indeed I have treated
many ladies with EPD throughout pregnancy. The only problem is that should anything go wrong,
the EPD may be unfairly blamed.

If a cold/flu is caught immediately after EPD the treatment may be spoilt, in which case I invite you
back for a free top up.

Vitamins and minerals. Continue to take your normal supplements. However there are some
supplements which are under suspicion as upsetting EPD. I am not convinced of these because many
of my patients take these and the treatment works perfectly well. However, for your information
beware of cod liver oil and megadoses of vitamin C.

Vaccinations should be avoided one week before treatment and two weeks after.

Avoid putting any creams or ointment on the forearm at the site of treatment.

THE COMMONEST CAUSE OF FAILURE IS PARACETAMOL - many cough and cold remedies
contain paracetamol so beware !

Safe painkillers include codeine. If you suffer from headaches, I can supply you with codeine.

Another possible spoiling factor is yeast infection. So patients with gut fermentation syndrome (so-
called candida) should take an antifungal for four days before EPD. I usually use Sporanox 100mgs -
again I can supply directly if your GP won’t prescribe. Sporanox should not be used if there is any
chance of pregnancy.
How Soon Will I Get Better With EPD?
This is the question everybody asks! I give an EPD every two months for the first three doses, then
every three months for 2-3 doses, and then play it by ear. By then most people will have had some
sort of response and be able to judge when they next need a dose of EPD. I am disappointed if
people have not started to improve by 3-4 treatments, but some people take 8-10 before they really
pick up. In this event I don’t charge for my time until the EPD starts working. I like to see clinical

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improvement before the diet is relaxed too much, but if EPD is working as it should, one should end
up feeling well and eating a normal diet. However in practice often people are left with one or two
foods they have to continue to be careful with. For example the antigen in fresh milk and wholemeal
bread is unstable and sometimes the desensitisation does not work for these foods.

Overall about a third of patients with simple allergy problems will have a course of 8 injections and
remain well. About a third need a top up every 6-12 months. However my complex allergy/CFS
patients often need a regular treatment to remain well. This is a bore, but if the price of good health
is an EPD every 4 months, then it is worth it. I have many patients now who I see regularly simply
for such a top up.

Responses to EPD can be fickle and the experienced EPD patient will recognise a good and a bad
treatment. If a treatment has failed completely then I recommend coming back for a top up for which
there is no charge.

Costs - I charge £35 for my time and £50 for a dose of EPD. However some GPs will prescribe the
vaccine, in which case you just pay for my time and the prescription charge (£6.20). Some Health
Authorities pay for my time, in which case there is no cost!

References
1. McEwen, L.M., Ganderton, M.A., Wilson, C.W.M., Black, J.H.D., Hyaluronidase in the treatment of allergy,
Brit. Med. J. (1967) 2: 507-508.
2. McEwen L.M. Effects of sugars and diols on enzyme potentiated hyposensitisation. J. Physiol. 1972. 230: 65-66.
3. McEwen L.M., Starr M.S. Enzyme Potentiated Hyposensitisation I, Int. Arch Allergy. 1972. 42: 152-158.
β glucuronidase and hyaluronidase was used to potentiate the hyposensitising effect of injected antigen into
laboratory animals. Guinea pigs were injected with egg albumin, rats and mice with horse serum and all showed
a hyposensitising effect following β glucuronidase and hyaluronidase pre-treatment.
4. McEwen L.M. Enzyme Potentiated Hyposensitisation II, Annals of Allergy 1973. 31: 79-83.
In mice sensitised to horse serum, β glucuronidase prevents the increased sensitivity which results from a second
dose of antigen. β glucuronidase loses this activity with age or in the presence of gelatin. In both cases glucose
will restore the immunological blocking activity of the enzyme. These results give a reason for the previous
variability expressed using different samples of enzyme in earlier experiments. As well as glucose, glucosamine
and N-acetyl amino sugars have a similar effect.
5. McEwen L.M., Mary Nicholson, Kitchen I, Sheila White: Enzyme Potentiated Hyposensitisation III: Control by
sugars and diols of the immunological effect of β glucuronidase in mice and patients with hay fever. Annals of
Allergy. 1973. 31: 543-550.
The ability of β glucuronidase and a small dose of antigen to modify the anaphylactic reaction of previously
sensitised mice has been further investigated. A 1-3 diol structure appears to be most effective in controlling the
hyposensitising effect of the enzyme, although some concentrations have the opposite effect of hypersensitisation.
The dose response curve is W shaped. A clinical trial on hay fever patients confirms that the results for the diol in
mice are clinically relevant.
6. McEwen L.M., Mary Nicholson, Kitchen I., O'Gorman J., Sheila White: Enzyme Potentiated Desensitisation IV.
Effects of protamine on the immunological behavior of β glucuronidase in mice and patients with hay fever.
Annals of Allergy 1975. 34: 290-295.
Using mice pinnal anaphylaxis, the addition of protamine sulphate to the β glucuronidase/diol mixture displaced
the dose response curve, with less diol being required to achieve the same immunological effect. Hay fever
patients also produced similar results. It is suggested that the protamine helps to stabilise the enzyme mixture,

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minimising the effect of contaminant proteins.
7. J.W. Hadden, R.G. Coffey, E.M. Hadden, E. Lopez-Corrales and G.H. Sunshine: Effects of Levamisole and
Imidazole on Lymphocyte Proliferation and Cyclic Nucleotide Levels
8. McEwen L.M: Enzyme Potentiated Hyposensitisation V: Five case reports of patients with acute food allergy.
Annals of Allergy 1975. 35: 98-103.
Case reports of five patients successfully hyposensitised to foods including one lady highly sensitive to eggs.
Other cases were sensitive to eggs, milk, fruit and nuts.
9. McEwen L.M. Hyposensitisation. In:Brostoff J and Challacombe SJ, Eds Food allergy and intolerance.
London; Bailliere Tindall, 1987. 985-994.
10. Fell P., Brostoff J. A single dose desensitisation for summer hayfever. Results of a double- blind study
– 1988. Eur. I. Clin. Pharmacol. (1990) 38; 77-79.
11. Egger J., Stolla A, McEwen L.M. Controlled trial of hyposensitisation in children with food induced hyperkinetic
syndrome. Lancet (1992) 339; 1150-1153.
12. Longo G., Poli F. Bertoli G. Efficacia clinica di un nuovo trattamento iposensibilizzante, EPD (Enzyme
potentiated desensitisation) nella terapia della pollinosi. Riforma Med. (1992) 107; 171-176.
13. Astarita C., Scala G., sproviero S., Franzese A. A double blind placebo controlled trial of enzyme potentiated
desensitisation in the treatment of pollenosis. J. Invest. Allergol. Clin Immunol., (1996); 6(4):248-255.
14. AngeliniG., Curatoli G., D’Argento V., Vena G.A. Pollinosi: Una nuova metodica di immunoterapia. Medit. J.
Surg Med (1993), 253-256.
15. Cantani A., Monteleone M.A., Ragno V., Lucenti P., Buscino L. Enzyme potentiated desensitisation in children
with asthma and mite allergy; A double blind study. J. Invest. Allergol. Clin. Immunol., (1996); 6(4); 120, 270-
276.
16. Ippoliti F., Ragno V., Del Nero A., McEwen L., McEwen H.C., Businco L. Effect of preseasonal enzyme
potentiated desensitisation (EPD) on plasma IL-6 and IL-10 of grass pollen-sensitive asthmatic children. Allergie
et Immunologie. (1997); 29(5); 120, 123-125.
17. Egger J., Stolla A., McEwen L.M. Controlled trial of hyposensitisation in children with food-induced
migraine. Cephalagia, (1993); 13, (suppl.13); 216.

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FIFTH STAGE: THE WEIRD AND WONDERFUL TREATMENTS

Healing with Seka Nikolic (June 1994) (addresses/price updated May 2002)
I am always looking for new treatments for any illness, but particularly my CFSs with whom I have
the most difficulty. I usually find I can clear up the "peripheral symptoms" such as irritable bowel,
muscle aches etc, but patients are often left with the "core symptoms" of fatigue, malaise and "brain
fag". There is some evidence from SPET scans to suggest that these symptoms are due to poor blood
circulation to the brain.

I have read abut Seka's work (she is from Sarajevo) and one of my patients has been substantially
helped by her. Since I was to visit London, I telephoned Seka (pronounced 'sec' as in 'second') and
she was kind enough to meet me and explain her work. I also had a long discussion with Gill Jacobs,
Assistant Editor ME Action, who is currently writing a book about Seka's work.

Seka has treated over 1900 patients with CFS and tells me that 90% do well. However what is
particularly interesting to me, is that the very symptoms that she is best at treating (brain fag, fatigue,
malaise) are the ones that remain in my "failures". Seka tells me that her talent has been inherited
from her mother who was also a healer. Her brother also shares this talent but his "frequencies" are
not perfectly suited to treat CFSs and he sees most success with other illnesses.

Seka uses her hands and concentrates on the spinal cord, brain stem and central nervous system to
get results (called Bio-Energy treatment). She can detect blockages of energy which she can free.
Patients start to improve after a few treatments and are often substantially better after the first 7
treatments. SPET scanning has shown an increase in blood flow after treatment compared to before.

Seka finds that patients are unable to respond to her treatment if they are on antidepressants and/or
tranquillisers (sleeping tablets), so these should be slowly withdrawn well before attending. Her work
is done in conjunction with Mr Alf Riggs, who visits the patient's home and checks it for geopathic
stress and electromagnetic pollution.

Seka works from the Tailesh Centre of Oriental Medicine, 7 New Court Street, London NW8 7AA,
tel: 0207 722 3939 (in afternoons) and The Hale Clinic, Park Crescent (just off the Marylebone
Road), London, tel. 0207 637 3377 (in mornings), website address www.sekanikolic.com: . She
charges £75 for a session. New patients need 7 consecutive sessions initially (Mon to Fri 1st week,
Mon Tue 2nd week) and possibly "top up" sessions later. Although she has a long waiting list, you
can ask for cancellations if you are prepared to go "stand-by".

I would very much like to see some of my patients visit Seka. If you do decide to go, please let me
know so that I can write a referral letter.
For further information - see the article written by Gill Jacobs in Interaction 15, Spring 1994.

Guaifenesin
Dr R Paul St Amand has postulated that some of the symptoms of chronic fatigue syndrome may be
due to abnormal retention of phosphates. He gives lots of possible explanations for why this may be
the case, which can be seen on his website: www.fibromyalgiatreatment.com - but he postulates that
excessive retention of phosphate interferes with production of mitochondrial ATP. This fits in very
well with how I see chronic fatigue syndrome, which is as a failure of energy supply to individual
cells.

Amand treats these patients with Guaifenesin. He believes it works by mobilising inorganic
phosphate so it passes out in the urine and indeed urine samples of patients started on Guaifenesin

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show large increases in the excretion of phosphate. This mobilisation of phosphate may initially
cause worsening of symptoms and so he recommends starting on low doses and building up
gradually. Analysis of 264 patients showed improvement at different levels of treatment.

Twenty percent of patients improved on 300mg twice daily.


Fifty percent improved on 600mg twice daily.
Twenty percent improved at 900mg twice daily.

Ten percent required 2400mg Guaifenesin or more.

Guaifenesin does appear to be extremely safe, has no listed side effects and is widely used as a cough
linctus for children. Rarely patients get slight nausea, hyperacidity or sometimes rash. The cost of
the Guaifenesin will be £11.00 per 100 (400mg tabs).

Initially treatment sometimes makes symptoms worse, as does increasing the dose. Amand reckons
that regression with Guaifenesin occurs at the rate of about one year for every two months of
treatment. Improvement is sustained initially for a few hours, later for days and eventually for weeks
at a time and duration of the illness and responsiveness to medication determines recovery times and
dosage.

I have tried this treatment for several patients and so far have not been at all impressed by results!

Sleep Apnoea - when you stop breathing during sleep


Sleep apnoea is a well recognised cause of fatigue. There are two types.
Obstructive apnoea when the airway blocks off during sleep because the soft palate at the back of the
throat flops down. This almost always causes snoring and needs the attention of an ENT specialist.
Central apnoea occurs when the body “forgets” to breath. This is more difficult to treat. However it
is often caused by allergy or toxic stress and so the name of the game is to try to find the cause.

Treatment Of Sleep Apnoea


Some patients have sleep apnoea because of food intolerance. The commonest foods are wheat and
dairy products. However, if this does not correctly "reset" the respiratory centre then other things
can be tried. The first is low dose aminophyline which is a mild respiratory stimulant. Too much
causes sleeplessness. She suggests using Slo-phyllin 60mgs at night, 56 caps @ £1.96, on
prescription. Another possibility for obstructive sleep apnoea is low dose amitriptyline 5mgs, which
improves the muscle tone of the airways and helps prevent the airways collapsing.

Geopathic Stress
Natural radiation from the Earth is focused by geology and underground water to create "hot spots"
of radiation which can cause illness including cancer and ME. Such hot spots can be identified by
dowsing and avoided or diverted. Alf Riggs visits the home and charges £80 plus his travel expenses,
tel: 01233 620 036, website: www.alfredriggs.com Some of my patients have seen marked
improvement following a visit from Alf Riggs.

High Dose Evening Primrose Oil


Dr Les Simpson from New Zealand has done work showing that red cells in CFS patients are stiff.
Red cells are wider than the smallest blood vessels they pass through and so need to twist and distort
to pass through. Simpson proposes these stiff cells get stuck, block the blood and oxygen supply and
this accounts for many of the symptoms. He recommends essential fatty acids (EFAs) to soften the
red cell membrane, hence my recommendation for Essential Fatty Acids. A few patients will respond

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to high dose EFAs - say 8 x 40mg, or 4 x 80mg capsules daily, but it is an expensive treatment. Try
this for 3 weeks.

Chronic infections can present with fatigue


This should have been tackled at the diagnostic stage, but often localising symptoms present late. For
example I recently had a patients whose CFS suddenly improved when she had her gall bladder
removed. It was not until she developed pain in her right side that anybody realised she had a gall
bladder problem. Other infections which may present late include dental root infections, helicobacter
pylori (ulcers and hyperacidity), pelvic inflammatory disease, prostatitis, syphilis, hepatitis etc

Many CFS patient who are now having tests done privately are finding that they are infected with
bacteria from the Borrelia species that cause borreliosis or Lyme disease. The disease was first
recognised in the USA in 1975, when an outbreak occurred in Lyme, Connecticut. The Borrelia
bacteria were only discovered in 1982.

The symptoms of borreliosis/Lyme can be the same as CFS, e.g.: painful joints and muscles, brain
fog, memory problems, headaches, flu-like neurological symptoms, stiff neck, numbness, extreme
fatigue, sleep problems, noise or light sensitivity and many more. Not everyone gets all of the
symptoms. I believe there are several antibiotic regimes for treating Lyme disease. I have been using
the protocol developed by Dr Jadin. One of my very clever patients has produced an excellent
overview of the subject and if you would like a copy (“Carols’s version”), please email me and I will
send it!

However the fundamental problem is that the diagnosis is unreliable and the treatment is unreliable!

Alternative Therapies such as homoeopathy, herbal medicine, acupuncture, reflexology,


aromatherapy, osteopathy, etc. Many of these therapies help many patients. However, each therapy is
just a tool and only as good as the therapist. I can wield a knife and fork, but that does not make me
a heart surgeon. Try to get personal recommendations.

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PART THREE - ADDITIONAL INFORMATION
Treatments Which Are Not Worth Trying

Graded exercise – this is positively harmful when CFS is active. I find it quite extraordinary that so
many doctors seem to advocate this as a treatment. It is as if they are unable to distinguish between
CFS and lack of fitness! Let’s face it, if graded exercise worked then the diagnosis could not possibly
be CFS. The only possible explanation I can think of as to why this has stuck in the medical folklore
is that after a physician has recommended this to the CFS patient, the latter never bothers to attend
again for useless advice. The doctor then believes he has cured the patient because they don’t come
back. Has anybody else got any better explanation?

Cognitive behaviour therapy


The idea behind this is that the CFS patient does not exercise because he is afraid to because it
makes him ill. CBT is all about getting round this fear.

