What is chronic fatigue syndrome?

• Severe, long-lasting (more than 6 months)

A brief introduction to fatigue for which there is no underlying
chronic fatigue syndrome medical explanation or cause
• Other symptoms are usually present
• Diagnosed with reference to the symptoms
FINE trial therapists induction day – there is no test
• Several sets of diagnostic criteria exist
(FINE is using Oxford criteria)

What do we know about fatigue?

• Everyone has experienced fatigue – it
is a very common symptom
• Like blood pressure or weight, it is not
something you have or don’t have –
fatigue lies on a continuum
• We usually have a good idea what
caused it and what to do to get rid of it
• Fatigue can’t be measured directly – it is a
subjective symptom
• But subjective doesn’t mean “not real”
• Often subjective fatigue is related to
changes in performance (e.g. a runner who
feels tired and runs more slowly)
• But the relationship between the subjective
and the objectively measurable is not 1:1

Reasons for fatigue Why do women get tired?

• Associated with many medical conditions Stewart et al. 1998 - open-ended questionnaires
e.g. cancer, rheumatoid arthritis fatigue commonly cited symptom (27.5%)
• Social reasons – e.g. too much work or • Home/work 63.4 • Emotional probs 17.9
stress • sleep problems 38.2 • caring for others 13.8
• no time for self 34.1 • lack of support 9.8
• Psychological reasons – being bored,
• lack of exercise 32.5 • physical health 8.9
upset or overloaded with things to think
• financial probs 28.5 • child care 3.3
about
• relationships 22.0 • gender bias 2.4

1

What is different about the fatigue in
chronic fatigue syndrome?
• It has no medical or other explanation
• It is very severe, chronic, and doesn’t get better
with normal management such as rest or
getting out of the fatiguing situation
• It is often accompanied by other symptoms
such as muscle and joint aches and pains, sleep
problems, concentration problems, headaches,
flu-like symptoms.
• It is very disabling
How can you be ill if there is no
underlying cause?
• Distinction between disease and illness
• People often have disease without illness (e.g. an
ulcer with no symptoms)
• People with CFS are ill but have no obvious
underlying disease cause
• There may be measurable changes which are
thought to arise as a consequence of the illness
• Medically unexplained symptoms and syndromes
are actually very common

How ill are people with CFS? Who gets CFS?

• Komaroff et al (1996) Am J Med;101:281-9
• CFS patients more functionally impaired
than patients who had recently had a heart
attack, who had diabetes or high blood
pressure.
• CFS patients more emotionally distressed
and impaired than all patients except
depressed patients (c.f. MS, diabetes, MI,
CHF etc)
• CFS has often been associated with
professional classes, middle aged people
and women (hence name “yuppie flu”)
• It is true that in community surveys women
are more fatigued than men, but fatigue is
more common in lower social classes

Health & Lifestyle survey

Cox et al., 1987 • Middle class people may be more likely to
– find their fatigue puzzling,
Percentage of people feeling tired all the time during the – attribute it to an illness cause rather than
previous month another cause (e.g. social)
Female male – consult a doctor about it
Professional, managers 27.0 17.9 – to insist on referral, diagnosis etc.

Other non-manual 29.1 17.8 • The higher rate of fatigue in women is in

common with many other non-specific
Skilled manual 29.2 18.6
symptoms
Semi- and un-skilled manual 33.8 22.0

2
 From Euba et al., 1996, Br J Psychiatry, Chronic fatigue and chronic fatigue
168:121-6
syndrome
People with a diagnosis of CFS • Fatigue is a very common reason for
Hospital GP consulting a GP
% women 82 68 • In one recent study, only a third of people
consulting their GPs with fatigue fulfilled
% social class 1 36 3
criteria for CFS (Darbishire et al., 2003)
Previous psychiatric 21 74 • CFS at the extreme end of the continuum
from fatigue to chronic fatigue to CFS?
Psychological 7 58
attribution

Prognosis of CFS – does it get

How many people have CFS?
• Prevalence depends on diagnostic criteria
used, and who is sampled (population in
general, people visiting GPs etc.), and how.
– 1988 CDC criteria retrospectively applied,
community sample 0.01% (Price et al., 1992)
– British criteria, UK postal survey, 0.6% (Lawrie
et al., 1995)
– Fukuda criteria, UK primary care, 2.6%
better, and if so after how long?
• Untreated, prognosis for adults is poor
• 54-94% children recover over several years
• Adults with CFS by case criteria - 10%
recover fully in 3 years
• Adults with CF (not CFS) 40% recover
• Joyce et al., 1997, Q J Med;90:223-233

CFS and other medically

unexplained conditions
• CFS patients have elevated life-time and
current rates of
• irritable bowel syndrome
• food intolerance and multiple chemical
sensitivity
• fibromyalgia
• these conditions are all symptomatically
defined, share common key symptoms
Aaron & Buchwald (2001) Ann Int Med;134(2)S:868-81
What causes CFS?
• Lots of hypotheses over the years
• Persisting viral infection? Muscle damage?
• Some people develop CFS after a viral
infection but develop after another illness or
no illness
• Sometimes comes on suddenly, sometimes
gradually
• Multi-factorial explanations

3

Why do patients feel so ill?
• Symptoms are real not imaginary
• Although underlying disease processes have
been ruled out, there are physiological
changes which come about as the result of
disturbed rest-activity cycles, disturbed
sleep, somatic symptoms of anxiety
• physiological and psychological factors
interact
Maintaining factors
• Physiological
• Cognitive
• Behavioural
• Social and emotional
• The four types of maintaining factors all
interact – e.g. beliefs affect behaviour,
behaviour affects physiology etc.
Cognitive maintaining factors
• fear of activity doing damage –
(catastrophic beliefs)
• focusing on symptoms - hypervigilance -
leads to increased arousal
• feeling out of control
Precipitating & maintaining factors
• Researchers and practitioners have found it
useful to distinguish between the factors which
precipitate CFS, e.g.
– trauma,
– infection,
– overwork,
– “stress”
• and those which maintain it.
Physiological dysregulation
• There is a lot of work on the harmful effects
of excessive rest on healthy people
– Cardiovascular deconditioning
– reduced exercise tolerance
– muscle pain (may be delayed) on activity
– weakness, dizziness, postural hypotension
– changes to body temperature regulation
– loss of concentration and motivation
Behavioural maintaining factors
• avoiding activity altogether
• doing activity in bursts
• sleeping at irregular times
• excessive resting
4