The trouble is that the patient is right – he is fearful of exercise because it really does make him ill!
CBT might help the patient who is recovered from the acute phase of CFS, but on the law of
averages it is far more likely to make patients worse. Patients can tolerate so much CBT because
they do the exercises at the expense of other activities, not in addition to and this makes the results
of trials look impressive. CBT should not be done until all the underlying physical causes of CFS
have beenidentified and corrected.

Cold water therapy. This was advocated as a treatment for fatigue by Kakkar. It probably works
because it gives the adrenal glands a huge “kick”. However if the adrenal glands are not working
properly, as in CFS, then the patient feels awful. I don’t recommend cold baths.

Amino acids. I tried these after reading a paper about amino acid deficiencies in CFS. The tests are
expensive, the amino acids expensive and the results very disappointing.

Enada. This sounded like the perfect treatment. I read about it in Autumn of 1998 and faxed the
author straight away. No reply. Six months later it was launched with widespread publicity. Many of
my patients tried it but only 2 reported slight improvement. If Enada was all it was made up to be,
then it would have sold itself through personal recommendation. Actually I now know Enada is the
equivalent of high dose NAD – ie it is part of the correction of mitochondrial dysfunction.

Cocktails of Low Dose Antidepressants and Treatment of CFS


At the British Society for Allergy, Environmental and Nutritional Medicine meeting in April 1998, Dr
David Smith presented his views on the treatment of CFS using cocktails of low dose
antidepressants. His theory is that CFS patients have low levels of neurotransmitters across the
board, namely acetylcholine, noradrenaline, adrenaline, dopamine, GABA, serotonin and probably
others. It is this which causes the multiplicity of symptoms including fatigue. He has concluded from
his studies and his experience with patients that the fatigue in CFS is central - that is to say the cause
is within the brain. These abnormalities are within the mid-brain, thalamus and hypothalamus and are
neurological in origin.

I tried these cocktails for several patients but they just developed the side effects that I see in most of
my patients with any one antidepressant. I was not impressed by this approach and would not
particularly recommend this line.

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Fludrocortisone. The idea here (Dr David Bell) was that the fatigue in CFS is caused by low
circulating blood volume and low blood pressure. He certainly demonstrated that this was the case
and is probably due to autonomic disturbance. The question is what can one do about it? In theory
by using a mineralocorticoid blood volume could be increased. In practice I found that the
fludrocortisone simply caused swollen ankles and the blood pressure was unchanged.

Heparin by injection. Work by Dr David Berg suggests CFS may be caused by being in a state of
hypercoaguability – this means CFSs get tiny clots in their capillaries which impair blood supply. This
would certainly explain the multiplicity of symptoms in CFS and theoretically could be treated by
heparin injections. I’ve tried these in 4 patients with no success. Since then a study by Dr Vance
Spence has shown no evidence of hypercoaguability in CFS.

TOXIC CAUSES OF CFS: Organophosphate Poisoning, Silicone, Carbon


Monoxide, Mercury and Others?
Recognising The Problem and Typical Symptoms
When I first started treating patients with CFS, the cause was either viral or “I don’t know”. I now
realise that many of the “I don’t knows” were cases of poisoning either to organophosphates,
silicone, carbon monoxide, sick building syndrome (formaldehyde, volatile organic compounds etc)
and so on. Furthermore I now suspect that many of those patients with post viral CFS actually were
poisoned by some chemical which weakened the immune system so that it was unable to cope
adequately with a subsequent viral infection. The sort of activities which result in pesticide exposure
include:
following sheep dipping,
spraying agricultural chemicals (farming, market gardening)
being sprayed by tractor or helicopter and spray drift (adjacent homes),
insect control “squeeta betas”
contamination of water supplies
working in a chicken farm (fumigation, control of parasites),
working in the sea of factory farmed salmon in Scotland (where chemicals are used to control fish
lice),
repeated head lice treatments,
house fumigations for flea control or bed bugs,
insect control in hot countries with DDT, OPs etc,
control of sand flies (Gulf War Syndrome),
greenhouse fumigations,
working in a research plant centre where chemicals were weekly used to prevent cross
contamination,
‘A’ level student doing a biology project with pesticides,
carpet factory where fleeces are washed after sheep have been dipped,
lorry driver delivering OPs to farmers,
Government Inspectors in sheep markets,
dairy farmers daily exposed to OPs for fly control in the milking parlour,
poisoning through exposure to dumped cans of sheep dip,
welders working in a factory which was manufacturing OPs,
timber treatments in houses,
treatment of external parasites in dogs, cats, cows (OP pour ons) and so on,
firefighters poisoned by burning chemicals
formaldehyde leaking from cavity wall insulation
flower industry (lots of chemicals on flowers),
timber treatments and handling treated timbers

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airline pilots exposed to organophosphates used in engine oils (which allow oils to work at high
temperatures)
cabin staff on airplanes using pesticides to prevent inadvertent import of foreign insects
DDT used to treat infestations (possibly misdiagnosed as polio)

There are many other occupations where people are exposed to chemicals, but incidents are often
forgotten.

With silicone I am not just looking for the obvious breast implant or silicone injections, but many
other protheses have biologically active materials. Examples include testicular implants, lens
implants, Norplant contraceptive device (silicone rods), TMJ work, facial contouring, meshes for
hernia repairs etc. In the veterinary world reactions to suture materials are well documented – not so
in the medical world.

With carbon monoxide poisoning I am looking for evidence of illness following a house move, new
(or very old) central heating, condensation suggesting blocked chimneys, free standing gas fires
which do not vent to the outside, odd smells etc.

I always ask about occupational history – chemicals in the work place such as:
building projects,
poultry and egg rearing,
manufacturing industry,
photographic industry
paints,
new carpets,
printing industry,
“sick building syndrome” and so on.

These toxic patients present with a chronic fatigue syndrome and it is largely this which prevents
them from working. However these chemicals are extremely toxic to other parts of the body and may
also cause:

Damage to nerves – Central nervous system (psychological problems, psychiatric, sleep, brain fog
etc) autonomic nervous system (sweating, temperature control, hyperventilation, etc) and peripheral
nervous system (numbness, tingling etc).
Damage to bones – osteoporosis, abnormal bone biopsies, abnormal bone metabolism
Damage to the immune system – allergies, autoimmune disorders and multiple chemical sensitivity
(and of course CFS). Tests often show immune damage.
Damage to the heart – particularly the electrical conduction system producing arrhythmias
Damage to the endocrine system – abnormalities of the hypothalamic-pituitary-adrenal axis, thyroid
damage, sex hormones
Probable damage to the liver
These chemicals are also carcinogenic, teratogenic (damage to the unborn baby), and damage sperm
causing low sperm counts and infertility.

Further information from Pesticide Action Network UK tel 020 7065 0905
Website: www.pan-uk.org

We can now do tests to look for these chemicals. They bioaccumulate in fat and a fat biopsy (which
is much easier to do than a blood test and any GP or nurse can take a sample) can be sent to Biolab
where levels of pesticide and volatile organic compounds can be measured. In addition I can now do

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DNA adducts which looks at how such chemicals and/or heavy metals have stuck to DNA.
The second group of tests which are also proving useful are lymphocyte sensitivity tests where one
can see to what extent white cells are being poisoned by these chemicals. Lymphocyte sensitivity can
be done for most chemicals and tell us how clinically important these toxic stresses are.

The BSEM (British Society for Ecological Medicine, previously BSAENM) has produced a report
on MCS cost £10 with the above topics covered in detail. Order from PO Box 7, Knighton, LD7
1WT or tel 0906 302 0010 premium line 50p per minute.

Treatment of Chemical Poisoning and MCS


Everyone is producing toxins all the time as a part of normal metabolism. One cannot burn food to
produce energy in the body without also creating toxins. The body has evolved an excellent system
which scavenges these free radicals before they cause damage. Furthermore, foods all contain
natural toxicants which have to be dealt with in the gut or the liver by our detox system. However,
modern life has brought an increasing load of toxicants, including pesticide residues, drugs such as
caffeine and alcohol as well as medicinal drugs, volatile organic compounds in the air such as scents
and perfumes, heavy metals and so on – all of which need detoxifying. In order to detoxify we need
vitamins and minerals and therefore it is even more essential that everybody takes nutritional
supplements. One excellent way of detoxing is to get hot. Chemicals which are dumped in fat
literally boil off (since fat is largely under the skin and pass out through the skin), furthermore one
also sweats and again this carries out chemicals in the sweat. Time honoured methods of detoxing
include exercise, saunas, spa therapies, Turkish baths, etc – all activities that make one sweat. This is
a totally desirable state of affairs and everybody should sweat on a regular basis, but of course in
sweating one loses not only toxins and chemicals, but also beneficial minerals. Therefore, it is doubly
important that one rehydrates with clean water which has been fortified with minerals to replace
those that have been lost. After sweating make sure you shower off otherwise toxins deposited on
the skin will just be reabsorbed. Actually the most efficient detox occurs during the first few minutes
of sweating, so many short sweats and often works best.

Detoxing and Treatment of Multiple Chemical Sensitivity (MCS): Reducing the Load
Chemical overload often results in multiple chemical sensitivity, but may manifest in other ways such
as neurological disease (Parkinson’s, multiple sclerosis, dementia etc), heart disease (often rhythm
problems) and immune disorders (susceptibility to infections, cancer, CFS). Chemical overload
causes symptoms pertaining to musculo-skeletal, respiratory, gut, urinary systems and skin. The
treatment of both chemical overload and MCS is similar, namely:

1. Reduce chemical exposure ( clean up your environment, eat organic food);


2. Improve your ability to detoxify chemicals by taking nutritional supplements (vitamins, minerals,
essential fatty acids – see my Nutritional Supplements handout), high dose B12 and magnesium, and
eating a high protein diet (amino acids are used to make fat soluble compounds water soluble so they
can be excreted – see my Diet for CFS handout);
3. Desensitise using EPD or neutralisation;
4. Reduce the load of chemicals already accumulated in the body – see below. This also improves the
MCS suggesting that many sufferers are reacting allergically to chemicals constantly present in their
bodies.

This handout is about reducing the load of chemicals and is based on a paper from the Journal of
Nutritional and Environmental Medicine (1996) 6, 141-148 by Professor William Rea. He studied
210 patients with chemical sensitivity who had not improved with environmental control. With his
detox regime he improved symptom scores in 86% with the commonest symptoms being fatigue,
headache, foggy brain and poor balance. His regime required nutritional supplements (similar to my

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standard regime) but 2-8 grams daily of vitamin C.
Then patients were made to sweat either through exercise (5-60mins), dry heat sauna (75 mins) or
both in 2-3 sessions daily. On average patients lost 1.1lb in weight per day.
Blood supply to skin and fat was increased using vitamin B3 as niacin, up to 3,000mgs (or whatever
the patient could tolerate – niacin makes you flush).
Body massage to physically mobilise chemicals from fat. On average patients received 45 minutes
massage daily (lovely!) in 2-3 sessions. Interestingly, this often resulted in the sudden release of
odour when a tight muscle was massaged!
2-4 litres of spring water drunk daily to flush out toxins and replace the fluid lost in sweat.
Length of treatment varied from 10 to 150 days, with an average of 26 days.
After this intensive regime was done, patients continued to improve doing modified regimes at home
3 times weekly.
Blood levels of toxic chemicals declined in 63%. (Actually, the results would have been much better
if fat biopsies had been done since the levels in fat are 1,000 times higher than in blood).
On average patients lost 4.7lbs of fat.

Interestingly the patients most likely to have chemical overload were those who were poor sweaters!
Progress could also be monitored by testing for balance – patients were asked to stand on their toes
with their arms outstretched and shut their eyes – for 57% their ability to do this improved with the
program. However, nearly all the patients (95%) had an initial worsening of their symptoms because
as chemicals were mobilised out of their fat into the blood stream this created toxic levels in the
blood to which the patients reacted. Other common problems induced by detoxing were: increased
liver enzymes (presumably toxins poisoning the liver – it might be sensible to take milk thistle),
muscular aches, tummy symptoms (bloating, gas, diarrhoea, nausea) and cardiovascular (oedema,
tachycardia). Two patients developed hyperthermia – both knew they had poor temperature control
since severe viral infections in childhood.

So this regime clearly works, but we have no such unit in UK and so we have to do our best with
what we have got! The above regime was necessarily intense because this was an in patient unit, but
patients continued to do a modified regime at home and continued to improve. I would suggest the
following regime done as often as you can, but it may take longer to get results.

A Suggested Regime
1. Take my usual regime of nutritional supplements (multivit, EFAs, vit C and MMMs and D).
2. Drink at least 2 litres of mineral water daily
3. Take vitamin C to bowel tolerance – up to 8 grams daily (too much vitamin C gives you
diarrhoea). Also milk thistle (silymarin 400mgs daily) to protect the liver.
4. Eat a high protein diet
5. Get yourself to sweat somehow! The more difficult this is, the more severe your problem! I
suggest firstly take a dose of niacin – this causes flushing and you may need to experiment with the
dose to get result – start with 50mgs and build up to 1,000mgs just before a session or whatever you
can tolerate. Put on 2-3 layers of cotton clothes (free from chemicals – no smelly wash powders or
soaps), then an impervious layer such as waterproof jacket and leggings. Then warm layers on top of
this. Then exercise (if you can) until the cotton clothes under the waterproof layer are soaked in
sweat, then wash off. If possible have a massage. Change into fresh clothes.

If you are not well enough to exercise, heat up first either in a hot (environmentally clean) room in a
very hot (clean water) bath, or use hot water bottles to heat you up, then take niacin, then get into
the sweat suit in a hot room. But do be careful! Lie down because the heating up will make you feel
faint. As an added bonus put some minerals such as Epsom salts in the bath to improve detox. The
other possibility is to use a sauna. The problem here is that many saunas have smells attached (such

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as pine resin) and many people with MCS will not tolerate this.
Expect to get worse initially. 95% of Prof Rea’s patients did, so see this as a good sign – this is
because toxins are being mobilised from fat into the blood stream causing symptoms. You may have
to adjust the severity of your regime to allow for this starting off very gently with gentle sweats for
short times building up to hotter and longer sweats.

6. As you sweat, take extra salt in your diet. In addition to the MMMs, use one quarter of a teaspoon
of sea salt on food. When you sweat you get rid of not just the bad toxins but the good minerals as
well. By using MMM to rehydrate you sweat out good and bad and replace with good.

It is quite easy to do a fat biopsy to monitor progress and indeed the few patients who I have had so
far who have done these sweating regimes have substantially reduced their chemical load and
improved clinically. It is interesting that the levels of chemicals in fat are measured in mg per
kilogram of fat. This is the sort of level one would find in blood if one were using a drug such as an
antibiotic. This indicates how loaded up humans are generally! Morticians have noticed in recent
years that dead bodies do not decay as fast as they used to because they are already pickled with
chemicals! Furthermore if I took any human and strung them up in Smithfield meat market, their
flesh would be condemmed as unfit for human consumption because of the chemical load.

7. As part of the detoxification I also recommend removing mercury fillings. There is now excellent
evidence linking mercury in children with autism and in adults with Alzheimers disease and kidney
failure.

CHRONIC ORGANOPHOSPHATE POISONING Feb 2002

Symptoms of OP Poisoning
Different people have different symptoms of OP poisoning. Symptoms depend partly on how much
OP they have been exposed to, whether they have had single massive exposure, or chronic sub-lethal
exposure, whether it has been combined with other chemicals and OPs and how good their body is a
coping with toxic chemicals. Symptoms divide into the following categories:

No obvious symptoms at all


A Government sponsored study at the Institute of Occupational Medicine of farmers who regularly
handled OPs but who were complaining of no symptoms showed that they suffered from mild brain
damage. Their ability to think clearly and problem solve was impaired.

Sheep dip ‘flu (mild acute poisoning)


This is a ‘flu-like illness which follows exposure to OPs. Sometimes the farmer just has a bit of a
headache, feels unusually tired or finds he can’t think clearly. This may just last a few hours to a few
days and the sufferer recovers completely. Most sufferers do not realise that they have been poisoned
and put any symptoms down to a hard day’s work. It can occur after dipping, but some farmers will
get symptoms after the slightest exposure such as visiting markets and inhaling OP fumes from
fleeces.

Acute Organophosphate poisoning


This is the syndrome recognised by doctors and Poisons Units. Symptoms occur within 24 hours of
exposure and include collapse, breathing problems, sweating, diarrhoea, vomiting, excessive
salivation, heart dysrhythmias, extreme anxiety etc. Treatment is with atropine. You have to have a
large dose of OP to have this effect (eg drink some of the dip!) and so this syndrome is rarely seen.

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Intermediate Syndrome
This occurs 1-3 weeks after exposure characterised by weakness of shoulder, neck and upper leg
muscles. It is usually undiagnosed because it goes unrecognised.

Long term chronic effects


These symptoms develop in some susceptible individuals. They can either occur following a single
massive exposure, or after several years of regular sub-lethal exposure to OPs. These symptoms are:

1. Symptoms of chronic fatigue syndrome:


Severe, debilitating fatigue which is physical and mental.
- physical – no stamina, loss of muscular strength (episodic blurred vision), sudden “hitting a
wall”, has to rest regularly and pace all activity
- mental – poor short term memory, unable to learn new things, poor concentration, speech
difficulty with poor word finding. Long term memory usually fine.
Malaise – sufferers feel ill, “hung over”, “poisoned”.
Muscle aching – often widespread, flitting from one group of muscles or joints to another, often
requiring painkillers; degeneration of handwriting.
Drug intolerance (such as alcohol, antidepressants)
Sleep disturbance
Hormonal disturbances

2. Multiple chemical sensitivity. Sufferers


a) become more sensitive to OPs, which means that they get bigger reactions with smaller
doses.
b) become sensitive to other chemicals. This is called a "spreading phenomenon" and
classically these people start to react to many other chemicals such as diesel fumes, perfumes,
cigarette smoke, alcohol and so on.
c) Develop an exquisite sense of smell – they can smell chemicals long before
anybody else – they are true “canaries”

3. Personality change - destabilisation of mood (mood swings)


- increased tearfulness, irritability and aggression
- impulsive suicidal thoughts
- rage
An extreme version of these symptoms results in psychiatric disorders including depression and
psychosis.

Symptoms which may arise as a combined effect of the above problems include:
Chest pain,
Shortness of breath
Muscle twitching or cramp
Irritable bowel syndrome (abdominal pain, bloating, diarrhoea/constipation etc)
Sweating
Poor balance and dizzy spells
Numb patches, clumsiness
Tendency to pick up infections
Many other symptoms

OPs also accelerate the normal ageing process so that diseases which one might expect in the
eighties one sees in the fifties and sixties. These diseases include:
Degenerative conditions such as Parkinson’s disease, osteoporosis, heart disease and

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dementia.
Genetic and DNA damage causing birth defects and cancer
Immune disruption - this can cause allergies (to foods, inhalants and chemicals), tendency to
acquire infections and difficulty getting rid of infections, autoimmunity.

Making a diagnosis of OP poisoning


At the moment there is no single test which will diagnose OP poisoning. This is because the OPs get
into the body, do damage, and are then fairly quickly excreted. By the time the farmer gets to see a
doctor, the OPs are gone, and only the damage remains.

Organophosphates (OPs) are extremely toxic chemicals used in farming practice in sub-lethal doses.
Every bodily system can be adversely affected by OPs, therefore sufferers present with a multiplicity
of symptoms. Any one of these symptoms can be ignored or coped with. It is when they come
together and are so persistent, that sufferers present to their GPs.

When patients come, they will not arrive with a list of all their symptoms. Sufferers will only tell me
about the symptoms which they believe might be serious. Many sufferers present with chest pain or
headaches suspecting heart problems or a brain tumour. They have to be asked specifically for details
of other symptoms, or the diagnosis will be missed. OP poisoning is a clinical diagnosis made on the
basis of past medical history, symptoms, signs and investigations.

Past Medical History


Often there is no serious illness in the past. However when asked, many sufferers will give a history
of sheep dippers ‘flu. After dipping sheep they often have an illness which lasts a few days during
which they feel completely wiped out, ill, ‘flu like, often with headaches or muscle aches, sometimes
chest pains and nausea. This is often forgotten because it just lasts a day or two. Some sufferers get
neurological symptoms such as cramps, weakness of muscles, numbness and tingling and loss of
balance for a few days to a week or two after dipping (so called intermediate syndrome), but this is
often forgotten and the relationship to dipping unnoticed.

Sheep dip ‘flu is a milder version of acute organophosphate poisoning.

Symptoms
Se above

Clinical signs
Usually there are no clinical signs of disease and the sufferer looks well. Indeed his looks belie his feelings.
These patients feel terrible but look well. One has to rely on tests to support the diagnosis. It is a combination of
the clinical history plus positive tests which make the diagnosis.

Laboratory Investigations
OPs get into the body, cause damage and are then excreted. Unless one is within a few weeks of
exposure, it is pointless doing tests to measure OP levels or cholinesterase (the enzyme inhibited by
OPs) levels. Medical tests can only find the damage to the body. This damage to the body is
widespread and subtle – sensitive tests have to be done, many of which are not routinely available.
So many sufferers get the standard “work up” of medical tests which are either inappropriate, or
overlook minor abnormalities. For example:
Full blood count – usually normal – (there may be a low white cell count)
Urea and electrolytes – usually normal
Liver function tests – usually normal. There may be slightly raised liver enzymes (often ignored) or a
slightly raised bilirubin, suggesting Gilbert’s syndrome.

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Hormone tests – usually interpreted as normal, but actually show low normal levels
X-rays – all normal
ECGs – usually normal
Nerve conduction studies of the motor and sensory nerves – usually normal. Abnormalities may be
found if tests are done within 2 years of the most recent exposure to OPs.
MRI scan of the brain - normal

Most OP sufferers get this standard battery of tests and are told there is nothing wrong with them.
However, there are abnormalities which would be picked up by the following tests:

Fat biopsy for pesticides – this can pick up OPs even when exposures are several years previously

Immune function tests – most of these are research only tests, but, if available, look for low levels of
natural killer cells, low levels of B cells, abnormal T suppressor/helper lymphocyte ratios, raised C
reactive protein and hypogammaglobulinaemia. ANCA, TNF and interleukin 6 may also be
abnormal.

Sensitive tests of liver function (including glutathione S transferase, 5 nucleotidase, RBC glutathione,
urinary D glucaric acid), and tests of the liver’s ability to detoxify (caffeine, paracetamol loading) –
often abnormal Standard Detoxification Profile and Toxic effects screen.

Hormonal studies suggest a suppression of the pituitary gland with borderline underactivity of the
thyroid (hypothyroidism), mild Addison’s disease (tested for by doing adrenocortex stress profile –
salivary cortisol and DHEA levels over 24 hours), inappropriate ADH secretion, poor melatonin
levels resulting in sleep problems, low levels of sex hormones etc. The thyroid abnormality is
interesting classically with low TSH and low T4 (in the lowest 20% of the “normal” range).
Thyroxine can be very helpful.

Osteoporosis – bone density scan at the wrist, hip and spine is mandatory. All farmers with significant
exposure to OPs should have this investigations. Urine tests may show abnormal levels of
metabolites of bone namely deoxypyridinoline (Dpd) and N-telopeptides (NTx) indicating faulty
bone metabolism.

Psychometric testing – this often shows severe impairment of memory, information processing,
learning, concentration etc. This is not easy to get on the NHS but should be demanded – available
via consultant neurologists. It should be possible for your GP to refer you to a neurologist because
you are suspected to be suffering from a “sub-cortical dementia”. The neurologist has to be asked to
refer you on for psychometric testing. This may take several hours to do (if it doesn’t you are not
getting the right test!). These tests are an objective assessment of brain function and can be very
helpful for getting street credibility (with your GP – there is often a dramatic change of attitude when
it is discovered there is something really the matter!) and for getting benefits (as you are suffering
from a pre-senile dementia).

Nerve conduction studies of the autonomic nervous system – presently only done by Drs Jamal and
Julu. The autonomic nervous system controls automatic functions such as temperature, sweating,
blood pressure, heart and respiratory rate, gut function etc. Abnormalities are commonly found in OP
poisoned sufferers and are persistent.

Brain scans to demonstrate function (such as SPECT scanning) may show poor perfusion of
particular areas of the brain. Most of this work has been done on Gulf War veterans who were
similarly poisoned.

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Trace elements levels – often deficiencies of magnesium and selenium found.
Vitamin deficiencies – particularly of the B vitamins – in fact, this is so common that I do not bother
to do tests, but use multivitamins routinely.
Antibodies to brain proteins (cytoskeletal antibodies) sometimes raised (test not available in UK).
Conduction abnormalities in the heart – arrange 24 hour ECG monitoring for symptoms such as
chest pain or palpitations (needs referral to cardiologist).
Allergy testing – OPs are immune adjuvants and “turn on” allergies. Objective tests for allergies are
unreliable therefore elimination dieting has to be undertaken.

OPs disrupt the immune system. There may be an increase in auto-immune disorders and auto-
antibody screening may pick up abnormalities. I have seen OP poisoned farmers with multiple
sclerosis, scleroderma, positive anticardiolipin antibodies, CREST syndrome, Churg Strauss
syndrome.
Visual field abnormalities – most opticians can map visual fields – sometimes holes can be found.
Other neurological diseases such as Parkinson’s are thought to be OP related. Some schools of
thought believe prion disorders such as BSE/CJD may also be related to OP and other pesticide
exposure.
Increased cancer risk in the long term

Treatment – the environmental approach


The priority is to recognise the illness and stop further exposure to OPs and other toxic chemicals.
Not all people are equally susceptible to the toxic effects of OPs – those that get symptoms are more
susceptible and need to be doubly careful to avoid further exposure. Most exposures to chemicals
comes at times outside dipping, including handling of sheep, wool wrapping, market (especially
covered markets), pets with flea collars, fly sprays and for some sensitive people, walking through a
field of sheep that have been dipped or, for a few, eating foods that have been grown with the use of
chemicals.

Fatigue – mental and physical. This has the most severe effects on lifestyle. Most sufferers are
unable to work full-time. Many have to grass-let or sell their farms. I estimate many sufferers are
reduced to 25% or less of their pre-morbid potential. All activities have to be carefully paced as over-
doing things one day will cause a relapse lasting several days.

SEE EARLIER SECTIONS ON TREATMENT OF CFS AND MITOCHONDRIAL


FUNCTION

Multiple chemical sensitivity – the treatment of this is a four pronged approach:


Avoid
Detox by taking micronutirient supplements
Detox with sweating regimes
Desensitise with enzyme potentiated desensitisation or neutralisation
Avoid: sufferers must observe the many rules which apply to patients with chemical sensitivity such
as:
• Make the house a chemically safe place – no new furniture or carpets, no painting, no smelly
cleaning chemicals, no perfumes or scented soaps, no polishes or sprays.
• Avoid gas appliances, cavity wall insulation (formaldehyde), plastic windows. Visitors can be
difficult because they invariably smell of some perfume, wash powder, polish, cigarette smoke or
whatever. All guests have to be trained to avoid these things.
• The car has to be similarly chemically clean. New cars are a disaster for these patients.

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• Public transport is too risky because of inadvertent exposure to perfumes and cigarette smoke.
• Holidays can be a nightmare to arrange, as can staying with other people. Pubs, cinemas, theatre,
shopping centres, offices etc. can cause difficulties.
Hormonal imbalances – corrected by judicious use of low dose, biologically identical hormones
such as T4 (and sometimes T3), low dose cortisol (5-10mgs, equivalent to 1-2mgs prednisolone),
DHEA, melatonin (3mgs nocte for sleep problems), low dose sex hormones where a deficiency is
shown).
Depression – is very common, but sufferers react badly to “normal” doses of antidepressant. I use
small doses of anticholinergics such as amitriptyline 10-20mgs at night. I rarely use SSRIs (Prozac
like drugs)
Sleep disturbance is common – try melatonin, amitriptyline, valerian, etc.
Allergies – very common. I suspect OPs act as immune adjuvants to turn on allergies. Elimination
dieting can be helpful but counter-productive if there are multiple allergies, in which case consider
desensitisation (such as enzyme potentiated desensitisation – my preferred technique)
Osteoporosis – the type of osteoporosis is unknown and no treatment is known to work for certain.
I am experimenting with vitamin D and vitamin K, both essential for normal bone metabolism. Low
DHEA is also a cause of osteoporosis and known to help prevent it. Testosterone is often low in OP
poisoned farmers and replacement will also help the bones.

What can you expect from your GP?


The problem with GPs is that they are not trained to look for toxicological (poisoning) as a cause of
illness. You may be referred to the Poison’s Units (now called Medical Toxicology Units). The
Poison’s units have not made a single diagnosis of chronic organophosphate poisoning in the last ten
years, I suspect because funding for the Poison’s Units comes from the chemical companies. This is
an issue I have written about in the Journal of Nutritional and Environmental Medicine which the
Poison’s Units have failed to refute.

You can expect your GP to do a series of blood tests and tell you there is nothing abnormal and
therefore nothing wrong. The next step might be referral to a neurologist who again will trot out the
party line – chronic OP poisoning does not exist. The next port of call is usually the psychiatrists who
do not have a “toxicological” diagnostic pigeon hole and will squeeze you into the next nearest fit, ie
chronic depression. The treatment of this, namely anti-depressants, will make the poor sufferer
worse, he will refuse to take them and be discharged as an unco-operative patient. The OP afflicted
farmer is left to sort out his life as best as he can and usually ends up with declining health, having to
sell his farm or rent out his fields. His marriage usually founders because he can’t pull his weight. No
wonder that a significant proportion commit suicide.

Fortunately most farmers are intelligent and realise the above state of affairs. But the lack of street
credibility and help from Government Agencies make this illness a social and financial disaster area.

CARBON MONOXIDE POISONING


The symptoms of CO poisoning are the same as CFS namely physical and mental fatigue, weakness,
susceptibility to infections, muscle pain and so on – furthermore they may continue for several years
after the cause has been identified and removed, just like OP poisoning. It has been estimated that 1
in 20 homes with gas heating had been affected in some way by CO poisoning.

Diagnosis of acute CO poisoning can be made by doing a blood test for carboxyhaemoglobin levels.
This has to be done within 3 hours of exposure or nothing will show.

Further information from: CO-Gas Safety, Station Building, The Parade, Claygate, Surrey KT10

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0PB
Tel: 01372 466112/466135 website: www.co-gassafety.co.uk

DENTAL AMALGAM and MERCURY TOXICITY


why you should have your dental amalgams removed
JANUARY 2004

In November 2003 I chaired a Scientific Meeting of the British Society for Allergy Environmental
and Nutritional Medicine at The Royal College of General Practitioners which spent the day
discussing the toxicity of mercury amalgam. Up until that day I had been advising patients to remove
mercury amalgams when the opportunity arose and replace them with white, gold or ceramic fillings.
Since that meeting I have had all my mercury fillings replaced. The evidence presented was so
compelling that I am now advising all my patients to get rid of their mercury fillings as part of any
general work up to almost any health problem, including wishing to live to a ripe old age!

Professor Fritz Lorscheider presented his work over the past ten years. The first question he wanted
answering was whether mercury leaches out from dental amalgam. At room temperature, mercury is a liquid
and in dental amalgam it is not chemically bound into the amalgam, but there as a liquid, albeit a very tough
and stiff liquid. Lorscheider took some sheep, filled their molars with dental amalgam which was radioactively
labeled and four months later scanned the sheep to discover the mercury had deposited in their bones, kidneys
and in the brain. The next question was: what does this mercury do in the brain?

It just so happened that the adjacent laboratory had set up in vitro experiments so that individual nerve cells
could be seen growing using time lapse photography. For a nerve cell to grow nerves which conduct
electricity, the first step is a cylindrical cytoskeleton which gives the nerve fibre some structure and the delicate
nerve then grows up inside this cytoskeleton. This stiff tube is made up of a protein called tubulin and using
the photography one can actually see the nerve fibre growing. Lorscheider then infused some mercury at a
very tiny concentration, considerably less than would be found in the saliva of a person with mercury
amalgams. At this concentration the growing nerves collapsed because mercury destroyed tubulin so the nerve
fibres no longer had any structure.