Social and emotional factors
• Social
– feeling disbelieved
– illness behaviour reinforced by others (e.g.
some support groups
– unhelpful advice (e.g. to rest excessively)
• Emotional
– demoralisation, depression, frustration
Which are the effective treatments?
• Recent systematic review of treatments for CFS
by Whiting et al., (2001), JAMA,286:1360-8
• GET, CBT and PR all effective
• Counselling also shown to be an effective
treatment in a primary care study
• hydrocortisone and immunoglobulin (?
beneficial - inconclusive)
• extent of effectiveness - complete return to
normal, improvement - outcome measures?
CFS and ME
• ME (short for myalgic encephalomyelitis).
• There are widely differing views on the
relationship between CFS and ME
• The “London criteria” for ME, as written by
the “UK Patient Organisations (1993)” are
described in the National Task Force report
(1994).
What can be done about it?
• Pharmacological & immunological treatments
– antidepressants
– hydrocortisone
– anti-viral/anti-histamine/immunoglobulin
• Behavioural, cognitive-behavioural & counselling
– graded exercise therapy
– cognitive behaviour therapy
– guided self help including elements of above (pragmatic
rehabilitation)
– counselling
Patient, public and professional
perceptions of CFS/ME
FINE trial therapists’ induction 2
The London criteria for ME
• Exercise-induced fatigue precipitated by trivially
small exertion (physical or mental) relative to the
patient’s previous exercise intolerance.
• Impairment of short-term memory and loss of
powers of concentration, usually coupled with other
neurological and psychological disturbances such as
emotional lability, nominal dysphasia, disturbed
sleep patterns, dysequilibrium or tinnitus.
• Fluctuations of symptoms, usually precipitated by
either physical or mental exercise.
• These symptoms should have been present for at
least 6 months and should be ongoing.
5
• Many health professionals believe that CFS and
ME are essentially the same condition
• Some (but not all) patients believe that ME is a
different condition
• Belief in the diagnosis of ME as opposed to CFS
is often associated with a firm belief in an
underlying disease process (e.g. persistent viral
infection, neurological damage, immunological
impairment)
• Physical symptoms for which there is no
“Please see this patient with ME.
There is nothing wrong with her.”
• Seen as “all in the mind” and often as a sign of
(from Wilkie & Wessely, Br J Hosp Med, 1994;51:421-7)
• Symptoms not taken as seriously
What it’s like to have CFS/ME
• Experience many severe, chronic,
unpleasant, disabling symptoms
• Feeling misunderstood by doctors
• Fear that something is being missed
• Not a legitimate illness
• A large proportion of patients with CFS/ME
are also depressed or anxious or both
• Because there is no test for CFS and usually
nothing visible (except behavioural
changes) many people, doctors and public
alike, “don’t believe in it.”
• What does “not believing in it” mean?
The social status of “medically
unexplained” illness
obvious disease process are thought to be less
real than the same symptoms which can be
attributed to an observable disease process
weakness
What patients believe about
CFS/ME
• Most aren’t sure how it started, but after
being ill for so long without an explanation,
search for possible causes.
• Many patients experience the illness as
entirely physical, but believe that stress may
have played a role in precipitating it
• Many patients are afraid that if they do not
rest they will do themselves further damage
(Clements et al., 1997)
6
 The consequences of these beliefs
• There is some evidence that patients who
have a firm conviction in a physical illness
do less well than those who are more open
in their beliefs about the illness
• However, a belief in a physical cause may
make a patient feel less personally
responsible for the illness and therefore less
distressed
The role of support
• Personal and social support is usually
helpful for people who are ill
• In the case of CFS/ME, there is some
evidence that being a member of an ME
support group is associated with poorer
engagement in treatment and/or worse
outcome
Chronic fatigue syndrome –
levels of explanation
FINE trial therapists’ induction 3
The role of diagnosis
• Some (not all) doctors feel uncomfortable
making a diagnosis which doesn’t provide a
medical explanation for the symptoms, and
which may turn into a “self-fulfilling prophecy”
• Patients, however, are usually very relieved to
receive a diagnosis as this recognises and
legitimises their suffering
(Woodward, Broom & Legge, 1995)
The politics of CFS/ME
• CFS/ME is an extraordinarily controversial
condition that has attracted a lot of media
and other interest
• The role of ME activists
• Relations between ME organisations and
professionals working in the field.
• Minds and bodies
• Levels of explanation
• CFS and depression
7
• We have seen that the fatigue of CFS is, by
definition, without medical explanation
• This means that there is no known underlying
pathology or disease process, although there may
be disturbances in functioning or regulation of
various bodily systems
• It is often difficult to know whether changes in
bodily functions (e.g. muscle weakness) are a
cause or consequence of the condition
The biopsychosocial model
• Usually attributed to Engel (1977; 1980)
• An attempt to integrate biological,
psychological and social models of health
and illness, and to recognise the importance
of each of the different sets of factors in all
illnesses
Levels of explanation for a
“mental” illness - depression
• Biological - disturbed neurotransmitter
function - pharmacological treatment
• Psychological - depressive cognitions -
psychological treatment
• Social - social conditions - social and
political responses
• We have also seen that this lack of a
medical explanation poses problems for
some patients
• In our society, there is a tendency to see
illnesses as either physical or psychological,
either in the body or in the mind
• I want to suggest that this distinction is not
always very helpful
Levels of explanation and a
“physical” illness
• To understand tuberculosis, need to know
about:
– the tubercle bacillus
– behaviours and emotions which increase
risk/susceptibility to infection, and which are
associated with a worse illness course
– social factors (e.g. over-crowded housing)
The acceptability of explanations
• Framing depression in terms of disturbed brain
chemistry makes it more acceptable to sufferers
than when it is described in terms of
dysfunctional cognitive styles
• Biological explanations are seen as more
fundamental, more real than psychological.
8

Explanations and emotions
• Biological factors are seen as less within the
patient’s control, so patients feel less
responsible and that their illness is more
legitimate
• Psychological factors are seen as more
within a patients control and more
“blameworthy”
• Attribution theory in psychology
• Sometime psychological explanations for
aspects of illness can add to our understanding
of conditions for which there is a well
understood disease process (e.g. rheumatoid
arthritis)
• Sometimes psychological (or social or political)
explanations for aspects of illness are more
developed than biological (e.g. in the case of
illness with no clear medical explanation).
• The existence of one level of explanation does
not make another level wrong; it is not either/or!
• Patient understanding of the condition in
terms of physiological dysregulation
changes beliefs about the controllability,
expected time line etc of the illness.
• Change in beliefs may lead to change in
behaviour, and change in behaviour leads to
change in physiology (eg increasing fitness)
How do different levels of
explanation map onto each other?
• Often the answer to this question is not clear,
e.g. it is not easy or even possible to see how
psychological events map on to physical events
• Do we need to be able to answer this question
to accept the “levels of explanation” approach
as useful?
• Sometimes we can see which level of
explanation has the most explanatory power
Levels of explanation for CFS
• Physical:
– Cardiovascular and muscular deconditioning
– Disturbed HPA function – low cortisol
• Psychological:
– Illness cognitions and beliefs about symptoms
– The role of depression
CFS & depression
• 40-70% CFS patients in specialist clinics
have a diagnosable psychiatric disorder,
mainly depression, also anxiety disorders
(David, 1991, Br Med Bull, 47:966-88)
• “…the statement that [a CFS patient] has a
depressive illness is merely a statement
about their symptoms. It has no causal
implications.” Kendell, 1991, Lancet.
9
 Do people become depressed or
distressed as a result of CFS?
Relative
• What are the possible reasons for the strong Control group CFS Controls risk
Wessely & Neuro-muscular 72 36 2.0
association between chronic fatigue and Powell 1989 D
psychiatric disorders, especially depression? Katon et al. Rheumatoid Arthritis 45 6 7.5
1991 P
Wood et al. Myopathy 41 12.5 3.3
1991 P
Pepper et al. MS 23 8 2.9
1993 P
Fischler et al. ENT & 77 50 3.4
1997 A Dermatology
Johnson et al. MS 45 16 2.8
1996 D

Are high rates of depression in Differences in psychological

CFS an artefact of diagnosis?
• Fatigue is a diagnostic symptom of
depression
• Sleep disturbance common to CFS and
depression
• If discount fatigue/sleep problems in the
diagnosis of depression, still have elevated
rates in CFS patients
(Wessely & Powell, 1989)
symptoms in CFS and depression
• Powell et al 1990 showed that people with CFS
who are depressed tend to attribute their
symptoms to external causes and have higher self-
esteem, less guilt than people with primary
depression
• Moss-Morris & Petrie (2001) replicated and
extended these findings and showed that specific
CFS-related cognitions were associated with
fatigue and disability 6 months later

Endocrinological changes in CFS Neuroendocrinological changes

- cortisol
• Cortisol - stress hormone - usually elevated
in patients with depression; plasma and
salivary cortisol at LOW levels in patients
with CFS.
• Cause or effect? Low plasma cortisol levels
could derive from disturbed sleep and low
activity levels
• Link with non-specific immune activation?
in CFS - serotonin
• Serotonin - 5HT - neurotransmitter
• involved in regulation of hypothalamic
functions - link with low cortisol levels?
• Tests of 5HT reactivity suggest different
responses in patients with primary diagnosis
of depression and patients with CFS
• CFS larger 5HT response to challenge test
Parker et al., 2001, review of neuroendocrinology of CFS

10
• So CFS and depression overlap
• On a psychological level they have many
features in common, but also some
differences
• Some physiological changes commonly
seen in depression are not seen in CFS and
vice versa
• Antidepressant medication is not generally
regarded as very effective for CFS
Contents of session
• What pragmatic rehabilitation is
• Presenting the rationale for PR to patients
• The evidence for effectiveness of PR to date
• Why does the therapy work?
• How are we going to measure change in the
FINE trial – outcome measures
What is pragmatic rehabilitation?
• What are the essential features of the PR
treatment approach?
• What model of CFS/ME is embodied in the
PR approach?
• How is PR similar to and different from
other treatment approaches? How is PR
similar to and different from other treatment
approaches?
Pragmatic rehabilitation training
session 1
What you should get out of the
session
• You should develop a clearer understanding
of what PR is and what it is not
• You should be able to pick out the essential
features of the approach
• You should be familiar with evidence for its
effectiveness
• You should be starting to think about what
might make PR an effective treatment.
The main components of PR
• Presenting the rationale to patients in a
convincing way
• Helping patients to devise their own plan
for rehabilitation
• Helping patients to stick to the plan
• Reassurance, support and encouragement
11

Main aspects of the rationale
• Muscle and cardiovascular deconditioning
• Sleep and circadian rhythm disturbance
• Cortisol
• Stress, anxiety and arousal
The patient presentation – giving the
rationale for PR
• Pauline Powell devised this to be given in a
standard format.
• During training, you will:
– See the presentation given
– Learn the presentation
– Practice giving the presentation
– Learn about the research supporting the
presentation
The effectiveness of the pragmatic
rehabilitation approach
• How to evaluate effectiveness of
intervention? What to compare it with?
• Which outcomes to measure?
• Over what period of time is intervention
effective?
Main features of the rehabilitation
programme
• Must be acceptable and feasible to patient –
so collaborate with the patient to set goals
and activity levels
• Huge emphasis on starting at a level
LOWER THAN CAN CURRENTLY BE
MANAGED and building up gradually
• Helping patients to understand that
experiencing symptoms does not mean
damage is being done
Starting to think about giving the
patient presentation
• What are your first impressions?
• How do you think it might be experienced
by patients?
• Strengths of the presentation?
• Any problems which are immediately
apparent?
First trial of PR – Powell et al., 2001
• Patients fulfilling Oxford criteria for CFS
• Hospital clinic
• Randomised to:
– 2 face to face sessions plus 2 phone calls
– 2 face to face sessions plus 9 phone calls
– 9 face to face sessions plus 2 phone calls
– Standard medical care with non-PR booklet
12
 Results
• On measures of both fatigue and physical
functioning, one year after randomisation, all
three intervention groups made significantly
greater improvements than the control group
• Patients meeting criteria for clinically important
improvement:
Group 2+2 26/37 improved
Group 2+9 27/39 improved
Group 9+2 26/38 improved
Group SMC 2/34 improved
What about very severely affected
patients?
• Powell, Edwards and Bentall 1999 reported
on 2 wheel-chair bound patients.
• Both improved in terms of fatigue, ceased
to use wheelchairs and were able to lead
independent existences
• However, they received intensive treatment
(60 & 55 contacts), which we will not be
able to give in FINE trial
A reference
• A useful reference about randomised controlled
trials is
• Randomised controlled trial. A user’s guide. By
Aljandro R Jadad. Published by the BMJ, 1998,
can be read online at www.bmjpg.com/rct
Was improvement maintained?
• Powell et al 2004, followed patients up at 2
years
• In the meantime, patients in the SMC group had
been offered treatment.
• Original intervention patients maintained their
improvement
• Original SMC patients who were now treated
didn’t do as well as those treated immediately
Why so effective?
• Pragmatic rehabilitation as delivered by Pauline
Powell has therefore proved to be very effective.
• What might the mechanisms of action be? What
happens when people get better?
• What are the similarities and differences between
the previous trial of PR and the FINE trial?
• What effects might these similarities and
differences have?
Consolidating this week’s work
1. Re-read the patient presentation, think about
delivering it, and note down any questions you may
have about it, which you might want to raise at
subsequent training sessions.
2. Please each write for me, individually, a 500-word
position piece entitled “Pragmatic Rehabilitation
for CFS/ME: what it is and why it works.” Please
email to me and I will return it to you with
comments. Please reference fully (references don’t
count towards word-limit).
13
 Preparation for next week
• In preparation for observing the patient
presentation thoroughly read chapter 2 of the PR
therapist manual,.
• To prepare for the taught session read the abstracts
of the papers listed in the “deconditioning” section
of the reading list. If you have time, you can read
the full papers.
• When you read, always note any questions or
problems, and ASK about them at the next
session!
Contents of session
• What is deconditioning?
• What are the effects of deconditioning on:
Muscle function
Muscle pain
Effort during exercise
Circulation
Psychological functioning
• What does the patient experience and what
are the consequences?
• How might deconditioning be reversed?
What is deconditioning?
• How does deconditioning develop?
• How quickly does it develop?
• Who is at greatest risk?
• What patterns of inactivity are seen in CFS
patients leading to deconditioning?
• In what other conditions do we see
deconditioning?
Pragmatic rehabilitation training
session 2:
Deconditioning: the Physiology
What you may get out of the session
• You should develop a clearer understanding
of what deconditioning is and what it is not.
• You should understand and then learn the
physiological effects of inactivity.
• You should be familiar with evidence for
the physiological effects of inactivity.
• You should understand and interpret how
inactivity could lead to symptoms and other
consequences for the CFS patient.
• You should understand how deconditioning
may be reversed.
Effects of inactivity on muscles
• Reduced strength in 2-3 weeks, one month
bedrest (what ever the cause) leads to 10%
muscle wasting, 4 months muscle fibres
replaced by fat and non-muscle fibre.
• Bedrest followed by exercise leads to
lactate build-up, less efficient muscle
metabolism and greater risk of muscle pain
• Disuse of skeletal muscles working against
gravity with bed rest (back,neck, limbs)
• What is the patient likely to experience?
14
 Effects of inactivity in CFS
• Normal muscle force and physiology -
which papers show this?
• Muscle histopathology - all can be
explained by disuse and change from
aerobic to anaerobic muscle metabolism
(decreased mitochondria). Which papers
show this?
• Athletes with greater type 1 muscle more
quickly prone to deconditioning.
• No muscle dysfunction, disuse leads to
reversible muscle changes.
Increased sense of effort during
exercise
• In CFS, increased effort straight away with
exercise unlike healthy.
• Sensitive to skin & muscle tenderness
(sensory) & also feedback from muscle.
• Normally movement is automatic but CFS
patients consciously take over processes
that are automatic (fear of consequences).
• Lose balance, co-ordination, do not relax
antagonistic muscles.
• What are consequences for symptoms and
exercise tolerance?
Inactivity and Circulation cont.
• As a result - hypotension (low blood
pressure) on changing position (orthostatic)
- Increased heart rate on changing position
- Increased adrenaline/autonomic nerve
- Heart beats faster
- Excess stimulation of receptors monitoring
change in blood pressure in heart .
-Low heart rate, more venous pooling
-Neurally mediated hypotension.
Delayed muscle soreness
• Unaccustomed exercise can lead to
eccentric muscle tension - each muscle fibre
lengthens and produces higher tension than
normal contraction (muscle shortens).
• Uneven contraction leads to microtrauma at
muscle attachment to tendon with oedema
& tenderness, peak 48 hours later.
• How might physiology be related to CFS
symptoms?
• Which exercise is likely to do this and what
are implications for treatment?
Inactivity and Circulation
• Significant headward shift of body fluid
• Reduced plasma volume - blood returns
centrally leading to passing more urine
• Increased venous pooling in lower limbs
(lack of muscle pump from exercise)
• Decreased blood volume and red cell mass
so reduced oxygen carrying capacity
• Decreased responsiveness of receptors in
neck that monitor blood pressure when
changing posture.
Symptoms of Neurally Mediated
Hypotension
• What symptoms might low blood pressure
together with low energy metabolism (from
lack of muscle activity) cause?
• The increased activity of adrenaline
/autonomic nervous system has other
undesirable effects. What other symptoms
might be seen?
15
 Other consequences of
cardiovascular deconditioning
• In young healthy people, cardio decond.
starts after 4 days & 3 weeks of bedrest,
20% reduction in aerobic exercise capacity
takes 5-10 weeks of conditioning to recover.
• 3-4 weeks bedrest reduced diameter of heart
but heart still healthy in CFS so can recover.
• Reduced responsiveness of autonomic
nervous system in CFS, not permanent.
• Fit people lose aerobic work capacity with
inactivity more quickly
Psychological consequences of
deconditioning
• Isolation and confinement in fit subjects -
monotony of bed rest reduces central
nervous system function & increases stress.
• Sensory deprivation leads to decreased
alertness, decreased tolerance of
temperature regulation, inaccurate time
estimation, reduced muscle co-ordination
(making fine adjustments).
• Forced dependency, loss of self-worth, loss
of sources of emotional gratification.
Summary of the Mechanisms by
Inactivity Cause CFS symptoms
• Decreased muscle strength (atrophy)
generally & weight bearing muscles espec.
• Change to less efficient and less endurance
muscle function
• Decreased metabolism
• Delayed onset muscle soreness
• Increased sense of effort during exercise
• Neurally mediated hypotension
• Increased autonomic activity
• Sensory deprivation and emotional effects.
Therefore
• Inactivity due to bed rest/chair rest produces
real physical changes in the body in people
with CFS and in healthy people.
• None of the changes in the body produced
by inactivity in CFS are permanent or
indicate damage.
• Even after many years, the changes in the
body due to inactivity can be reversed
through gradual conditioning but they take
time.
Emotional consequences of
deconditioning
• Irritability, withdrawal, depression,
emotional lability, anxiety, stigma, shame,
dependency, childlike emotional outbursts,
increased or reduced help seeking.
• Emotional response to confinement depends
on degree of sensory deprivation,
personality, coping responses of individual,
limitation in activity and isolation.
• What are the implications for treatment?
Summary of Inactivity continued
• Effects of inactivity start within 4 days of
chair rest and are marked by 2-3 weeks.
• Inactivity affects previously physically fit
more severely and more quickly.
• Emotional and sensory deprivation effects
are worse in psychologically vulnerable,
more confined and isolated.
• All body changes in muscle and circulation
CFS appear to be due to inactivity.
• All are reversible with gradual increases of
aerobic conditioning over at least 3 months.
16
 Summary of Inactivity continued
• Are there any CFS symptoms not
explainable by inactivity? What are they?
• Do you find these explanations plausible?
• Imagine how the message that CFS is partly
caused by inactivity leading to real physical
and emotional changes but with effort these
can be reversed might sound to a CFS
patient. Is this helpful or are there unhelpful
aspects to this message?
Pragmatic rehabilitation training
session 3
Designing and carrying out
Conditioning/Graded Exercise
What you may get out of the session
• You should be able to identify patterns of
activity of CFS patients.
• You should be able to deliver a treatment
rationale for graded exercise.
• You should understand the principles of
devising a graded exercise programme
based on your understanding of
deconditioning.
• You should be able to overcome patient
fears about graded exercise and set goals.
• You should know how to approach
bedbound/chairbound CFS patients.
Consolidating this week’s work
1. Re-read pages 30-41 of the therapist’s manual.
Write out all the mechanisms that are covered and
how you would explain each one to a patient with
CFS. Identify the relevant sections of the patient
manual and check that your understanding fits with
the explanation in the manual.
2. Write down any questions you may have about the
mechanisms, which you might want to raise at
subsequent training sessions.
3. Learn your explanations in time for your first
practice patients
Contents of session
• Identifying activities of the CFS patients
• Fears of CFS Patients about Exercise
• Giving the treatment rationale for graded
exercise
• Designing the graded exercise programme
• Goal Setting
• Overcoming Fears of Exercise
• Reviewing Progress
• Trouble shooting problems
• Bed/wheelchair bound & other difficulties
Patterns of activity in CFS
• There are two main patterns of rest/activity
in CFS:
Avoidance
“Boom and Bust” - complete rest
followed by frantic activity to make up for
time lost through rest.
• Why would “Boom and Bust” not work?
• How would you establish their activity/rest
pattern?
17
 Fears about exercise in CFS
• Many CFS patients are fearful about
exercise through their own experience of
symptoms following exercise.
• It is no use denying their experience of
symptoms after exercise.
• Many patients believe that post-exertional
symptoms indicate they are harming their
body so they worry & limit their activity.
• Many delay exercise until post-exertional
symptoms wear off (“Boom-Bust”).
Why the thought of any activity
plan may worry CFS patients
• “Past experience may have told you that
activity worsens your symptoms”
• “You may have struggled with activity plans
and got nowhere with them”
• “You may not feel motivated -prolonged
activity increases fatigue when exercising”
• “You may have daily commitments that
need your limited energy”
Safest level of exercise to start
• Start activity at level less than capable of
• If activity = present stamina, difficult to do
activity plan & daily tasks, & become
overwhelmed by symptoms
• Like athletes do not expect full potential in
1st weeks of training- build up over months
• As stamina and fitness increase muscle pain
and fatigue will disappear
• Increases in daily activities should be timed
and gradually increased to sustain progress
Overcoming fears about exercise
• How might you go about this in someone
who is ambulatory with CFS?
• Think about the explanation you give.
• Think about the level and type of exercise
you give
• Think about the support they might need
Why is gradually increasing
activity plan important?
• There is no persistent virus, muscle disease
or damage
• Activity or exercise cannot harm
• Muscles need regular exercise to work
efficiently and without pain
• Periods of rest or irregular activity over
months & years leads to deconditioning
• Severity of CFS symptoms depends on
amount of regular activity since start of CFS
First experiences of activity plan
• An increase in physical symptoms may
occur - symptoms of deconditioning:
dizziness, breathlessness, sweating,
palpitations, fatigue, later muscle aches
• Thoughts about these symptoms important-
fear leads to extra symptoms (adrenaline)
• Increase in symptoms temporary and as
fitter, symptoms of deconditioning lift
• Rest in sitting position for 30 min after
exercise - why not rest lying down?
18
 Which exercise?
• Realistic and enjoyable
• Performed several times per day
• Performed every day
• Aerobic exercise to increase breathing &
heart rate: standing sessions, walking, stair
exercises, exercise bike, dancing, jogging,
• Depends on deconditioning & daily living
commitments
• Increase timing of activities in controlled
way
• CFS patients overestimate their fitness
Walking
• Walk at normal speed - balance lost when
walking very slowly
• Time amount of walking can do safely
• e.g. 15 seconds in house am and pm 1st day
• Next day 20 seconds am and pm
• Next day 25 seconds am and pm
• Increase 5 seconds am & pm per day, 1st
wk
• 2nd week increase 10 seconds am and pm
per day if confident.
• When confident increase 20 or 30 seconds
per session
Combination of Exercises
• Frequent stimulation of cardiovascular
system is very beneficial
• Some patients prefer to add walking,
dancing, jogging standing or stair exercise +
two daily exercise bike sessions.
• Take enough rest between activities.
Exercise Bike
• Most popular method- in control, at home,
all weathers
• 5 pedals am and pm
• Next day 10 pedals am and pm
• Next day 15 pedals am and pm
• Increase 5 pedals am & pm per day, 1st wk
• When 60 pedals am and pm, time & add 5
sec each session (+ 5 sec am, + 10 sec pm)
• 3rd week add 7 sec each session
• 4th week add 10 sec each session
• 5th week add 15 sec each session
• Add 5 sec per session - increase steadily
Stair Exercises
• Stair exercises stimulate the cardiovascular
system & working different sets of muscles.
• Not recommended for patients with knee
problems
• Add this to other aerobic activities, not stair
exercises on their own
• Start with climbing one stair am, pm
• Next day 2 stairs am and pm
• Next day 3 stairs am and pm etc
Advice from Recovered
• Get up at set time in morning (8-9 hrs sleep)
• Plan day before getting up
• Priortise tasks as necessary
• Decide essential tasks/reg aerobic activity
• Follow activity by restful relaxation in chair
• Balance rest and activity through the day
• Break down household activities into small
amounts
• Try not too rest too much on a bad day (a
gentle walk can help reduce symptoms)
19
 How much aerobic exercise?
• Number of aerobic exercise sessions
depends on each patient’s circumstances
• Aim 4 x 15 min aerobic sessions over day
• Then 2 x 30 sessions of differing exercises
• Swimming and aerobics can be added
• After symptomatic recovery 30 min of
enjoyable physical activity of moderate
intensity. Minimum of 3 times a week.
• Record progress in activity diary - focus on
achievement and symptoms will subside
When ill
• Infection with a temperature, reduce
exercise level so pottering around
• Avoid lying down to rest or sleeping in day.
• When temperature subsides, start activity
again at reduced amount
• e.g. if cycled for 3 min, start at 15 sec and
increase by 15 sec until reach 3 min and
then resume previous rate of increase
• e.g. if cycled for 10 min, start at 2 min and
increase by 1 min until reach 10 min, then
resume
Standing
• Not used to standing, muscle pumps in legs
idle - less blood returns to heart & brain
• What symptoms occur?
• Need to build up standing in those who are
non-ambulatory.
• Severely affected, hold onto chair for 5 sec
• Increase by 5 sec each day or am/pm
depending on deconditioning
• Use household activities involving standing
& increase duration in controlled manner
• Exercise once no symptoms with standing
What to do on a bad day
• Bad days with increased physical activity,
mental stress & infection
• Increase in physical or mental exertion will
increase autonomic nervous system/
adrenaline activity - overwhelming sx
• If possible on bad day do same amount as
day before but no more. No harm will occur
• After bad day, increase on next good day
• With time, break up activities with rest over
day so decrease in frequency of bad days
Working with non-ambulatory
• Set targets to match level of disability
• Lying flat in bed most of time, prop up with
a few pillows 5 min/2 hours, then increase.
• In bed move feet or hands in circular
motion 1-2x in 2 hours to increase strength
of weight-bearing muscles.
• Lift arms over head/legs over side of bed 5
sec every 2 hours
• Go to bathroom, spend few seconds sitting
over side of bed, out of bed or standing
• Dizziness, nausea, palpitations once head
above heart in those used to lying flat
Name benefits of exercise
• Effects on deconditioning symptoms
• Effects on accurate sensory information
• Effects on sleep
• Effects on hormones
• Effects on mood, anxiety, mental stress
• Effects on withstanding physical stress
• Effects on intellectual functioning
20
 Summary of Activity Plan
• Plan day balancing activity, rest, essential tasks,
relaxation - “do something little and often”
• Keep activity diary to keep to target activities
• Choose aerobic activity 2 x/day or more often
• Start level well below level of physical ability
• Increase activity in controlled gradual way
• On good days, do not do too much
• On bad days, try to do same as day before
• Symptoms may at first increase, keep to target
and symptoms will get less.
Consolidating this week’s work
1. Re-read the patient presentation and patient manual
about designing an activity plan , think about
delivering it, and note down any questions you may
have about it for subsequent training sessions.
2. Please design for me, individually, 3 activity plans:
1. Someone who potters in the house doing light
house work in short periods for 2 hours/day
2. Someone does as 1 same plus goes out to take
child to & from school, & shops in car 2 x/week
3. In bed all day except to wash/toilet, sits out to
read/eat with family once per day.
Pragmatic rehabilitation training
session 4
Sleep, body clock and cortisol
Summary of Activity Plan cont.
• Symptoms do not mean harm
• Tackle anxiety about exercise - anxiety increases
autonomic/adrenaline release increasing
symptoms
• If necessary start at lower level of activity
• Aim for 1 hour different aerobic exercise per
day, at first in divided activities, then 2 x 30 min
• Very severe, lie propped up for increasing time
with exercise in bed, then sit over side of bed,
then standing- at each stage dizziness, nausea,
palpitations
Preparation for next week
• To prepare for the taught session read the abstracts
of the papers listed in the “sleep, body clock,
cortisol and anxiety” sections of the reading list. If
you have time, you can read the full papers.
• When you read, always note any questions or
problems, and ASK about them at the next
session!
Contents of session
• Understanding biological rhythms and the
body clock
• Sleep-wake cycle
• Desynchronisation of body clock
• Evidence of desynchronisation of body
clock and sleep-wake cycle in CFS
• Cortisol and HPA axis
• Serotonin and noradrenaline
• Neuroendocrine abnormalities in CFS
• Immune system and CFS
21
What you may get out of the session
• You should understand the body clock and
biological rhythms such as sleep-wake cycle
• You should understand the concept of
circadian desynchronisation
• You should know the evidence for circadian
desynchronisation in CFS
• You should understand how the HPA axis
works & HPA dysfunction in CFS
• You should know about serotonin and
noradrenaline function in CFS
• You should know about the immune system
in relation to CFS
Synchronisation of body rhythms
• Without external cues, circadian rhythms
would run 25 (range 22-28) hours (most
people would sleep & get up later & later)
• External cues, called synchronisers or time
givers, keep circadian rhythm to 24 hours
• Synchronisers are light & dark, temperature,
clocks, TV, radio, & regular lifestyle e.g.
work, activity, meals, social
• Circadian rhythms include sleep-wake
cycle, alertness & tiredness, concentration,
eating,body temperature, HPA axis
• Primed in day, part shut down at night
Desynchronising body rhythms
• If external cues or synchronisers change,
body clock may become desynchronised
with normal 24 hour cycle
• Symptoms occur if body clock becomes
desynchronised with 24 hour cycle (“phase
shift” in peak & nadir activity in circadian
rhythms)
• Symptoms of desynchronisation of body
clock include: malaise, headaches, muscle
aches, concentration & alertness, loss of
appetite, bowel disturbance, fatigue in day,
inability to sleep and poor sleep at night
Biological rhythms & body clock
• Biological rhythms occur in everyone, over
24 hours (circadian) and over other time
periods e.g. 28 days in women.
• Daily rhythm such as sleep-wake cycle is
internally driven. What is evidence?
• However external factors e.g. light and dark
can also influence daily rhythms such as
sleep-wake cycle. Why?
• Body clock driving sleep-wake cycle
located in hypothalamus (SCN)
Alertness
• Brain is most alert in morning, late
afternoon & early evening
• Brain is least alert at night/early morning
and early afternoon (most accidents due to
driver sleepiness occur 2 am and 2pm)
• Most of us could easily fall asleep for
couple of hours 2-4pm. Most common time
for daytime nap in CFS
• Little evidence that sleep at these times
improves alertness and reduces fatigue later
in CFS patients or anyone else
Desynchronising body rhythms 2
• We can relate to desynchronisation of body
rhythms through jet lag & night shift work
• Not everyone experiences symptoms of
desynchronisation e.g. 1/3 not affected by
transatlantic flight, 1/3 badly affected
• Depends how well body clock readjusts -
strength of new synchronisers, personality
(neurotic, introverted worse), emotional
distress/mental disorder, “lark” or “owl”
• Temperature of lark (morning people) peak
earlier than owl- larks more affected by
sleep disrupted by night work, day sleep
22
 Bed rest and body clock
• Both disrupted & excessive sleep for 2
hours or more/day for 7 days in sedentary
subjects - symptoms of desynchronisation
• Sleep disrupted in 60% subjects on bed rest
for 2-3 days or more.
• >90% subjects sleep disturbance, fatigue &
desynchronisation after 3 weeks bed rest
• Bed rest leads to desynchronisation by:
a) reduced external cues (light, activity etc)
b) inactivity and lack of gravity
c) emotional (dysphoria, anxiety etc)
Structure of sleep
• 5 stages of sleep:
Stage 1 - Drowsy, not properly asleep
Stage 2 - Proper light sleep
Stage 3 - Deep sleep
Stage 4 - Very deep sleep
Rapid eye movement sleep - dreaming,
psychological restoration
Deep sleep - repairs body (growth hormone)
• In CFS, sleep more fragmented, less deep
sleep, more muscle movement - less
refreshing, more muscle ache, pain
Sleep-wake cycle and CFS 2
• Fulcher and White (1996) showed that
graded exercise was effective only if
marked sleep-wake disturbance was treated
• Marked sleep-wake disturbance:
Impaired alertness/napping in day
Disrupted sleep with muscle jerks (ask
partner, bedclothes off)
No regular or late bed & waking times
• All above more important if muscle aches,
headaches, bowel disruption, temperature
disturbance, dysphoria together
Desynchronisation and CFS
• Many cardinal symptoms of CFS overlap
with those of desynchronisation e.g. fatigue,
impaired alertness & concentration, muscle
aches, headaches, bowel disturbance
• Desynchronisation also causes increased
subjective effort with workload & disturbed
HPA axis in night shift workers
• Not all circadian rhythms desynchronise
and resynchronise at exactly the same time
• In CFS, disrupted sleep patterns (Morriss et
al, 1993), disrupted circadian disturbance &
disturbed HPA axis like shift workers
Sleep-wake cycle and CFS
• 90% CFS patients have 2 hours or more
disrupted sleep - most commonly in the
middle of the night but also at beginning
• Some CFS patients have muscle jerks and
excessive daytime sleepiness - often
complications of CFS
• Waking in sleep often occur because of
muscle pain or extremes of temperature
• Most sleep disturbance in CFS may not be
clinically important but marked sleep
disturbance and daytime rest needs
treatment
Purpose and Function of HPA Axis
•Multi-system stress responses normally
protect the body but can also damage it
•Glucocorticoids e.g. cortisol are end
product of HPA axis involved in every
organ system and physiological network
•Longer term adaptive changes are
required for an individual to respond
successfully to changes in internal state
or environment
ALLOSTASIS
23