The pathology of this is similar to Alzheimer’s disease in which neuro-fibrillary tangles are formed.
Essentially Lorscheider is telling us that mercury causes Alzheimer’s disease. Alzheimer’s is also associated
with aluminum poisoning and indeed aluminum is a very similar metal to mercury in the periodic table of
elements. The main source of aluminium is from antacids, antiperspirants and cooking foil, pots and pans.

The Russians banned the use of mercury amalgam in 1960 because they perceived it then to be very toxic.
There is no Alzheimer’s disease in Russia. A friend of mine in Australia tells me Australian dentists no longer
use mercury amalgam. In California, Sweden and Germany mercury amalgam has been banned. We should
not be using mercury amalgam in U.K.
The early symptoms of mercury poisoning are loss of short term memory, a metallic taste in the mouth (this is
difficult since taste is relative and amalgam is constantly present) and fine tremor. Mercury may also cause
personality changes (like the Mad Hatter from Alice in Wonderland). It is also toxic to the nerves of the heart
and may be a cause of electrical dysrhythmias (palpitations).

There is now overwhelming evidence that mercury poisoning is the cause of autism. All children now receive a
plethora of vaccinations, all of which contain mercury. Lynn Redwood, an American nurse, calculated that her
autistic son received 183micrograms of mercury (thimerosal) during the first year of his life which is
considerably more than the recommended annual dose for adults. The symptoms of autism are almost
identical to the Mad Hatter’s symptoms of mercury intoxication. A study of 400 autistic children published in
New Scientist recently looked at the levels of mercury in the hair of autistic children and showed they had a
much lower level than normal children. This was the opposite of what the researchers were expecting to find,

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until they realized that the autistic children were unable to excrete mercury. This meant that the mercury built
up in their brains to cause neurological symptoms. An ongoing study now, yet to be published, showed that
mercury chelation therapy was superior to any other therapy for treating autistic children.

This certainly squares with my view of other diseases – it is the people who are the slow detoxifiers who are
not good at getting rid of chemicals partly through genetics, poor diet or through poor micronutrient status that
are susceptible to illness. With childhood vaccinations one should be highly selective as to those given and
only use vaccinations which are mercury free. At present this is not possible and there is an urgent need for
mercury free vaccinations to be made generally available.

There was then a discussion about how to remove the fillings. Dr Lorscheider’s view was that if you are
relatively well then just go ahead and get the fillings replaced by your usual dentist. However if you have
symptoms which may be mercury related then you should get your fillings changed by a dentist specialising in
mercury free dentistry. This is because in removing fillings more mercury is released into the body which may
cause acute clinical symptoms.

To find a local mercury free dentist, go to: http://www.amalgam.ukgo.com/Homepage.htm For a


good book on the subject, purchase Mercury Free Dentistry - Menace In The Mouth by Dr. Jack
Levenson

Before, during and after extraction


Good nutrition is highly protective against toxic stress and it is recommended that you improve your
diet (for example doing my chronic fatigue syndrome diet – low allergen, high protein) and take
nutritional supplements (see nutritional supplement handout) for at least two months before
extraction.

Undergoing Extraction
Extracting mercury will inevitably release more mercury into the body. Limit absorption in the gut by
eating charcoal biscuits on the day of extraction – 2 biscuits just before extraction followed by two
every four hours for 24 hours subsequently. Whilst awaiting extraction, take high dose selenium -
400 to 600 mcg daily and vitamin C 4 grams daily. If you have several fillings removed over several
days or weeks, then in between extractions take high dose selenium and vitamin C. A word of
caution: High dose vitamin C stops the local anaesthetic working, so start to take your daily dose of
vit C immediately after the dental work has been finished that day (do not take before the
extraction).

References:

1. Lorscheider, F.L., Vimy, M,J., and Summers, A.O. Mercury exposure from “silver” tooth fillings:
emerging evidence questions a traditional dental paradigm.” FASEB Journal 9:504-508, 1995.
2. Leong, C.C.W., Syed, NLI., and Lorscheider, F.L. Retrograde degeneration of neurite membrane
structural integrity of nerve growth cones following in vitro exposure to mercury. NeuroReport 12:
733-737, 2001.

Gulf War Syndrome


We now know from the epidemiological studies that Gulf War Syndrome is a distinct syndrome caused by a
very particular cocktail of toxins. The nearest group are the sheep dip poisoned farmers. Sufferers are
obviously very ill with very abnormal ATP profiles and cell free DNAs indicating a level of damage
comparable to a patient undergoing chemotherapy for cancer. This results in a severe chronic fatigue syndrome
and an accelerated rate of ageing with increased risk of cancer, neurodegenerative disorders, allergies,
autoimmunity and osteoporosis.

The toxins that soldiers were exposed to include:

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1. A cocktail of vaccinations given before travel and repeated in Riyadh. It is perfectly possible for these to
cause problems because:

a) A large number of vaccines were given – up to 14 in one day.


b) The vaccinations were given over one to two days which could result in a “cocktail” effect. The
synergistic effects of such large cocktails of vaccines has never been studied.
c) Soldiers were very likely to have received vaccinations such as anthrax, which have never undergone
proper clinical trials either for efficacy or for tolerance.
d) All vaccinations contain heavy metals which are used as preservatives and immune adjuvants. The
most popular is thimerosal which is a mercury compound, but increasingly aluminium hydroxide is
being used. It is perfectly possible that so many injections could have resulted in a toxic dose of these
toxic metals.
e) Many soldiers had an acute influenza like reaction to both batches of vaccinations with the second
being worse than the first. These acute influenza like reactions almost certainly are mediated by
cytokines and interferons, suggesting immune reactions and possibly immuno-disruptive effects.

2. As soon as soldiers arrived in Riyadh, they were started on “NAPs” tablets. The drug in NAPs,
pyridostigmine, is an antidote to organophosphate poisoning, but it is toxic in its own right. Indeed in normal
clinical practice, General Practitioners are not allowed to prescribe this drug. Should it ever be given it always
has to be in hospital in a controlled environment where the patient can be carefully observed.

3. Soldiers were very likely to have been exposed to organophosphate chemicals used in chemical warfare. We
suspect this because whilst living in the tented city the alarm for chemical contamination was constantly going
off. This meant that several times a day they would have to put their gas masks on whilst the alarm was
ringing. The Army obviously got fed up with this alarm going off and eventually they told the soldiers that the
alarm was malfunctioning and that they did not need to use their gas masks any more. Again this account is
supported by “similar fact” witness statements.

4. Whilst living under canvas, these tented cities were regularly sprayed with organophosphates in order to
control insects. Anybody living in the area would therefore inevitably have been exposed and indeed it is
perfectly possible that the organophosphates used for spraying were responsible for the chemical exposure
alarm going off regularly.

5. During the length of their stay in Kuwait there was on-going pollution from oil well fires. The soldiers were
constantly exposed to this smoke and indeed veterans have commented that sometimes the day looked like
night during when they could only just see the sun. Smoke from burning oil is, of course, extremely toxic for
many reasons. First of all it is very likely that combustion was incomplete and therefore would have released
polluting gases such as COxs, SOxs and NOxs. These are known irritants to the lung. Secondly, oil well fire
smoke would produce many toxic chemicals with a direct irritant, immuno-disruptive and carcinogenic effect.
Thirdly, fires would have produced a whole range of particulate matter from the very large particles which
would be responsible for the black fog down to very tiny particles of PM 10 or less. This size of particle is not
filtered out by the nose or lungs and would have penetrated deep into the lungs, not only causing lung damage,
but also being picked up in the bloodstream where they could have caused arterial and indeed heart damage.

6. There were bombing raids at night and it is known that these bombs were carrying chemical weapons.

7. There was an incident where the Americans had bombed an Iraqi chemical dump and this produced a large
plume of fire, flame and gas. As a result, all soldiers had to wear chemical warfare suits and gas marks, but
this was only for a few hours. However, the chemical contamination would have persisted for many weeks,
but during this time protective clothing and air masks were not worn. The tanks themselves had no air
conditioning system and the tents in which soldiers bivouacked during the night certainly had no such air
conditioning.

8. Allied tank busting rounds had depleted uranium tips. The reason for this is because depleted uranium is
very dense and this allows missiles to penetrate the armour plating of Iraqi tanks. Soldiers were called upon to
inspect the inside of many of these bombed out tanks, partly for military purposes and partly for souvenir

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collection. Depleted uranium is at its most dangerous when it is vaporised because the very small particle
sizes that arise from such intense explosions mean that they are readily absorbed through the lungs and largely
deposited in bone. Because they are extremely insoluble they are very poorly excreted from the body and
toxicity cannot be judged by, for example, doing urine samples.

9. We cannot exclude the possibility that soldiers were subject to biological warfare. Indeed Professors Nancy
and Garth Nicolson from California have identified the presence of a bacteria, mycoplasma incognito, in many
veterans and have cured them with high dose doxycycline.

Treatment therefore is aimed at:


Treating the chronic fatigue syndrome – ie the standard work up – all that has gone before in this
handout!
Treating the multiple chemical sensitivity which often is present
A good detox regime
Identifying specific problems such as mycoplasma incognito
Addressing the allergy/auto-immune problems
Being aware of the increased risk of cancer and investigating new symptoms actively

CFS Ability Scale


The fatigue in CFS is both mental and physical. For some sufferers, the physical is the greatest
burden and for others, the mental fatigue is most troublesome.
100: No symptoms with exercise. Normal overall activity. Able to work or do house/home work
full time with no difficulty.

90: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level.
Able to work full time without difficulty.

80: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed
for activities requiring exertion only. Able to work full time with difficulty in jobs requiring
exertion.

70: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close
to 90% of expected except for activities requiring exertion. Able to work/do housework full
time with difficulty. Needs to rest in day.

60: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall
functioning 70% to 90%. Unable to work full time in jobs requiring physical labour (including
just standing), but able to work full time in light activity (sitting) if hours flexible.

50: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall
activity level reduced to 70% of expected. Unable to perform strenuous duties, ut able to
perform light duty or desk work 4-5 hours a day, but requires rest periods. Has to rest/sleep
1-2 hours daily.

40: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall
activity level reduced to 50-70% of expected. Able to go out once or twice a week. Unable
to perform strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires
rest periods.

30: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity
level reduced to 50% of expected. Usually confined to house. Unable to perform any

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strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods.

20: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity
30-50% of expected. Unable to leave house except rarely. Confined to bed most of day.
Unable to concentrate for more than 1 hour a day.

10: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the
house. Marked cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

This is the scale I use in conjunction with the mitochondrial function scores to help assess the levels
of disability in CFS.

Osteoporosis – a long term complication of CFS


Updated May 2006
Osteoporosis
Osteoporosis is a modern disease of Western Society. Primitive societies eating stoneage diets do not suffer
from osteoporosis. So the underlying principles for avoiding osteoporosis is that we should mimic
primitive cultures eating stoneage diets. This does not mean you need to run around half naked in a rabbit
skin loin cloth depriving yourself of the pleasures of 21 st Century Western life. We need to cherry pick
from the good things of both civilisations.

To produce strong healthy bones, one needs two essential elements – first of all the stimulus to lay down
bone and secondly the raw materials to do so. It is the old story – if you do not use it, you lose it and
disuse atrophy of bones occurs just like disuse atrophy of muscles. The body has to be metabolically
prudent and will only develop in response to demand. Everybody knows that athletes have to work hard to
develop their muscles and in doing so, they will be applying stresses which protect their bones from
osteoporosis. One reason why astronauts can only spend a small time in space is because as soon as they
become weightless, no forces pass through bone and they develop severe osteoporosis. Putting a patient to
bed has a similar effect. We now know that the mechanism by which this occurs is called the piezo-electric
effect. The forces of gravity through bones create fluctuating electrical charges which stimulate the
formation of new bone. It is these changing forces which appear to be the most powerful stimulus which is
why “rebounding” has long been a popular treatment to prevent osteoporosis – it is fun, fairly effortless
and puts changing gravitational fields through all weight bearing bones. But any form of exercise is going
to be highly beneficial and desirable.

The medical profession would have us believe that the only important constituent of bone is calcium.
Actually bone is made up of many different minerals including, in order of proven importance, magnesium,
calcium, strontium, boron, silicon, selenium, zinc, chromium and maybe others. For its formation it also
requires a whole range of vitamins, essential fatty acids and amino acids. All these nutrients are supplied
liberally by a stoneage diet based on meat, fish, eggs, nuts, seeds and vegetables. Western civilisation now
gets 70% of its calories from four foods, namely grains, dairy, potato and sugar – sugar is already a
refined food, most grains are eaten refined, as are potatoes. The refining process strips out many essential
micronutrients and these are further depleted by storage, cooking, packing and light. In addition to this,
many other substances we consume have a diuretic effect, in particular tea and coffee and alcohol and this
further strips essential micronutrients from the body. There are a great many studies which show that
modern Western diets are markedly deficient in these essential micronutrients. By taking my standard
recommendations for supplements combined with a stoneage diet and exercise will prevent osteoporosis.

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The most important vitamin for protecting against osteoporosis is vitamin D. There are no major food
sources of vitamin D. Levels in milk are low and this may be because of the modern agricultural practice
of keeping cows indoors – they too make vitamin D from sunshine and if they do not get sunshine exposure
then they will not have any vitamin D either. Vitamin D is present in cod liver oil, but one would have to
eat about half a salmon a day in order to get a reasonable dose of vitamin D. Really the only serious
source of vitamin D is from sunshine. Humans evolved in hot climates where the effect of sunshine on the
skin resulted in high levels of circulating vitamin D and this is probably the physiological norm. At present
we are running blood levels of vitamin D which are only about half of the desirable level. The incidence of
osteoporosis increases the further away from the Equator one lives. My personal view is that if you do not
get a daily dose of sunshine (by which I mean 20 minutes exposure to face, arms and chest), then one
should take a vitamin D supplement. There was an interesting study of patients in a residential home with
high dose vitamin D prescribed to prevent hip fractures. Interestingly hip fracture rate was reduced almost
immediately, far too soon for vitamin D to have any impact on bone density. The reason for this was that
vitamin D improved the muscular strength, balance and co-ordination of residents which made them very
much less likely to fall over.

One hour of Mediterranean sunshine would supply about 10,000iu of vitamin D. This occurs through the
action of sunshine on cholesterol in the skin. If the body perceives a deficiency in vitamin D then it
responds by pushing out more cholesterol, so that when the sunshine does come along, vitamin D can be
made more efficiently. Therefore a raised cholesterol may well be one symptom of vitamin D deficiency.
My recommendations are that during the winter months we should routinely be taking 2,000iu of
cholecalciferol daily.

British National Formula contains several preparations of calcium and vitamin D. These preparations are
doomed to failure for two reasons. First of all osteoporosis is not a symptom of calcium deficiency,
actually magnesium is far more important as a trace element in preventing osteoporosis. Giving a calcium
supplement further inhibits absorption of magnesium and is therefore more likely to make the situation
worse. Secondly, the dose of vitamin D in the supplement is inadequate. Most contain 400iu of vitamin D,
this is equivalent to two minutes of Mediterranean sunshine which is totally insufficient to raise plasma
levels of vitamin D. Thirdly, vitamin D is often present as ergocalciferol which is only a quarter of the
physiological effects (so equivalent to about 20 seconds of sunshine!). The reasons for these disastrously
low doses may be to do with normal ranges in the blood. Humans evolved running naked under the African
sun and in Africa serum D3 levels are usually over 100. In this country the normal range is said to be
about 20 –70 and will vary according to the time of year that they are taken. It is likely that people in
northern climes are chronically deficient of D3 and this has resulted in normal ranges being set disastrously
low.

Vitamin K is also protective against osteoporosis, however it is rather expensive. The natural source of
vitamin K is green leafy vegetables – so eat plenty of these! Clinically problem arise in people taking
Warfarin which is a vitamin K blocker – Warfarin puts one at risk of osteoporosis so it is vital to pay
attention to all other departments – (see below).

Dairy products may be rich in calcium, but they contain low levels of magnesium. There is evidence to
suggest that actually magnesium is more important in the prevention of osteoporosis than calcium. The
ratio of calcium to magnesium and dairy products is ten parts to one, whereas our physiological
requirements are for two parts calcium to one part magnesium. Furthermore, these two elements compete
with each other for absorption and so excessive levels of calcium simply further reduce the ability to
absorb magnesium. Primitive people eating a stoneage diet often have no dairy products and they have no
osteoporosis. The standard advice that dairy products will protect against osteoporosis is based on highly
dubious science.