HPA AXIS
CORTEX-5-HT, NA
HYPOTHALAMUS-CRH
PITUITARY-ACTH
ADRENAL CORTEX-CORTISOL
Cortisol, stress & inactivity
• Response to stress- promotes release of
adrenaline, improves resistance to stress &
switches off body’s reaction to stress
• Low cortisol will lead to late & weaker
response to stress, & damage to body
because adrenaline etc not switched off
• Cortisol prevent exaggerated inflammatory
responses, prevent too much water
excretion, allows blood vessels to react to
adrenaline & stimulates brain activity
• Low cortisol increases effects of inactivity
Treatment of HPA axis in CFS
• 3 RCTs of corticosteroids - only 1 improved
CFS, other 2 showed no benefits on fatigue
• Aerobic exercise and correction of circadian
rhythms reverse HPA axis abnormalities
• Low functioning HPA/low cortisol not
specific to CFS - seen in fibromyalgia and
atypical depression but most depression
increased cortisol.
Internal & external cues to HPA
• 75% cortisol released between 4-10 am, tied
to sleep-wake cycle + bursts at meal times
• Cortisol switches on alertness, metabolic
processes, & response to stress to begin day
• Cortisol is released in response to stress
• Evening cortisol increases and morning
cortisol decreases in response to perceived
stress, anxiety and depression in healthy
• Stress, anxiety and depression - weaker
switch on alertness,metabolism and energy
release and response to additional stress
Cortisol and CFS
• 50% CFS subjects show low cortisol levels.
• Reduced response of ACTH to CRH and
increased cortisol response to ACTH -
reduced HPA responsiveness to stress
• 42 similar symptoms between CFS and
conditions with low cortisol
• 30 days bedrest and night shift work will
lead to same HPA abnormalities as in CFS
• HPA axis disturbance perpetuates CFS sx
• Reduced vasopressin/CRH associated with
neurally mediated hypotension in CFS
Serotonin (5-HT) and CFS
• 5-HT innervates biological clock (SCN)
nuclei) & release of CRH in HPA axis.
• 5-HT associated with mood, sleep, appetite,
temperature reg, pain, memory & fatigue
• During prolonged exercise, muscles use
branched-chain amino acids allowing more
tryptophan into brain to make serotonin
• Higher levels of 5-HT improve mood &
muscle pain but increase fatigue (reduced
exercise time with SSRI antidepressants)
• In 4 RCTs, SSRI antidepressant fluoxetine
improved mood but no effect on fatigue
• No role for antidepressants except for mood
24
 Noradrenaline and CFS
• Noradrenaline is another brain
neurotransmitter like 5-HT
• Normal amounts of noradrenaline in CFS at
rest
• Under mental stress, increased
noradrenaline release in CFS versus
controls
Summary 1
1. Body clock (located in SCN, hypothalamus)
controls biological rhythms
2. Circadian rhythms normally run for 25 hours (some
less than 24 hours, most more) so people will go to
bed later and later if nothing to get up for
3. External cues (day light, social, work, meals)
synchronise circadian rhytms to 24 hour clock
4. Examples of circadian rhythms - sleep-wake cycle,
alertness and tiredness, concentration, eating,
temperature control, HPA axis
5. Symptoms of desynchronisation are like jet lag:
malaise, muscle aches, headaches, daytime loss of
alertness, poor sleep & appetite, bowels disturbed
Summary 3
• Most sleep disturbance in CFS does not require
specific treatment
• Sleep disturbance stops graded exercise working:
Sx of desynchronisation +
a) Impaired alertness/napping in day
b) Sleep disrupted by muscle jerks
c) No regular or late bed & waking times
Immunology and CFS
• Central nervous system, endocrine system
(HPA axis) and immune system interact to
keep body in order (homeostasis)
• Life stress, dissatisfaction with relationships
can lead to increased risk of infections,
reactivation of activities of herpes viruses
• However, no evidence of increased
infections or any specific abnormal immune
response in CFS
Summary 2
• Disrupted and increased sleep for > 2hrs/night for 7
days in sedentary produces desynchronisation sx
• Disruption of sleep affects people who normally
function best in morning worse
• Bed rest disrupts sleep after 2-3 days
• After 3 weeks >90% experience desynchronisation
sx - reduced external cues, inactivity & emotional
effects
• People decrease alertness in early afternoon but
sleep then is non-restorative for alertness/fatigue
Summary 4
• 50% CFS have low or sluggish cortisol responses -
not specific to CFS, weaker reponse to stress,
slower metabolism, increase inactivity sx
• No benefit from replacing cortisol - corrects itself
with graded exercise and synchronising body
rhythms
• No consistent evidence of serotonin, noradrenaline
or immune systems and fatigue in CFS
• Antidepressants only help mood and muscle pain.
Otherwise no use in CFS
25

Pragmatic rehabilitation training
session 5
Sleep, cortisol, circadian rhythms;
the rationale for treatment & goal
setting
What you may get out of session
• You should be able to explain the body
clock & biological rhythms
• You should be able to assess someone with
body clock desynchronisation
• You should be able to design a care plan to
reset the biological clock
• You should be able to explain about cortisol
• You should be able to assess and know how
to treat effects of inactivity and body clock
desynchronisation when both are present
Sx of desynchronised body clock
• Brought on by:
a) jet lag
b) disrupted night sleep (>2 hrs, 7 days)
c) excess sleep (>2 hrs, 7 days)
d) bed rest ( from 2-3 days, 3 weeks >90%)
• Who is affected more by these?
Contents of session
• Explaining the body clock & biological
rhythms
• Assessment -body clock desynchronisation
• Resetting the biological clock
• Explaining about cortisol
• Practice assessment - effects of inactivity
and body clock desynchronisation
• Deciding on priorities - inactivity, body
clock desynchronisation, emotion
Explaining body clock
• What body functions are under control of a
daily body clock?
• How are these body rhythms controlled?
• How are these body rhythms related to a 24
hour cycle?
• If body rhythms are not synchronised with
24 hour cycle, what symptoms and effects
on body will appear?
• What normal experiences are the symptoms
of desynchronisation like?
Body clock and cortisol
• Body clock desynchonisation disrupts
cortisol secretion & responsiveness of HPA
a) Switches on metabolism in morning so
how will body feel?
b) Prepares body to cope with physical
stress, mental stress and exertion so what
will happen?
c) Regulates immune system
• How do we know this?
26