Strontium and Osteoporosis


Strontium tends to accumulate in bone—especially where active remodeling is taking place. In 1959, researchers at the Mayo Clinic
investigated the effect of strontium in 32 individuals suffering from osteoporosis.1

Each patient received 1.7 grams of strontium per day as strontium lactate. Eighty-four percent of the patients reported marked relief of

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bone pain, and the remaining 16 percent experienced moderate improvement. No significant side effects were seen, even with prolonged
(up to three years) administration of strontium. X-rays taken at the beginning and end of the study showed “probable” increased bone
mass in 78 percent of the cases. This is not surprising, considering the symptomatic improvement reported by the patients. Unfortunately,
measurement of bone mass in 1959 was pretty crude, leading the researchers to qualify their interpretation of the X-rays. Sophisticated
tests such as dual photon absorptiometry and CT scanning as used today were not available at the time this study was conducted.

Nevertheless, because of the “strontium scare” of the


1950s, little follow-up was conducted until nearly 30 years
later. In 1986, scientists administered 0.27 percent
strontium to mice in their drinking water. This resulted in an
increased rate of bone formation and decreased rate of
bone resorption.2 In another study, rats given extra
strontium showed increased bone formation and greater
bone density than rats fed a control diet. These reports
suggested that the amount of strontium we ingest may
reduce our risk of developing osteoporosis, and that
strontium may play a role in the prevention of
osteoporosis.7

In 1985, Dr. Stanley C. Skoryna of McGill University in


Montreal conducted a small-scale study that pointed to a
potential role for strontium in the treatment of humans.3
Three men and three women with osteoporosis were each
given 600 to 700 mg/day of strontium in the form of
strontium carbonate. Bone biopsies were taken in each
patient at the iliac crest (hip bone), before and after six
months of treatment with strontium. Biopsy samples
showed a 172 percent increase in the rate of bone
formation after strontium therapy, with no change in bone
resorption. The patients receiving strontium remarked that
the pains in their bones had diminished and their ability to
move around had improved.

Recently, interest in strontium has been rekindled by a


number of studies using the strontium salt of ranelic acid
(strontium ranelate). A large multi-center trial known as the
strontium ranelate (SR) for treatment of osteoporosis (STRATOS) trial was designed to investigate the efficacy and safety of different
doses of strontium in the treatment of postmenopausal osteoporosis.4

The study included 353 osteoporotic women with at least one previous vertebral fracture and low scores of lumbar bone density. Patients received
placebo or strontium in doses of 170, 340 or 680 mg/day for two years. The scientists evaluated lumbar and hip bone mineral density (BMD) using
dual-energy X-ray absorptiometry (DXA). They also determined the incidence of new vertebral fractures, as well as several biochemical markers of
bone metabolism. Lumbar BMD increased in a dose-dependent manner as shown in Figure 1.

Also, there was a significant reduction in the number of patients with new vertebral fractures in the second year of the group receiving the 680 mg/day
dose. In the 680 mg/day group, there was also a significant positive change in markers of bone metabolism. The authors concluded that the 680
mg/day dose offered the best combination of efficacy and safety, and stated without equivocation that strontium ranelate therapy increased vertebral
BMD and reduced the incidence of vertebral fractures.

A much larger trial by the same research team included 1,649 osteoporotic postmenopausal women. These subjects received 2 gm/day of strontium
ranelate (providing 680 mg strontium) or placebo for three years.5 Calcium and vitamin D supplements were also given to both groups before and
during the study. In addition to suffering fewer fractures, patients in the strontium group noted a risk reduction of 49 percent in the first year of
treatment and 41 percent during the three-year study period. Patients in the strontium group increased lumbar bone mineral density by an average of
14.4 percent and femoral neck BMD an average of 8.3 percent. The authors concluded that “treatment of postmenopausal osteoporosis with strontium
ranelate leads to early and sustained reductions in the risk of vertebral fractures.”

However, the most important risk factor for osteoporosis is age. With age metabolism becomes less
efficient and therefore there is a greater need for micronutrients. This occurs when appetite and food intake
declines as people become more sedentary. Therefore, it is my view that with advancing age, one should be
taking a good multivitamin, multi-mineral, essential fatty acids and vitamin C and D as a routine dietary
supplement.

With age hormone levels decline and again there is good evidence in the literature which link osteoporosis
with declining levels of anabolic hormones. The best documented are, of course, the sex hormones such as
testosterone, oestrogen and progesterone. The problem with these is that their long term use is associated
with increased risk of cancer and arterial disease. Indeed the latest advice from the Royal College of
Obstetricians & Gynaecologists is that no woman should be taking hormone replacement therapy long term
because of these increased risks. The two other hormones which are important for normal bone metabolism
are DHEA and human growth hormone. The levels of the decline in parallel with increasing age and indeed
may partly account for the aging process. Some schools of thought advocate the routine taking of DHEA
25mg daily after the age of 60. Certainly when I measure salivary DHEA levels in people over this age

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they are consistently low. DHEA in these doses is not associated with any long term risks of malignancy or
arterial disease. Indeed it is possible it may be slightly protective. Exogenous human growth hormone is
too expensive as a routine therapy for osteoporosis, but there are interventions that can be done which
improve endogenous production. Older readers may recall nanny telling them that one hours sleep before
midnight is worth two hours after midnight. She was right. It is during the hours of sleep before midnight
that one gets optimal production of human growth hormone. Production can further be improved by
exercise, particularly isometric exercise such as weights. Furthermore, a diet of low glycaemic index also
improves HgH production and this, of course, is what characterises the primitive stoneage diet.

To Prevent Osteoporosis
• Eat a stoneage diet which avoids dairy products and is based on foods of low glycaemic index
• Take micronutrient supplements including multivitamins, minerals (MMMs), essential fatty acids
and vitamin C
• Get as much sunshine as possible without actually burning (it is the burning that causes skin
damage and increases risk of cancer). On sunless days take a vitamin D supplement
• Take regular exercise to stimulate formation of bone and improve endogenous growth hormone
production
• Get a good night’s sleep on a regular basis aiming for our physiological requirement, namely nine
hours sleep between 9.30pm and 6.30am
• At the age of 60 I shall measure my own DHEA levels (ask for a DHEA single salivary sample test
kit) and maybe supplement with this as well.

To Treat Established Osteoporosis


All of the above plus
Extra vitamin D – to a total of 4,000i.u. daily
Strontium carbonate or chloride 500mgs daily
Measure levels of DHEA (a single salivary measurement gives one a pretty good idea)
Take glucosamine 2 grams daily
Measure thyroid function – both underactive and overactive thyroids can cause osteoporosis.
Get bone density scans done every two years to make sure the regimes is working.

I now make up an arthritis/osteoporosis mix which contains per dose strontium 500mgs, boron 20mgs,
glucosamine 2gms and Devil’s Claw 2gms to take daily – ask for AA – “Arthritis Add-Ons”. This should
be taken in addition to the standard regime of multivits, MMMs, EFAs, vits C and D.

My experience is that the above regimes are almost free from side effects, improve bone density reliably
well and there is no need to take the drugs such as the bone builders which almost invariably make people
feel ghastly!

HELPFUL ORGANISATIONS – SUPPORT FOR PATIENTS AND DOCTORS


Getting Benefits
The benefits worth looking at are:

140
Incapacity benefit – for patients unable to work.
Disability Living Allowance – for extra money to help with disabilities which prevent patients caring
for themselves – this is made up of a care and a mobility component. There is huge variability from
region to region as to who gets and who does not. If you are unreasonably turned down, ask for the
reasons why including a copy of the examining doctors report. Ask for help from Citizens Advice
Bureau, or a solicitor. I can help with preparing you appeal, but there is a charge for reports. Please
phone in and ask Hania (my secretary).

FURTHER INFORMATION AND SUPPORT FOR PATIENTS


Action for ME , 3rd Floor, Canningford House, 38 Victoria Street, Bristol BS1 6BY
Tel 0845 123 280
E mail admin@afme.org.uk website: www.afme.org.uk

This is the only national organisation worth being a member of – they actually help patients! They
can give you details of their nearest group.

Organophosphate Users Support Group OPUS


This is the charity I have helped to set up to support people with OP poisoning on the Welsh
Borders. Membership is free. Write to The Rev Nick Reid, The Vicarage, Lydbury North,
Shropshire, SY7 8AU for an information pack.
www.rs-opus.co.uk

The Samaritans a nationwide charity providing confidential emotional support to anyone in a crisis.
Tel: 0345 90 90 90 – 24 hours a day, 7 days a week. E-mail: samaritans@anon.twwells.com.
They also have over 200 Branches across the UK and Ireland, ask the Operator for local Branch
numbers or look in the phone book.

Suicide is a real risk for severely afflicted CFSs, especially when their illness is trivialised and
dismissed by ignorant doctors.

FURTHER INFORMATION AND SUPPORT FOR DOCTORS


I am the secretary of the British Society for Ecological Medicine (previously the British Society for
Allergy, Environmental and Nutritional Medicine). Up until now this has been a doctors only society.
However, the Society is now offering associate membership to allied groups and non-medical but
scientifically trained people such as dieticians, health visitors, nurses and so on. We now offer
supporter membership to anybody who is interested. Supporters are allowed all the benefits of
membership except admission to scientific meetings. Membership includes the Journal of Nutritional
Medicine - this is a quarterly publication in which original research, literature reviews, clinical
practice, editorials, letters etc appear pertaining to allergy and environmental matters. Recently we
have linked up with the Australian College of Nutritional and Environmental Medicine and the
American Academy of Environmental Medicine and the Journal is circulated to all these groups.

The Journal of Environmental and Nutritional Medicine has published more widely on subjects
pertaining to CFS than any other journal. It has closely followed the organophosphate debate, the
silicone debate, carbon monoxide, hormones in the treatments of CFS and so on. It is an excellent
read. If anybody is interested in membership, please apply to Sue Price, BSEM, PO Box 7,
Knighton, Powys LD7 1SL, Fax 01547 550339. Web site: www.ecomed.org.uk

We also run training courses for doctors to educate them about Environmental medicine – ie looking
for causes of illness rather than symptom suppression with drugs. Those doctors completing training,

141
undergoing audit and submitting case histories to the satisfaction of the Training Panel (made up of
senior doctors of the Society – not me!) go on our Practitioner List. This is changing all the time as
new practitioners qualify. See my website for updates.

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This paper has only just been submitted to the Journal of Nutritional and Environmental
Medicine so please do not circulate generally – this is just for your personal interest. Actually I
am in the throes of rewriting this!

Dr Sarah Myhill MB BS, Upper Weston, Llangunllo, Knighton, Powys, Wales, UK LD7 1SL
Tel: 01547550331 Fax: 01547550339 E-mail: smyhill@globalnet.co.uk Website: www.drmyhill.co.uk

The biological basis of fatigue: a proposed underlying pathophysiological model for Chronic Fatigue
Syndrome with implications for treatment and a diagnostic test
March 2006

Introduction and Overview


Excessive physical or mental exertion in normal people causes a short or long term reduction in physical and mental
ability. The subjective symptom of this reduced state of ability is the symptom of fatigue. It is proposed that the
mechanism by which this symptom arises is a reduction in mitochondrial function. Furthermore it is proposed that the
symptoms of chronic fatigue syndrome are caused by a pathological reduction in mitochondrial function.

Mitochondria are genetically different, symbiotic cell organelles that are responsible for supplying energy to
cells in the form of adenosine triphosphate (ATP). In exchange, cells provide mitochondria with a hospitable
environment, the raw materials necessary for mitochondria to survive and to make energy for cell metabolism.
This perfect synergism between host cells and mitochondria arose very early in the course of our evolution. To
create energy in the form of ATP, there are three major biochemical processes. Firstly there is the conversion of
oxidisable substrate (carbohydrate, fatty acids and/or amino acids) to acetyl groups. Secondly these acetyl
groups enter Kreb’s citric acid to form NAD. Thirdly NAD is required by oxidative phosphorylation to
convert ADP (adenosine diphosphate) to ATP. In producing ATP by these biochemical processes, mitochondria
need oxidisable substrate and oxygen and release carbon dioxide and water. Incidentally, mitochondria are also
a major source of free radicals. In excess, these by-products accelerate the normal ageing process and cause
degenerative disease.

Mitochondria also require essential nutrients to create the necessary molecular machinery to allow these
biochemical processes to work. These include enzymes for the mobilisation of acetyl co A, for Kreb’s citric
acid cycle and for oxidative phosphorylation. These would include the raw materials for complexes I, II, III,
IV, antioxidants such as co-enzyme Q 10, functional membranes (i.e. essential fatty acids), transport proteins
such as acetyl L carnitine, functional translocator proteins, minerals (for ion pumps), substrate for de novo
ATP (D-ribose) and many other co-factors.

It is well recognised that fatigue can arise from a deficiency of oxidisable substrate. In the case of glucose,
short chain fatty acids and amino acids, this will occur with starvation, malabsorption or hypoglycaemia. In
the case of oxygen, fatigue can result from respiratory failure, such as chronic obstructive airways disease or
anaemia. Heart failure can cause fatigue because the low cardiac output produces a failure to supply both
oxygen and oxidisable substrate.

It is proposed that chronic fatigue syndrome arises because of mitochondrial failure, not solely because of one
of the well recognised above mechanisms (although in severe CFS this may be part of the root cause), but
because the molecular machinery of mitochondria that recycles ATP is malfunctioning. This can occur for
various reasons including micronutrient deficiency, endogenous or exogenous toxic stress (that inhibits
mitochondrial enzymes) or because of malfunctioning mitochondrial DNA that may be genetic or acquired.
The number and structure of cristae in mitochondria are proportional to mitochondrial functional activity. In
CFS, biopsies have demonstrated fewer cristae, more branching and more fusion, which would result in
diminished activity (1).

This model would elegantly explain the two most clinically confusing aspects of CFS:

1. The many ways in which CFS can be acquired. This is because there are many ways by which
mitochondria can be rendered dysfunctional.

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2. The apparent multiplicity of symptoms that sufferers experience. This is because mitochondria are
a common biological unit to all cells. All cells are dependent on mitochondria for energy supply
and so when cell function is impaired or slowed, a wide range of symptoms may manifest.

Two symptoms that are common to all CFS sufferers are very poor stamina and delayed fatigue. This can be
explained by looking first at the biochemistry of normally functioning mitochondria and examining how this
process can go awry.

How Fatigue Can Result From the Malfunctioning of Mitochondrial


The job of mitochondia is to produce ATP. Most ATP is created in mitochondria as a result of the oxidative
phosphorylation of ADP. ATP is transported out of mitochondria into its host cell via translocator protein
OUT. Once in the cell cytosol, ATP is available to energise any function of that cell. This may be muscle
contraction, nerve conduction, hormone synthesis, ion pumps, detoxification reactions, healing, repair, and a
number of other functions. In order to release energy from ATP, magnesium is required. As energy is released,
ATP is reduced to ADP and then ADP is transported back into the mitochondria via translocator protein IN
where it is again recycled back into ATP. The time taken for each ATP molecule to complete this cycle is very
approximately 10 seconds (2).

In the normal heart at rest about 5-10% of the total amount of ATP lies inside mitochondria. With intense
work, up to 23% of ATP is found inside mitochondria as they strain to keep up with demand (2).

It is proposed that fatigue occurs when this cycling is slowed and the pool of ATP in the cytosol runs low.

The Biological Basis of Stamina


Optimal bodily function can only occur when its energy requirements are met by ATP supply. However, if
energy is required at a rate greater than can be supplied, there is a build up of ADP. When this build-up
occurs, two molecules of ADP combine to form one molecule of ATP and one molecule of AMP (catalysed by
adenylate kinase). In the short term this supplies extra ATP. However, this is a very short-term solution: cells
have to maintain a constant ratio of ATP to ADP to AMP. If AMP levels rise, some is broken down into
purines, which leak out of cells. Therefore, if energy requirements continue at a higher rate than can be
sustained, there is a net drain of ATP, ADP and AMP out of the cell. Soon the availability of energy is severely
impaired and systemic cell functioning has to slow. The clinical result is poor stamina, which may manifest
physically or mentally. Depending of other pathological factors the host is subject to, such as a particular
weakness of an organ, other symptoms may arise.

When ATP, ADP and AMP are lost from cell, the cell has to make de novo ATP. ATP is quickly and easily
synthesised from D-ribose, a five-carbon sugar. This occurs only in small amounts in foodstuffs and so cells
are largely reliant on endogenous synthesis. D-ribose can be made from the six-carbon sugar glucose, but the
biochemistry is difficult and slow. It occurs via the pentose phosphate shunt. It may take hours or even days to
replete a severe deficiency, which clinically manifests as delayed fatigue.

The figures are that by comparison, for oxidative phosphorylation to create 0.7mmol/sec of ATP, de novo
synthesis of ATP makes 0.000001mmol/sec of ATP (2). In other words, the equivalent amount of ATP created
from de novo synthesis takes 70,000 times longer. Draining ATP, ADP and AMP out of cells into purines is
metabolically devastating. During this delay, a small amount of ATP can be made from glucose directly but
only by switching into anaerobic metabolism with the production of lactic acid. Lactic acid is responsible for
some of the muscle symptoms experienced in fatigue syndromes.

The biochemistry of mitochondrial failure is also involved in the over-training syndrome. When athletes train
too hard, their performance declines and this is accompanied by muscle symptoms. The normal ageing process
(which also results in loss of stamina, delayed fatigue and organ failure) may also be caused by acquired
mitochondrial dysfunction.

Mitochondrial dysfunction is likely to be responsible for the fatigue that accompanies many degenerative
conditions such as heart failure (3), Parkinson’s disease (3, 4) and Alzheimer’s disease (5).

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Possible Biochemical Lesions That Could Result In Chronic Fatigue
The end result is slow recycling of ATP, causing impaired energy supply at the cellular level. There are many
possible biochemical reasons why mitochondria may malfunction:

• Congenital mitochondrial genetic disorders resulting in poor mitochondrial function (6). It is possible
that one of these is the absence of mtDNA haploid H group.
• Acquired mitochondrial DNA damage resulting from the ageing process.
• Acquired mitochondrial DNA damage resulting from endogenous free radical damage or exogenous
free radical damage (such as pesticides, volatile organic compounds or heavy metals). Poor
antioxidant status can exacerbate both.
• Malfunction in the production and delivery of acetyl groups to Kreb’s citric acid cycle. This would
include deficiency of acyl L carnitine resulting in poor substrate delivery to mitochondria from
inefficient movement of fatty acid groups across mitchondrial membranes (9).
• Malfunction in Kreb’s citic acid cycle resulting in poor provision of NAD to fuel oxidative
phosphorylation.
• Low levels of ATP (7).
• Inefficient magnesium dependent conversion of ATP to ADP. Magnesium has been shown to be
effective in treating CFS (8).
• Magnesium deficiency. When magnesium levels start to fall, problems arise first in enzymes with the
lowest affinity for magnesium. In mitochondria these would be the enzymes that carry out the
feedback control of the pyruvate dehydrogenase complex, namely pyruvate dehydrogenase
phosphatase. The first result of low magnesium therefore would be to decrease the flow of pyruvate to
acetyl co A because of down regulation f this complex. The way this feedback normally works is that
ATP has a higher affinity for magnesium ions than does ADP. Thus, when the energy charge of the
cell goes down (and thus ATP levels fall), the free magnesium ion concentration normally rises, and
this signals the pyruvate dehydrogenase complex to feed more pyruvate into the Krebs cycle to build
the ATP level back up. If there is a general depletion of magnesium, there would be a false signal to
downregulate this flow, and the ATP would not be restored. This problem should show up before
other enzymes notice a depletion of magnesium, owing to their greater affinities for it. However the
overall effect would be to slow energy production.
• Slow transport of ATP and ADP across mitochondrial membranes by translocator proteins.
• Inefficient oxidative phosphorylation, either because of damage to protein complexes I, II, III or IV or
because of deficiency of coenzyme Q 10 (8), the most important shunter of electrons in oxidative
phosphorylation. Magnesium is also an essential co-factor in oxidative phosphorylation.
• Poor synthesis of de novo ATP from glucose via D-ribose as a result of poor function of the pentose
phosphate shunt. This occurs when ATP is converted to ADP and then to AMP, which is lost from
cells.
• Poor synthesis of NAD due to vitamin B3 deficiency.
• Poor supply of oxygen to mitochondria either from poor blood supply or acidosis, which causes a shift
of the oxygen/haemoglobin dissociation curve. This could occur in hyperventilation. Translocator
protein function is particularly susceptible to pH changes.
• Hyperglycaemia. Excessive glucose in muscles is very damaging to them, so blood supply is reduced
by pre-capillary arterioles which release cytokines to cause arteriolar contraction. This has the
metabolically desirable effect of preventing excessive glucose getting to muscle and damaging it.
However the oxygen supply to the muscle will be also be impaired (10).
• Hypoglycaemia.
• Poor antioxidant function such as glutathione depletion, gives rise to elevation of superoxide and
peroxynitrite, which block aconitase, cytochrome oxidase and NADH shuttles. Therefore aerobic
glycolysis is blocked either because of a problem in the respiratory chain, such as superoxide or
peroxynitrite blocking cytochrome oxidase, or because the NADH shuttles are not able to operate fast
enough to shuttle the NADH produced by glycolysis in the cytosol into the mitochondrial respiratory
chain fast enough to keep up.
• Other unidentified sites.

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Mitochondrial DNA is particularly susceptible to toxic stresses because it is not separated off in its own
“nucleus” but mixes freely inside mitochondria. Furthermore mitochondrial DNA is circular and so is easily
distorted and damaged by free radicals that are inevitably produced as a part of oxidative phosphorylation. As
cells (or possibly mitochondria) perceive that their energy supply is failing, they stimulate the formation of
new mitochondria. However, when mitochondria replicate, they preferentially replicate damaged mitochondria
(11). The mechanism of this is uncertain, but this has the effect of amplifying the initial damage. Indeed this is
the basis for the normal ageing process – one rarely finds acquired mitochondrial lesions in people under the
age of forty – thereafter they increase exponentially. Oxidative damage to mitochondria has been estimated to
be ten-fold higher than damage to nuclear DNA (11) and the mitochondrial DNA mutation rate may be
seventeen times higher compared to nuclear DNA (12). Furthermore, unlike nuclear DNA, mitochondrial DNA
lack significant DNA repair mechanisms (13).

Genetic factors are also likely to be important. MtDNA haploid H is a strong predictor of outcome following
severe sepsis conferring a 2.12 fold increased chance of survival. The reason is that this gene is associated
with enhanced respiratory chain activity. Indeed mitochondrial activity is the strongest predictor of outcome
following infectious disease (14). Mitochondrial DNA is inherited from one’s mother. This may explain why
clinically one often sees mother-daughter or mother-son CFS sufferers within a family, but rarely father-
daughter or father-son sufferers (personal observation).

Secondary Biochemical Problems Result in Cell Damage, Particularly to Muscle Cells


40% of resting energy goes into maintaining calcium/magnesium and sodium/potassium concentration
gradients across cell membranes. If energy supply is impaired, these ion pumps start to fail, one result of
which is for magnesium to leak out of cells. This would explain low intracellular magnesium levels, which are
almost universal in CFS. This also results in muscle damage.

Magnesium deficiency: for muscles to relax or stretch, magnesium is an essential co-factor without which
muscle is damaged. Therefore muscle symptoms and / or damage can occur in CFS for at least three reasons –
early switch to lactic acidosis, poor antioxidant status and magnesium deficiency. Intracellular magnesium
deficiency may therefore be a cause of and a symptom of mitochondrial failure.

Lactic acidosis: there is a switch to anaerobic metabolism when energy demand exceeds energy supply. This
results in excessive intracellular lactic acidosis, which is a feature of CFS (15, 16) and may explain many of
the muscle symptoms in CFS. The switch to anaerobic metabolism may not dictated by just by slow recycling
of ATP per se. It is largely dictated by an inability to turn NADH around fast enough. If the NADH could be
handled fast enough, the metabolism would not go anaerobic.

Poor antioxidant status: glutathione depletion allows a rise in free radicals. They in turn block aconitase and
cytochrome oxidase which will slow oxidative phosphorylation. Decreased activity of superoxide dismutase
can also give rise to elevated superoxide and ultimately to elevated peroxynitrite as well, producing slowed
oxidative phosphorylation, but depleted glutathione or lowered activity of glutathione peroxidase (or even
glutathione transferase) will allow hydrogen peroxide to rise, and and this will slow the superoxide dismutase
reaction by the process known in chemistry as product inhibition.

When oxidative phosphorylation is uncoupled by toxic stress, the result is the production of excessive numbers
of free radicals, especially superoxides and nitric oxide. These may combine to form a more toxic free radical:
peroxynitrite. This is efficiently scavenged by B12 and may explain the efficacy of high dose parenteral B12 in
the treatment of fatigue and fatigue syndromes (17-27). Superoxides are scavenged by the enzyme superoxide
dismutase and a deficiency of this is common in fibromyalgia. Actual muscle damage has been found in CFS,
not just by disuse atrophy but also with diffuse or focal atrophy of type II fibres (28).

Tertiary Immune Problems


When cells are damaged, this may act as an antigenic focus resulting in inappropriate immune reactions that
have the potential to switch on a chronic low-grade inflammatory response, allergic reactions, biological
indications of autoimmunity, frank clinical autoimmunity or a combination of these factors.

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Both these secondary and tertiary problems are disease amplifying effects and initiators of other disease states.

Hormonal Influences
Acute severe stress, such as overwhelming infection (e.g. septicaemia) induces a biphasic cellular response.
The acute phase is marked by an abrupt rise in the secretion of stress hormones with an associated increase in
mitochondrial and metabolic activity. However, the combination of severe inflammation and secondary
changes in endocrine profiles diminishes energy production, metabolic rate and normal cellular processes,
leading to multiple organ dysfunctions. However not as many patients progress to organ failure as might be
expected from the degree of shutdown, suggesting that this decline in organ function is a protective mechanism
rather than arising as a result of tissue damage (29). This is a recognised response to acute overwhelming
septic or toxic insult.

Part of the pathophysiology of CFS may result from a more long-term response to overwhelming insults and
the clinical syndrome may actually be the result of a protective mechanism that works by producing functional
and structural abnormalities. That is to say, a series of insults, which may be viral, toxic, allergic, nutritional
or hormonal, may produce an internal environment that is perceived to be or actually is damaging to cells.
Resultantly, cells go into a state of “hibernation,” as a direct result of the insults or in order to protect
themselves from the insults. There may be several possible mechanisms but the end result is reduced cellular
metabolism.

Structural mitochondria abnormalities have already been demonstrated in post viral fatigue syndrome with
obvious degenerative changes in 80% of biopsies (1)

Female sex hormones have marked immmunodysruptive effects and malign effects on nutritional status. The
extensive use of the oral contraceptive pill in young women probably explains the fact that 75% of CFS
sufferers are women with the mean age of onset 29-35. These women are most likely to have been subject to
several years of the OCP (37).

Hans Selye was the first to identify physiological responses to stress. During the acute stress response there is
adrenal hypertrophy associated with raised levels of stress hormones. This allows the organism to cope with
the acutely stressful event. Once this insult or stress is removed, the adrenal gland reverts to its normal size.
However if the stress or insult is on-going and unremitting with no time for recovery, it leads to adrenal
atrophy and ultimately death of the organism. Perhaps CFS represents a phase in this decline as the hormonal
picture in CFS is one of general suppression of the hypothalamic-pituitary-adrenal axis (30).

The endocrine changes that accompany CFS are remarkably similar to those that accompany the endocrine
changes in response to acute illness and it is instructive to review these now (29). Following an acute stress
(such as sepsis), during the first few hours, there is a massive release of stress hormones including ACTH and
cortisol, catecholamines, vasopressin, glucagon and growth hormone. This results in improved circulation,
increased levels of glucose, fatty acids and amino acids. This process can increase intracellular metabolism by
up to 200%, which can be used for action and repair.

After a few days, this is then followed by a completely different hormonal profile characterised by
inappropriately low levels of vasopressin (resulting in low blood pressure), onset of the sick euthyroid
syndrome (functional hypothyroidism in the presence of normal levels of thyroid hormones) and reduced
adrenal responsiveness to ACTH. The magnitude of these changes has major prognostic implications. The
mechanism of this action appears to be through the effect of cytokines and nitric oxide at hypothalamic,
pituitary and end-organ levels.

The effect of corticosteroids depends on the duration of exposure. In acute stress there is increased activity of
mitochondrial enzymes. In chronic stress there is reduced mitochondrial function.

In laboratory models, mitochondrial respiration is increased during the early phase (up to 16 hours) but
consistently falls with protracted inflammation. This decline in energy production is probably triggered by
nitric oxide and cytokines, which are produced in large amounts during the acute phase of acute illness. Nitric

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oxide and cytokines have a large inhibitory effect on mitochondrial respiratory enzymes. Mitochondria also
have receptors for glucocorticoids and thyroid hormones. Thyroid status is a key modulator of mitochondrial
function. Availability of ATP is the rate-limiting step of all cellular metabolism. The shut-down in energy
availability is induced by high levels of cytokines (31) and nitric oxide and is thought to be a secondary
protective effect to try to reduce the toxic effects on cells during the recovery phase. Insulin resistance (32) and
inadequate levels of thyroid hormone, especially T3, are felt to be particularly important in poor mitochondrial
function (29).

Discussion: Clinical Implications for Treating CFS


The majority of patients with CFS have their illness triggered either by viral infection, such as glandular fever,
influenza, vaccination etc., or by toxic insult, such as pesticide poisoning, carbon-monoxide poisoning,
poisoning by volatile organic compounds or poisoning by silicone implants etc. A minority of CFS cases can
be accounted for by other physical stresses or by psychological stress.

Most people who get a viral infection or who are poisoned have a period of illness lasting a few days or weeks
but then go on to recover normally. When CFS is triggered by a virus or an acute case of toxicity, the event
causes the acute inflammatory reaction followed by the inevitable abreaction. However, CFS patients are kept
in this abreaction state by the aforementioned protective mechanism reacting to an ongoing underlying
predisposing factor(s). A large amount of data has been provided by Oldstone and colleagues demonstrating
that infections caused by poorly replicating viruses do not kill cells but instead interfere with their specialized
or “luxury” functions. In other words, cellular function may be grossly impaired but there is no macroscopical
destruction (33).Where CFS has a slow insidious onset, this probably reflects a gradual slowing down of
mitochondrial function as a result of micronutrient deficiencies, toxic stresses, poor antioxidant status and/or
mitochondrial DNA lesions. In many cases, both of these mechanisms apply.

Experience treating CFS sufferers shows that there are many different ways in which sufferers recover. This
model of CFS gives a logical basis to the mechanisms of recovery.

Pacing
Two symptoms common to all cases of CFS and which are critical to the diagnosis are firstly: very poor
stamina and secondly: a grossly disproportionate amount of delayed fatigue following exertion.

The cause of poor stamina in CFS is as follows: Normally ATP in the mitochondria is recycled approximately
every ten seconds. If this recycling is slow, as it is in CFS, then energy supply will become limited within a few
minutes of starting to exercise. Clinically strength is good (allowing for disuse atrophy), but stamina very
poor.

Delayed fatigue may result from at least two possible mechanisms:


1. The recycling of ATP is impaired. If ATP is used faster than it can be recycled, the result is a build
up of ADP and some, inevitably (2) is shunted into AMP. This is only recycled very slowly, if at
all, so over-exertion results in a net drain of ATP from cells. This means de novo ATP must be
created from D-ribose via the pentose phosphate shunt. This biochemical process is slow and it
may take several days to replenish levels of ATP. During this time the sufferer experiences even
more fatigue and symptoms than usual.
2. Poor antioxidant status resulting in slow oxidative phosphorylation, which produces excessive free
radicals. The excess of free radicals results in mitochondrial and/or cell damage, which may take
some days to repair. The damage could manifest as muscle pain (from above mechanisms) or from
inappropriate immune activity with lymphadenopathy and malaise.