Sleep disturbance in CFS
• Around 90% subjects have symptoms of
sleep disturbance at night
• What symptoms do these CFS patients
complain of?
• What might one see on a sleep EEG in CFS
patients?
• In around 33% CFS patients, sleep
disturbance will cause added disability,
added CFS symptoms and will prevent
graded exercise from working
Disrupted sleep-wake cycle
• Naps in day (usually early afternoon when
actually asleep but bed rest may be all day)
• Sleep disturbance with muscle jerks -
kicking, hitting, bed clothes all over (note
restless legs syndrome)
• No regular waking and bedtime
• Late waking and bedtime (bed after
midnight, gets up mid or late morning or
later)
Create a quality sleep pattern
• Re-establish sleep cues. How?
• Drop unhelpful sleep habits. What are
these?
• If you succeed, what will you notice?
• What will happen to your cortisol?
Which CFS patients require
sleep-wake cycle treatment
• Recognise sx of body clock desynchronised
- remember jet-lag - a) to e) together:
a) impaired alertness (drowsy not just tired)
and attentional capacity
b) poor quality sleep - not refreshed
c) muscle aches, stiffness and headaches
d) poor appetite and bowel disturbance
e) effort ++ after both physical & mental
exertion
• Look for signs of disrupted sleep-wake
Explaining why naps are bad
• Sends disruptive signal to your body clock
throwing out normal body rhythm so sx
• Deep sleep in day reduces night time deep
sleep, resulting in unrefreshing sleep &
wanting to sleep in day - vicious cycle
• Sleeping or resting in day means body is
inactive contributing to effects of
deconditioning
• Naps reduce cortisol response of body so
less energy, & body copes less with stress,
mental & physical activity, or infection
In morning
• Build regular cues to morning routine
• Routinely use alarm clock
• Expose body to bright light - draw curtains
or turn on light. Why?
• Get up same time each morning, no matter
what time fell asleep last night
• Resist temptation to sleep in late if had a
bad night - interferes with next night’s sleep
• Eat breakfast
• Experiment. Get up early regularly for 7
days, then usual pattern of staying in bed.
Rate fatigue morning, afternoon, evening
and sleep at night Aerobic exercise to
increase breathing & heart rate: standing
sessions, walking, stair exercises, exercise
bike, dancing, jogging,
• Depends on deconditioning & daily living 27
 If patient unconvinced
• Experiment. Get up early regularly for 7
days, then usual pattern of staying in bed.
Rate fatigue morning, afternoon, evening
and sleep at night (1-10 scale).
• Are there any differences? If not, then
why not get up and make more of day?
• If patient struggles to motivate themselves
to get up, look for signs of depressed mood.
• Depression worse in morning - loss of
interest & motivation, pessimism,
sadness/weepiness etc. May need treatment
In the day
• Napping becomes a habit
• Plan you day so that short periods of
activity are followed by 30 minutes rest in
chair - this will allow the body to recover so
need for sleep in day which will have no
benefit or worsen symptoms can do safely
• At times when normally nap, distraction e.g.
talking to friend or relative (in person,
phone, chatline), doing a task, gentle
exercise, go outside
• If necessary, reduce daytime sleep by one
hour per day for 7 days, then a further one
hour for 7 days
In evening
• Get into relaxed and predictable bed time
routine
• Slow winding down process before going to
bed at night
• Do all essential activities through day-
priortise - do not leave them to do last thing
• Do not go to bed with your troubles. Write
them down, leave them to the morning
when less tires (best level of alertness in
late morning after morning cortisol surge)
• Avoid vigorous exercise before bed
Changing morning pattern
• If patient convinced, not depressed and
finds change difficult,
a) set alarm clock and get up 1 hour earlier
than last week
b) get up 1 hour earlier each week until in
bed for only 8-9 hours/night (healthiest
pattern in terms of mortality 7-8 hrs sleep)
• For first 2-3 days, resetting body clock may
increase fatigue but this will pass with
persistence
If unconvinced
• Experiment. Stay awake through nap time
for 7 days (minimum - why?). Rate fatigue
and alertness at usual time of nap, 2-3
hours later, evening and quality of sleep,
and fatigue and alertness in morning.
Repeat when goes back to napping pattern
• If no difference, why not stay awake in day
and make more use of the time.
In evening continued
• Avoid stimulants with caffeine, xanthine,
nicotine,e.g. coffee, tea, chocolate, coca,
cigarettes +
• Avoid more than 1 alcohol drink- wakes up
in night (not just to urinate)
• Milky drinks, decaffeinated drinks
• No large late snacks or meals
• Warm bath, soothing music, tv, light
amusement, relaxation tape, massage
• Go to bed at same time
• Body clock recognises signs of bedtime
routine and synchronises itself to routine
28
 Night
• If do not sleep, then lying relaxed will rest
and promote recharging of body energy and
synchonisation of body clock
• Body will sleep if it needs to - do not worry
• Promoting sleep- relaxation exercises,
breathing exercises (valsalva - breath out 6
sec, breath in 4 sec, slows heart etc)
• Keep bed for night sleep and activities
associated with sleep
• Rest in chair by day in a different room.
Why?
• Avoid temptation for day time sleep or
sleeping tablets- rebound bad night’s sleep
Assessment continued
• When would inactivity be first target of care
plan?
• When would body clock desync become
first target of care plan?
• When would emotional issues become first
target of care plan?
• If all 3 of these issues need to be tackled,
what will influence your decision to start
with one target over another?
• See case studies 1 and 2.
Consolidating this week’s work
1. Re-read the patient presentation and patient manual
about resetting the biological clock, think how you
would explain this and set out to reset the body
clock, not down any questions you may have about
it for subsequent training sessions.
1. Please complete the care plans for the 2 case studies
that were introduced in this session.
Assessment- deconditioning, body
clock desynchronisation, emotion
• What are the symptoms of deconditioning -
on muscles, metabolism, circulation,
autonomic nervous system?
• How might deconditioning affect exercise
capacity, sensory deprivation, emotion
• What are the symptoms of body clock
desynchronisation?
• How might body clock desync. affect
exercise capacity, mental capacity, stress
repsonse, cortisol, metabolism, immunity?
Summary of body clock session
• Recognise symptoms of body clock
desynchronisation and sleep-wake disturbance
• Explain need to reset body clock, regular waking
time, avoid naps- regular activity with chair rest
in day, regular gradual bedtime routine
• Not sleeping at night is not harmful if resting for
8-9 hours - body will sleep if it needs to
• Demonstrate through experiment need to reset
body clock- regular waking, not napping
• Consider depression
• Assess -inactivity, body clock, emotion
Preparation for next week
• To prepare for the taught session read the abstracts
of the papers listed in the “anxiety,
hyperventilation, depression and coping” sections
of the reading list & treatment manual. If you have
time, you can read the full papers.
• When you read, always note any questions or
problems, and ASK about them at the next
session!
29
 Contents of session

• Aims of session
• Terminology
Pragmatic rehabilitation training
• Psychological approaches to stress and anxiety
session 6
• Stress and anxiety in CFS patients
The somatic symptoms of anxiety. • Physiology of stress and the somatic symptoms
Hyperventilation of anxiety
• Health anxiety and panic
• Hyperventilation

What you may get out of the session

• You should be able to outline the working of the
sympathetic adrenal medullary (SAM) response
system
• You should be able to describe the somatic
symptoms of anxiety
• You should be familiar with the thoughts
(cognitions) that are associated with health
anxiety and panic
• You should be able to describe the mechanisms
and consequences of hyperventilation
Before we start, some terminology
• Stress, arousal, anxiety
• Need to find a term that is acceptable to
patients
• Also … when reading papers, be aware that
– Adrenaline= epinephrine in the US
– Noradrenaline = norepinephrine in the US

The transactional model of stress Stress-appraisal-coping

• The word “stress” is used to mean various •Potential stressor
things •Primary appraisal
– Stressors (stimuli) •"Is this threatening?"

– The stress response •Yes •No

• Different people react differently to the same •Secondary appraisal

•"Can I cope?"
•No stress

stressors (e.g. marriage breakup)

•No •Yes
• Stress response occurs when person encounters •STRESS •Coping
a situation which is appraised as threatening,
•Is my coping effective?
and when they do not have the resources
•NO - STRESS •YES - no stress
needed to overcome (cope with) the threat