These disease exacerbating factors cause severe symptoms for many sufferers

As a result of all the above, it is vital for CFS patients that they do not use up ATP faster than the rate at
which it can be recycled. Sufferers must learn to pace activities carefully and function within their energy
limits and not allow delayed fatigue to occur. If they do, in addition to fatigue, they risk further secondary and
tertiary damage to muscles, to the immune system and possibly other organ damage. Sufferers must limit
activities to a short time, then rest and do a little more. This allows time for ADP to be converted back into to

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ATP. Interestingly caffeine may have therapeutic benefit because caffeine stimulates cyclic AMP and assists
the scavenging of AMP back to ADP.

Micronutrient Supplementation
Particular nutrients are vital to the many biochemical reactions that must occur for fully functioning
mitochondria. All sufferers should receive supplements containing at least (and in some cases much more than)
the RDAs of all essential B vitamins, fat-soluble vitamins, essential fatty acids and minerals. They should also
receive the full range of amino acids. The amino acids may be obtained from a high protein diet if the digestive
system isn’t too impaired, as it can be in CFS.
In theory, this cocktail of nutrients should allow cells to manufacture all essential enzymes and co-factors for
normal metabolism and in healthy people this is the case. However, in practice this is often not the case in CFS
patients. There are a number of reasons why CFS patients can fail to properly utilise nutrients pertinent to the
proper functioning of mitochondria. Examples include various disease processes, excessive free radicals,
possibly acquired DNA defects, toxic stress or medicinal drugs.
Even with apparently adequate nutritional support, tissue levels of enzymes and co-factors are low. One good
example of this is endogenous production of coenzyme Q 10. For its synthesis, cells need folic acid, vitamins
C, B12, B6 and pantothenic acid, together with several minerals and amino acids. If there is excessive free
radical stress (for example with intensive exercise) then coenzyme Q 10 is rapidly depleted. Statins, the
cholesterol reducing drugs, inhibit 3-hydroxy-3-methylglutaryl-coenzyme A reductase (HMG-CoA reductase).
This enzyme is essential for endogenous production of coenzyme Q 10. It is very common to see poor levels of
coenzyme Q 10 in CFS and arguably, this nutrient should be supplemented as routine.

Sinatra (2) has demonstrated that many cases of heart disease are secondary to heart muscle failure and this is
secondary to mitochondrial failure. He has identified four molecules essential for normal mitochondrial
function. These are magnesium, acyl L carnitine, D-ribose and co-enzyme Q 10 (ubiquinone). There are likely
to be others. By supplementing sufferers with a broad range of micronutrients, together with these essential
nutrients, Sinatra has shown how mitochondrial function and therefore heart function can be normalised. The
mitochondrial dysfunction in CFS is the same as that in heart failure and so it is logical to presume it could
respond positively to the same treatment. Indeed, early clinical experience is that excellent results can be
achieved with this treatment.

D-ribose is made from glucose via the pentose phosphate shunt. However, in CFS patients, this series of
reactions is abnormally slow and ATP is consistently low. ATP is rapidly made from D-ribose, so
supplementing with this nutrient allows ATP levels to be quickly restored. Clinically, D-ribose often abolishes
the delayed fatigue in CFS and improves muscle symptoms (there is no switch to anaerobic metabolism when
ATP is plentiful). In CFS, D-ribose should probably be supplemented as routine.

Sleep
All living organisms need to have a period of dormancy or shut down to allow healing and repair to take place.
Homo Sapiens are no different. The average physiological requirement for sleep is 9 hours taken during the
hours of darkness. People living away from the Equator require more in the winter and less in the summer.
Complete sleep deprivation results in death. Sleep is an absolute necessity for good health and any amount of
sleep deprivation results in measurable physical and psychological impairment. The average Westerner gets
7½ hours sleep in every 24 hours and suffers chronic low-grade sleep deprivation as a result. Restoring a
normal sleep pattern is an essential pre-requisite for recovery from fatigue syndromes because this is when
mitochondria can shut down and allow repair mechanisms to function.

Diet
There are two common dietary causes of fatigue. The first is carbohydrate intolerance. Humans evolved eating
a diet that had a low glycaemic index. In recent decades Western man has switched to eating a high glycaemic
index diet with the average Westerner consuming 150lbs of sugar annually together with high intakes of grains,
potato and high GI fruits and fruit juices. In the short-term this causes mild hyperglycaemia. Hyperglycaemia
is potentially dangerous to muscles and so arterioles have evolved a system of protecting muscles by a
periarteriolar collar of fat. If the blood sugar rises, this collar of fat releases a cytokine, which makes the
arteriole contract. This has the metabolically desirable effect of preventing too much sugar getting to muscle
and damaging it (11). However, the oxygen supply to the muscle will be impaired as well, so the muscle cannot

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function properly. In addition, the cytokine released by the fat causes inflammation and will damage the
arteriole wall. In CFS, we see high levels of cytokines. The general presumption is that these come from
immune activity, as a result of viral or toxic stress. However, they may also be produced by fat cells as a
result of too much carbohydrate in the diet.

When blood sugar levels run too high, insulin is released and this may result in rebound hypoglycaemia. This
causes fatigue, particularly mental fatigue because the brain can only function with glucose as substrate. In
contrast, the heart is relatively protected from hypoglycaemia since its’ preferred energy source is short chain
fatty acids.

In summary, fluctuating blood sugar levels switch mitochondrial function on and off, either because of
restricted supply of oxygen (hyperglycaemia) or glucose (hypoglycaemia).

The second common dietary cause of fatigue is food allergy or intolerance. The most common sources are
grains, dairy products and yeast, yet any food can be implicated (34).

Reducing Toxic Stress


There are many ways in which mitochondria can be damaged or their enzymes systems inhibited by toxic
stresses. It is essential to identify any factors that may be causing on-going damage to mitochondria. The most
obvious would be exposure to pesticides and other such xenobiotics that uncouple oxidative phosphorylation
and/or block translocator protein. Clinical experience is that one would wish to consider the following
categories of toxin:

• Pesticides and herbicides (“sheep dip flu”, spray drift from agricultural herbicides).
• Heavy metals – especially mercury from dental amalgam
• Volatile organic compounds (“sick building syndrome”, “9/11 syndrome in firemen.”)
• Noxious gases – carbon monoxide poisoning, NOX, SOX (from polluting industry.)
• Immuno-toxic stress from vaccinations.
• A combination of the above (“Gulf War Syndrome.”)
• Siliconosis (from synthetic prostheses.)
• Cleaning and disinfectants (eg formaldehyde, glutaraldehyde.)

Many of these toxic compounds also induce multiple chemical sensitivity (35).

Anti-Oxidant Status
Poor antioxidant status may result from disease processes, micronutrient deficiencies, or from metabolic
abnormalities. It may be wise to measure antioxidant status routinely. This would include: coenzyme Q 10,
superoxide dismutase and glutathione peroxidase.
High dose vitamin B12 is often very helpful, when taken at supraphysiological doses, to act as a scavenger of
peroxynitrite. Poor antioxidant status is known to exacerbate numerous diseases.

Secondary Organ Failures


Due to the above problems, patients with more severe CFS may demonstrate indications of secondary organ
failures. These compound all of the above problems and dramatically increase the number and intensity of
symptoms.

The heart is the most metabolically active organ in the body. Each heart muscle cell contains on average 5,000
mitochondria. In very severe CFS we see low grade heart failure as demonstrated by Peckerman (36) with
poor cardiac output as measured by impedence cardiography. He demonstrated that the degree of disability in
severe CFS is proportional to cardiac output and postulates that many of the symptoms seen in severe CFS
could be a result of poor cardiac output. For example, patients suffer low blood pressure, low blood volume,
marked postural hypotension and perfusion defects. They have to lie down most of the time, have poor
peripheral circulation, poor ability to regulate temperature due to poor skin circulation and suffer marked
cognitive dysfunction.

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The brain is the most anatomically and biochemically complex organ. It is highly dependent on and sensitive to
a regular supply of oxygen and glucose. As their energy supply is so impaired, it is no wonder that CFS
patients’ experience cognitive dysfunction, including difficulties with short-term memory, problems with
balance and co-ordination and often sensitivities to light, sound and touch.

The following clinical problems often seen in CFS may also result from poor mitochondrial function:
• Hormonal effects – it is well recognised in CFS that there is a general suppression of the
hypothalamic-pituitary-adrenal axis resulting in secondary hypothyroidism, hypoadrenalism, low
levels of sex hormones, poor endogenous production of melatonin and low levels of growth hormone.
These deficiencies may all need addressing and correcting.
• Poor immune function with susceptibility to infections and a tendency to acquire allergies and
autoimmunity.
• Poor digestive function.
• Poor ability to detoxify xenobiotics. For example, alcohol intolerance is extremely common in CFS as
is intolerance to many prescribed medications, especially antidepressants and beta-blockers.

A Test for CFS


This biochemical model of CFS gives us the basis of a test for chronic fatigue syndrome. The level of ATP can
be measured. The efficiently of ATP to ADP conversaion, the movement of ATP and ADP across mitochondrial
membranes and the rate of oxidative phosphorylation can also be measured. Considered together, the results of
these tests should not only enable us to measure the degree of disability of CFS patients but also identify the
biochemical lesion(s) responsible.

In addition to directing treatment in a logical and scientific manner, other benefits will be derived from these
tests:
• They would settle the argument over whether CFS, when diagnosed by the more stringent diagnostic
criterias, is psychological in origin. This alone will save the millions of pounds that continue to be
invested in this line of scientific inquiry.
• It would identify those patients who are fatigued for other reasons, including of psychological origin
and whom may benefit from graded exercise and cognitive behaviour therapy.
• The severity of a patients illness could be graded and this would help with management of their
recovery.
• Patients’ entitlement to welfare and other benefits could be measured objectively, rather than the
current system, which relies on subjective opinion, from both the patient and of the local bureaucrats
with which the patient is dealing with.

Such a test of mitochondrial function is already in clinical use and preliminary results will be published soon.

Conclusion
Mitochondrial failure is the central pathophysiological lesion in patients with chronic fatigue syndrome. This
may be caused by many factors since mitochondria can be damaged in many different ways. In fact, they are
particularly susceptible to damage because their main function is oxidative phosphorylation, which produces
free radicals in close proximity to mitochondrial DNA. As a result, acquired lesions are extremely common, if
not the norm. Since mitochondria are common to all cells, sufferers may present with a bewildering
multiplicity of symptoms. The multiplicity of symptoms taken as a whole cannot be explained by one singular
model of physiological disease and intensive research by the psychiatric community has failed to produce any
convincing hypothesis or effective treatment.

The model of CFS described in this hypothesis is supported by numerous and disparate studies and
importantly, can be measured objectively. The tests described can determine the site, nature and severity of the
biochemical lesion(s). The data from the tests can be used to direct treatment with the potential to
substantially improve or cure sufferers.

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Thanks
My thanks go to John McLaren Howard, Rich Van K and Chris Burton for their very helpful input and
comments!

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Citizens’ paper – Results from the Mitochondrial function profile test

The following are the results of the first 71 patients who have undergone the mitochondrial function.
I have now done over 200 and the results are consistent with the first 71.
From:
Mr Craig Robinson, 5 Greenway Cottage, 101 Summerleys Road, Princes Risborough, Bucks, HP27
9QA

Clinical Research: Results From The Mitochondrial Function Test in Patients with Chronic Fatigue
Syndrome: A biochemical test for CFS which measures the level of disability, identifies the site of the
lesion and gives guidance for treatment
Convenor: Mr Craig Robinson
Authors: Betty Bell, Sam Boardman Weston, Chris Buckle, Elizabeth Burgess, Juliet Caird, Samantha Chambers,
Morag Christie, Rosemary Cox, Mark Daffin, Meryl Davies, Beryl Dixon, Tony Ditchum, Shelia Dorwood, Susan
Eales, Gill Erskine, Christine Free, Anna Freer, Jill Garrod, Tony Grinnell, Caroline Hart, Patrick Hession, Louise
Hewitt, Sarah Hodnett, Margaret Horrox, Gillian Houghton, Gwalia Howels Judith Hughes, Helen Humphries, Laura
Jones, Brenda Limby,Lauren Lindee, Angela Lowe, Eleanor Lowe, , Shirley McLachlan, Fiona McVey, Claire
Martindale Lyn Mayers, Kath Milner, Clive Moore, Betty Moorhouse, Patricia Morley, Ann Moule, Louise Munro,
Jo Newgrange, Zoe Norris, Claire O Brien, Janet Olivier, Richard Olivier, Catherine Owen, Rosemary Peach, Kate
Phimister, Dennis Price, Dennis Purdue, Diane Richards, Craig Robinson, Rodney Rymell, Holly Simpson, Paul
Smith, Diane Spencer, Roger Taylor, Mark Thacker, Rebecca Trenchard, Margaret Trillo, Albert Trillo, Helen Sawyer,
Cheryl Schaverien, Sue Spencer , Jeremy Waite, Audrey Walsh Heron, Carol Watchorn, Jean Wilding, Heather Witt,
Anthony Worthington.
.
Abstract
Purpose: To test the hypothesis that CFS is a symptom of mitochondrial failure.

Design: An observational study which looks at mitochondrial function tests in 71 CFS sufferers. The

153
mitochondrial function tests measured several parameters of mitochondrial function and the critical ones
were scored in order to assess the level of mitochondrial function so this could be related to clinical
disability.

Subjects and methods: 71patients with a diagnosis of chronic fatigue syndrome according to the Fukodo
criteria consecutively attending a clinic specialising in treating CFS were recruited.

Results: There is a clear statistically sound relationship (p<0.001 by Student’s t-distribution) between the
mitochondrial function score and the level of clinical disability.

Conclusion: These results support the hypothesis that CFS is a symptom of mitochondrial failure. This
suggests we now have an objective test for chronic fatigue syndrome which also indicates the site of the
biochemical lesion, its severity and therefore has important implications for management of patients.

Introduction
It has been suggested that Chronic Fatigue Syndrome (CFS) is a symptom of mitochondrial failure. The two
key symptoms central to all CFS sufferers are poor stamina and delayed fatigue and these have both been
elegantly explained in terms of mitochondrial micropathology (JNEM Myhill 2006 – awaits publication). It is
hypothesised that the functional biochemical lesion in CFS is limited availability of adenosine triphosphate
(ATP) for cellular metabolism. There are many possible biochemical sites which could be malfunctioning and
which would result in this problem. However a test has been developed by John McLaren Howard at the
Biolab Medical Unit in London which addresses many of these possible sites. By totalling the damage or
deficiency at each of these sites, it is possible to arrive at a “mitochondrial energy score”. Not only does this
score correlate closely to the level of disability in sufferers, the site of the biochemical lesion can be identified
and appropriate remedial measures instigated.

Subjects
71 consecutive patients with a diagnosis of chronic fatigue syndrome according to the Fukodo criteria
attending a clinic specialising in treating CFS were recruited. The nature of the test was explained and
participants all agreed for blood to be taken into an EDTA sample bottle for transport to Biolab Medical Unit
for mitochondrial function tests. The level of disability in subjects was jointly assessed by the subjects
themselves and the clinician using standard disability scores. The score was recorded in the clinical notes
before the mitochondrial function test was done. The laboratory doing the mitochondrial function tests were
not aware of the level of disability so the test was “blinded”.

The CFS clinical disability was scored according to the following scale:

CFS Ability Scale


10: No symptoms with exercise. Normal overall activity. Able to work or do house/home work full time
with no difficulty.

9: No symptoms at rest. Mild symptoms with physical activity. Normal overall activity level. Able to
work full time without difficulty.

8: Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction needed for
activities requiring exertion only. Able to work full time with difficulty in jobs requiring exertion.

7: Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning close to 90%
of expected except for activities requiring exertion. Able to work/do housework full time with
difficulty. Needs to rest in day.

6: Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall functioning 70%
to 90%. Unable to work full time in jobs requiring physical labour (including just standing), but able
to work full time in light activity (sitting) if hours flexible.

5: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity; overall activity

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level reduced to 70% of expected. Unable to perform strenuous duties, but able to perform light duty
or desk work 4-5 hours a day, but requires rest periods. Has to rest/sleep 1-2 hours daily.

4: Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity. Overall activity
level reduced to 50-70% of expected. Able to go out once or twice a week. Unable to perform
strenuous duties. Able to work sitting down at home 3-4 hours a day, but requires rest periods.

3: Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall activity level
reduced to 50% of expected. Usually confined to house. Unable to perform any strenuous tasks. Able
to perform desk work 2-3 hours a day, but requires rest periods.

2: Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall activity 30-50%
of expected. Unable to leave house except rarely. Confined to bed most of day. Unable to concentrate
for more than 1 hour a day.

1: Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the house. Marked
cognitive symptoms preventing concentration.

0: Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.

Laboratory Method
In order to gain a full biochemical picture of mitochondrial function, a series of tests were done. There are
three parts to these tests which measure firstly the amount of ATP and how well it releases its energy (a
magnesium dependent process), secondly the rate at which ATP is recycled by oxidative phosphorylation and
thirdly the efficiency with which ATP and ADP cross mitochondrial membranes – this is a function of
translocator protein, The test procedures have been marked (A), (B) and (C) and the individual results have
been numbered 1 to 9. This identification is used throughout the following explanation of the test.

A. ATP Whole cells


With excess magnesium added (1) mmol/106 cellsref range (1.6-2.9)
(standard method of measuring ATP)
Endogenous magnesium only (2) mmol/106 cells ref range (0.9-2.7)
(measured ATP result is lowered during intracellular magnesium deficiency)
Ratio ATP/ATPMg (3) ref range (>0.65)

ATP is measured using photon (light) output during a reaction that uses ATP. The measurements are usually
made in the presence of excess magnesium which is required for ATP reactions.
(1) is the result with excess magnesium added in the laboratory.
(2) is the result when the magnesium source is that already present in the neutrophils. In theory, (1) and
(2) should be identical, but in practice that is never the case. However a significantly lower (2) than
(1) would reflect a deficiency of ATP-related magnesium. That might amplify the problems associated
with a low ATP, low result (1), or be the reason for poor availability of energy from ATP. The
ATP:ATPMg ratio (2)/(1) should be better that 0.65 which gives result (3).

B. ADP to ATP conversion efficiency (whole cells):


ATPMg (from above) (1) mmol/106 cells ref range (1.6-2.9)
Mg
ATP (inhibitor present) (4) mmol/106 cells ref range (<0.3)
Mg
ATP (inhibitor removed) (5) mmol/106 cells ref range (>1.4)

ADP to ATP conversion efficiency [(3-2)/(1-2)] x 100= (6) % (>60)

ADP to ATP conversion is inhibited in the laboratory, ATP is then rapidly used up and this would be shown in
result (4). If this does not occur it identifies a defect in the hydrolysis of ATP to ADP as the energy restricting
step.

When the laboratory-added inhibitor is removed the mitochondria should rapidly replete the ATP supply (from

155
ADP). This is shown by result (5). This mechanism can be blocked or partially blocked by toxic chemicals
(environmental pollutants etc) and an identified block in this repletion mechanism should be investigated
accordingly. The efficiency of this conversion can be calculated as result (6)

C. ADP-ATP Translocator protein function (mitochondria, not whole cells):


ATP Ref Range Change %
(pmol/106 cells)
Start (7) 290-700
TL OUT (8) 410-950 >35% increase (ATP out of mitochondria)
TL IN (9) 140-330 >55% decrease (ADP into mitochondria)

The specialised translocator protein (of approximate molecular weight 31kD) in the mitochondrial membrane
switches a single binding site between two states. In one of these ADP is recovered from the cytosol and
transferred into the mitochondria for reconversion to ATP. In the second mode, the ATP created in the
mitochondria is returned to the cytosol as its major energy source. The translocator (TL) responds to metabolic
changes, including pH change, that dictate whichever function is necessary to maintain an adequate supply of
ATP from the mitochondria into the cytosol. These feedback mechanisms include changes in the cation pumps
and alterations in intracellular calcium and calcium binding characteristics. The reactions themselves are, for
the most part, magnesium dependent.

The mitochondria are isolated by “trapping” the translocator (TL) on an affinity chromatography medium.
Here, the mitochondrial ATP can be measured (7). The translocator (TL) is then strongly biased towards
scavenging ADP to “feed” the mitochondria. Ten minutes of this should increase mitochondrial ATP by at least
35%, result (8). Then the translocator protein is strongly biased away from ADP pickup and towards ATP
dispersal into the cytosol. Ten minutes of this should deplete mitochondrial ATP by at least 55%, result (9).

Calculation of the Mitochondrial Energy Scores


Supply of ATP to cells is dependent on five parameters, each of which can be ascertained from the
mitochondrial function test namely:
The total amount of ATP available (1)
How efficiently energy is released from ATP (a magnesium dependent process) (3)
How efficiently ATP is made from ADP (6)
How well ADP-ATP translocator protein functions OUT (8)
And IN (9)

For the purposes of a score, all these parameters are taken into account. Each one is scored relative to the
lowest limit of the normal range. The highest limit of the normal range has been estimated from the best score
seen on all tests so far. Below is a worked example:

ATP Ratio ATP Conversion Translocator Translocator Mitochondrial


Whole cell To ATPMg Efficiency OUT IN Energy
1.6-2.9 (1) >0.65 (3) >60% (6) >35% (8) >55% (9) Score
High 2.9 80 90 50 80 6.87
Normal Ratio 1.81 Ratio 1.33 Ratio 1.5 Ratio 1.42 Ratio 1.45
Low 1.6 0.65 60 35 55 1.00
Normal Ratio 1.0 Ratio 1.0 Ratio 1.0 Ratio 1.0 Ratio 1.0
CFS 1.35 0.68 72.8 13.3 28.5 0.20
Subject Ratio 0.84 Ratio 1.05 Ratio 1.21 Ratio 0.38 Ratio 0.51
example

In this CFS example, this subject has a mitochondrial energy score of 0.20, that is to say his mitochondria are
functioning at 20% of the level compared to the lowest end of the normal range, or 2.9% of the level compared
to the top end of the normal range.

156
The full results of all 71 subjects
All results are given as percentages of the lower limit of normal:
No Sex Age Ability ATP ATP Oxid TL TL Mito
Ratio Phos OUT IN Energy
(1) (3) (6) (8) (9) Score

1 F 14 3 0.80 0.70 1.51 0.74 1.01 0.63


2 F 55 3 0.8 1.18 0.61 1.14 0.98 0.64
3 F 32 2 1.18 0.56 0.15 0.97 0.2 0.02
4 F 53 7 0.93 0.72 1.3 0.77 1.37 0.91
5 F 48 4 1.18 1.13 0.46 1.1 1.05 0.7
6 M 44 1 0.68 0.98 0.33 0.34 0.98 0.07
7 F 22 3 0.8 0.7 0.71 1.41 1.1 0.62
9 F 48 5 1.28 1.03 0.55 1.17 1.3 1.1
10 F 54 3 0.82 1.06 1.36 0.68 0.51 0.4
14 M 45 6 0.81 0.81 1.2 0.71 1.2 0.67
17 F 75 4 0.81 1.3 1.35 0.34 0.45 0.21
19 F 56 7 1.12 0.6 1.45 1.08 1.01 1.06
20 M 47 2 0.84 1.04 1.2 0.54 0.32 0.18
21 M 23 3 0.56 1.03 1.28 0.82 1.10 0.66
22 F 54 4 0.81 0.83 1.38 0.6 1.47 0.81
25 F 38 2 0.7 0.96 1.38 0.22 0.67 0.136
26 F 59 5 1.18 0.49 1.36 0.8 1.4 0.88
28 F 68 3 0.95 0.93 0.8 1.02 1.01 0.72
29 F 39 4 1.06 0.83 0.76 0.88 1.2 0.70
30 M 20 2 0.87 1.12 1.38 0.51 0.38 0.26
31 M 81 4 0.76 0.67 1.6 0.45 1.07 0.39
32 F 39 2 0.81 1.0 1.16 0.71 0.87 0.58
33 M 21 2 0.81 1.3 0.41 1.11 1.01 0.48
34 F 45 2 0.57 0.98 1.03 0.8 0.85 0.39
35 F 47 4 1.1 0.89 1.2 0.62 1.5 1.09
37 F 50 6 0.87 0.87 1.3 0.84 1.2 0.99
38 M 86 4 1.18 1.04 0.83 1.05 0.21 0.22
39 F 18 6 0.87 1.2 0.68 1.02 1.4 1.01
40 F 47 4 1.12 0.5 1.08 1.08 1.16 0.75
41 F 26 1 0.9 1.03 0.13 1.05 1.05 0.132
42 F 41 2 0.86 0.86 1.5 0.28 1.0 0.31
45 F 29 3 0.83 0.83 0.65 1.05 0.8 0.37
46 F 38 3 0.91 1.03 0.66 0.56 1.01 0.34
48 F 38 2 1.18 0.53 0.73 0.39 1.5 0.26
50 F 52 0 0.79 0.90 1.47 0.49 0.13 0.06
51 F 59 4 0.9 0.9 1.28 1.1 0.74 0.84
53 M 59 5 1.0 0.69 0.93 1.06 1.08 0.73
54 F 67 3 0.86 0.61 1.13 0.6 1.05 0.37
55 F 30 5 1.16 0.56 1.12 1.2 1.08 0.94
56 F 56 7 1.13 0.93 1.44 0.82 1.52 1.88
57 M 74 3 1.07 0.78 0.63 0.71 1.22 0.45
61 F 46 3 0.79 0.7 0.86 1.05 0.3 0.14
62 F 54 2 1.01 0.87 0.71 0.47 0.67 0.19
63 M 56 3 0.75 0.96 0.45 1.05 0.16 0.05

157
64 M 71 2 1.26 0.5 0.48 0.57 0.45 0.08
66 F 38 2 0.83 1.15 0.3 1.02 0.17 0.049
67 F 46 5 1.04 0.76 0.71 1.08 1.07 0.64
68 F 44 4 0.8 0.9 1.18 1.11 1.05 0.99
69 F 52 5 1.2 1.03 0.76 1.08 0.7 0.71
71 F 35 3 0.81 0.7 0.83 0.74 1.0 0.34
72 F 45 2 0.95 0.93 0.75 1.08 0.21 0.15
75 F 51 2 0.79 0.7 0.63 0.62 0.34 0.07
78 F 32 2 0.9 0.93 0.46 1.02 0.12 0.05
79 F 59 3 0.88 0.89 0.85 0.62 0.88 0.36
80 F 54 2 0.8 0.92 0.33 0.52 0.13 0.02
83 F 48 3 0.93 0.96 0.66 1.08 0.89 0.56
84 F 42 2 0.79 0.93 0.55 0.28 1.2 0.13
86 M 47 3 0.93 0.9 0.71 1.05 0.27 0.17
87 F 65 5 1.2 0.6 1.18 1.05 1.1 0.98
91 M 32 1 0.8 0.76 0.33 0.65 0.16 0.02
92 M 65 3 0.87 0.9 0.45 0.2 0.81 0.06
94 F 71 4 0.86 0.84 0.75 1.08 1.03 0.60
97 M 48 2 0.95 1.08 0.54 1.08 0.32 0.19
98 F 56 2 0.89 0.89 0.76 0.48 0.8 0.23
99 F 60 3 1.13 0.9 0.9 0.8 1.03 0.75
101 F 58 2 0.98 0.84 1.03 0.85 0.16 0.11
110 F 56 3 1.23 1.04 0.51 0.25 0.23 0.04
111 F 69 3 1.11 1.04 0.71 0.68 0.7 0.39
113 F 40 2 1.0 1.06 0.43 0.37 0.16 0.03
114 F 33 4 0.86 0.92 0.85 0.42 1.01 0.28
116 M 58 3 0.91 0.87 0.8 0.65 0.8 0.32

Results
The patient numbers are not consecutive either because not all the patients attending the CFS clinic had CFS
according to the Fukodo criteria, or because some patients had the test done before they were seen clinically.

The results are graphed. This graphs the level of disability to the nearest (column 4) against the mitochondrial
energy score (column 10).

158
Graph of Disability Scores against Mito Energy Scores

8
y = 3.2217x + 1.7576

6
Disability Score

5
Series1
Linear (S
4

0
0 0.2 0.4 0.6 0.8 1 1.2 1.4 1.6 1.8 2
Mito Energy Score

Least squares linear regression was used to analyse the correlation between the observed ability scores and the
computed energy scores. The correlation coefficient, r, was calculated as 0.803 which represents a strong
positive correlation (r = +1 represents perfect positive correlation, r = 0 represents no correlation and r = -1
represents perfect negative correlation). This implies that 64.4% of the variation in the observed ability scores
arises as a direct result of the variation in the computed mitochondrial energy scores.

The Null Hypothesis H0 : r = 0 was tested against the one-sided Alternative Hypothesis H 1 : r > 0 using both
Student’s t – distribution and the F- distribution (making use of Analysis of Variance – ANOVA –
techniques).The Null Hypothesis was rejected at 99.9% (Student’s t- distribution) and at 99% (F-
distribution).

The line of best fit between y (the observed disability indices) and x (the computed mitochondrial energy
scores) is y = 3.2217x + 1.7576

So, with p-values, p < 0.001 (Student’s t – distribution) and p < 0.01 (F-distribution), we can conclude that
there is a strong positive correlation between the observed ability scores and the computed mitochondrial
energy scores.

Discussion
These results support the hypothesis that one major cause of CFS is mitochondrial failure. Because
mitochondria are a common biological unit, then it is likely that mitochondrial function in neutrophils will
reflect mitochondrial function in other cells. The biochemical lesions result from several possible mechanisms
many of which can be tackled by appropriate nutritional interventions. Clinical experience has demonstrated
the value of the following interventions with the following biochemical lesions:

Poor levels of ATP can be corrected with D-ribose up to 15 grams daily.

159
Poor magnesium status can be corrected with oral magnesium supplements or possibly parenteral magnesium,
50mgs daily.
Slow oxidative phosphorylation can be tackled with supplements of co enzyme Q 10 (up to 300mgs daily),
acetyl L carnitine (2 grams daily), vitamin B 3 (niacinamide 500mgs daily).
Translocator protein function can be improved by doing detoxification sweating regimes to reduce xenobiotic
load. This is because translocator protein is often blocked by toxins such as heavy metals, volatile organic
compounds or pesticides. It is also sensitive to pH changes.
When mitochondrial function is impaired there is likely to be excessive production of free radicals which cause
further damage. This can be limited by attention to antioxidant status with respect to high dose parenteral B12,
correcting coenzyme Q 10 levels, correcting levels of glutathione peroxidase, correcting levels of superoxide
dismutase.
Mitochondrial function is also hormone sensitive and so there is a need to ensure optimum hormonal
environment with respect to thyroid and adrenal dysfunction and possibly others.

Indeed many of the authors of this study have started on the necessary regimes and nutritional supplements to
correct mitochondrial function and have seen clinical improvements with improved stamina, shortened
recovery time when they have over-exerted themselves beyond their expected activity levels and reduced levels
of symptoms.

It is very likely there are many ways in which mitochondria can be functionally impaired or damaged such as
immune activation in infectious disease, autoimmunity, allergic reactions (to foods, inhalants or chemicals),
syndrome X with insulin resistance as well as neurological damage, major organ failures and possibly even
psychological mechanisms. These are all areas which require further research.

Conclusion
The important thing to remember about chronic fatigue syndrome is that it is not a diagnosis, but a symptom.
Obviously chronic fatigue syndrome can occur for standard medically identifiable reasons such as major
organs failures (anaemia, heart failure, respiratory failure, cancer), lack of sleep, hormonal failures (thyroid,
adrenal, pituitary etc), starvation (which may be macronutrient or micronutrient) or simply “over-training
syndrome”. However when these obvious problems have been excluded, mitochondrial failure due to
functional impairment from toxic stress or micronutrient deficiency is likely to explain a great many cases of
chronic fatigue syndrome.

Therefore we now have an objective test for chronic fatigue syndrome which also indicates the site of the
biochemical lesion, its severity and most importantly gives a clear direction to treatment.

Mr Craig Robinson, Convenor of citizens’ paper, March 2006


E mail hunterjames25@tiscali.co.uk

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