30
 Anxiety
• Psychological symptoms
– Fear, dread, agitation, worry
• Somatic symptoms
– Shaking, heart racing or pounding, nausea, dry
mouth, sweating, tension headache, irritable bowel
• Anxiety disorders
– GAD, panic and phobic disorders, health anxiety
disorders and hypochondriasis
Anxiety and anxiety disorders in CFS
• Although depression and anxiety are common in
CFS, only a minority of patients would fulfil
diagnostic criteria for anxiety disorders.
• But patients may still be very anxious in response to
– Not understanding their symptoms - health anxiety
– Not being able to function as before - job, finance,
domestic worries.
– Feeling disbelieved and misunderstood may affect social
interactions - worries about relationships
• Note, in people with primary anxiety disorders,
“exhaustion” is 2nd most common symptom. (Angst
et al., 1985)
Neurotransmitters
• Communication between nerve cells - also
between nerve cells and other cells (e.g. in
muscles or glands)
• In most cases, across junctions, or synapses,
where two nerves meet but do not touch
• Neurotransmitters are chemical messengers which
alter permeability of membrane at synapse – can
have excitatory or inhibitory effect
What CFS patients say about stress
• Surawy et al. (1997) found that many CFS
patients recognise “stress” as contributing to
their illness.
• CFS patients and their significant others
describe patients as being over-active,
striving, perfectionistic prior to illness.
The nervous system
• Central nervous system – brain, spinal cord
• Peripheral NS – nerves connecting CNS with all
other arts of body, organs, glands, muscles
• Peripheral NS subdivided into
– Voluntary (or somatic) NS (skeletal muscles)
– Autonomic NS – not under conscious control, regulates
bodily functions e.g. digestion, temperature regulation
– Roles of VNS and ANS overlap (e.g. in breathing)
• Autonomic NS divided into
– Sympathetic (generally, dominant in aroused states)
– Parasympathetic (generally, dominant in relaxed states)
The stress response
• Threat identified (requires cognitive processing)
• Emotional responses generated in limbic system
of brain
• Hypothalamus activated – controls HPA and
SAM response systems, body’s 2 stress response
systems
• SNS releases neurotransmitter noradrenaline to
activate bodily organs
• Fight or flight
• Noradrenaline generally excitatory effect
• Link between psychological and physiological
31
 The SAM stress-response system
• Broadly speaking, SAM activated quickly in
response to immediate threat.
• Additional mechanism is release of adrenaline
(from adrenal medulla) into blood stream
• Thus SAM is under control of both SNS and
adrenal glands
What are the effects of the release of
adrenaline into the body?
• Widespread effects.
• Function of stress response is to provide oxygen
and energy (via blood) to brain and muscles. Huge
cardiovascular response
– Heart beats faster and harder to increase output by up
to 5 times
– Tiny muscles around blood vessels, innervated by SNS,
contract; blood vessels constrict to deliver blood faster
– Blood pressure raised
Other symptoms associated with more long
term, lower level, arousal & anxiety
• Stomach muscles are affected – feelings of
nausea, stomach pain, or even vomiting
• Altered blood flow to bowel can affect passage
of food
• Adrenaline affects muscles in bowel wall,
causing muscles to contract abnormally
• Both of the above can lead to altered bowel
habits – diarrhoea, constipation, irregularity,
pain, bloating.
The adrenal glands
• Two of them!
• One on top of each kidney
• Each with two distinct functional zones
• Inner medulla directly innervated by SNS
and when activated releases adrenaline into
blood stream
• (Outer adrenal cortex involved in HPA
system, as you may have learned last week)
More effects of adrenaline on body
• At same time, blood flow to non-essential
(for fighting or fleeing) organs reduced, e.g.
– Skin – can lead to strange pallor, or sensations
like numbness or tingling
– Digestive organs – can interfere with normal
bowel function, affect appetite
• Increase in muscle tension
• Changes in temperature regulation
Yet more symptoms….
• Altered breathing and dry mouth (see later)
• Sweating, causing clammy hands and feet
• Vision affected – activation of SNS
associated with dilation of pupils and
alteration of lens shape – can cause blurring
• Anxiety associated with sleep disturbance,
waking up feeling panicky and sweaty
• Concentration and memory function best at
levels of moderate arousal
32
 And symptoms can have knock-on
effects…
• Muscle tension can lead to head-ache, jaw-
ache and neck ache
• Dry mouth can lead to sore throat
• Can have a feeling of tightness in the chest
due to muscle tension and altered breathing
patterns
• Also psychological effects – what do these
symptoms mean?
Panic
• A small proportion of patients with CFS
also suffer from panic attacks.
• Somatic symptoms (especially chest pains,
pounding heart, breathlessness) interpreted
catastrophically, as sign of impending
collapse
• Vicious circle of anxiety leading to
symptoms leading to increased anxiety
What can happen when somatic
symptoms of anxiety are interpreted as
signs of disease…
• Selective attention & hypervigilance
• rumination - self- focused attention and pre-
occupation with health
• unhelpful ways of thinking
– not taking account of alternative explanations
– catastrophizing (ie magnifying, thinking the worst)
– selective abstraction (taking selected bits of
information out of context)
Health anxiety
• Continuum of health anxiety
• People at far end may receive diagnosis of
hypochondriasis, (defined as a distressing belief
in having a serious illness when none is present,
and the belief is resistant to reassurance)
• People with CFS rarely have health anxiety this
severe, but may have some health anxiety
features (Trigwell et al.,1995).
The importance of how bodily
sensations are interpreted
• CFS patients often haven’t received an
explanation for their many symptoms.
• The symptoms remind them of ones they have
had when they’ve been ill in the past.
• They often come to believe, in the absence of
any better explanation, that their bodily
sensations are indicative of disease and damage
• This makes them more anxious, and fearful of
exacerbating the symptoms
…and unhelpful thoughts might be
associated with unhelpful behaviours
• Avoidance e.g. of activity
– As you know, inactivity leads to cardiovascular and
muscular deconditioning which can increase the
likelihood of certain symptoms
– no scope for disconfirmatory experiences
• Checking, touching, feeling (e.g sore neck
glands)
– can lead to tissue damage and pain
– maintains attention on “problem” so benign
sensations are noticed more readily
33
 Hyperventilation
• Mentioned earlier that stress, anxiety, arousal can
be associated with altered breathing patterns
• Hyperventilation can occur when people are
anxious; chronic hyperventilation can also
produce symptoms which increase anxiety, so
again there is a vicious circle
• Terminology – hyperventilation a pejorative
term? – over-breathing, altered breathing
patterns
Breathing
• To deliver oxygen (O2) to arterial blood and to
remove excess carbon dioxide (CO2) from
body
• Gas exchange occurs in lung alveoli – rest of
lung is “dead space”.
• Inspired air mixes with residual air in “dead
space” – enrichment in O2 and depletion in
CO2
• Gases diffuse down pressure gradients
Expiration (breathing out)
• At rest, a passive process
• Occurs when inspiration stops, due to
elasticity of lung tissue
• In exercise, intercostal muscles recruited to
lower rib cage and change shape of thoracic
cavity, compressing lungs and forcing air
out
What is hyperventilation?
• Hyperventilation is defined as breathing in
excess of the body’s metabolic demands.
• The only reliable way to know if someone
is hyperventilating is to measure carbon
dioxide in expired air, but there are signs
associated with it, such as visible panting
and audible sighing, and symptoms such as
feelings of breathlessness, dizziness etc.
Inspiration (breathing in)
• Normally, thoracic cavity is expanded by
contraction of diaphragm – sucks air in
• Diaphragmatic breathing may be sufficient at rest
• In exercise, need to breath faster and harder –
used intercostal muscles
• Strenuous activity – extra muscles recruited, eg in
neck
Control of breathing
• Involuntary, under control of brain stem
structures via autonomic nervous system
• Involuntary control of breathing influenced
by arterial PCO2 among other factors
• Also voluntary control (can over-breathe,
hold our breath, etc by using various
muscles)
34

Gas pressures
• Partial pressures – pressures generated by
individual gases in mixture e.g. air
• Partial oxygen pressure denoted PO2
• Partial carbon dioxide pressure denoted PCO2
• Determines extent of gas exchange – gases
diffuse until equal pressure reached on each
side of divide (alveolar membrane)
What happens when there are
reduced CO2 levels in blood?
• Cerebral blood vessels constrict to reduce CO2
loss….
• …..but this also decreases oxygenation,
resulting in dizziness and even fainting, also
cognitive problems, psycho-sensory
experiences like depersonalization
• Also, blood pH increases (alkalosis) – can
affect peripheral nerves and lead to numbness
and tingling
Is there evidence for hyperventilation in CFS?
• Excessive and prolonged arousal can be associated with
HV
• HV can cause many of the symptoms of CFS
• In one study, noted low pCO2 in CFS patients,
suggesting mild HV at rest (Lavietes et al, 1996)
• But another study found no evidence of HV in the
majority of patients (Saisch et al.,1994)
• Bazelmans et al. (1997) found more HV in CFS patients
than in healthy controls, but among CFS patients HV
was not correlated with CFS symptoms
• HV may be important for some patients, not all.
What happens in hyperventilation (HV) ?
• Rate of alveolar ventilation greater than
needed for metabolism at the time
• Composition of alveolar gases altered from
normal
• Increased PO2 and decreased PCO2 .
• Arterial blood saturated with O2, so little
effect
• But blood CO2 level falls beyond optimal
levels
Other consequences of HV…
• Chest pain due to overuse of intercostal
muscles
• Neck pain, if neck muscles used in breathing,
this can then lead to tension in neck muscles,
and then to tension headaches
• Dry mouth, leading to sore throat, difficulty
swallowing, as consequence of mouth-
breathing
• Digestive disturbance from swallowing air
• Feelings of weakness and listlessness
Summary
• Stress involves interaction between what is going on in
environment and a person’s resources to cope
• Anxiety – both psychological and somatic aspects
• Physiological response to stressors has wide reaching
effects throughout body
• Many symptoms produced by stress response and by
ongoing anxiety and over-arousal
• Patient’s interpretation of these symptoms important and
will affect behaviour
• In some CFS patients, some symptoms may be due to
hyperventilation
35
 Contents of session
Pragmatic rehabilitation training • Aims of session
session 7 • Terminology
• Psychological approaches to stress and anxiety
The somatic symptoms of anxiety.
Hyperventilation • Stress and anxiety in CFS patients
Rationale for treatment and goal setting • Physiology of stress and the somatic symptoms
of anxiety
• Health anxiety and panic
• Hyperventilation

What you may get out of the session

• You should be able to outline the working of the
sympathetic adrenal medullary (SAM) response
system
• You should be able to describe the somatic
symptoms of anxiety
• You should be familiar with the thoughts
(cognitions) that are associated with health
anxiety and panic
• You should be able to describe the mechanisms
and consequences of hyperventilation
Before we start, some terminology
• Stress, arousal, anxiety
• Need to find a term that is acceptable to
patients
• Also … when reading papers, be aware that
– Adrenaline= epinephrine in the US
– Noradrenaline = norepinephrine in the US

The transactional model of stress Stress-appraisal-coping

• The word “stress” is used to mean various •Potential stressor
things •Primary appraisal
– Stressors (stimuli) •"Is this threatening?"

– The stress response •Yes •No

• Different people react differently to the same •Secondary appraisal

•"Can I cope?"
•No stress

stressors (e.g. marriage breakup)

•No •Yes
• Stress response occurs when person encounters •STRESS •Coping
a situation which is appraised as threatening,
•Is my coping effective?
and when they do not have the resources
•NO - STRESS •YES - no stress
needed to overcome (cope with) the threat

36
 Anxiety
• Psychological symptoms
– Fear, dread, agitation, worry
• Somatic symptoms
– Shaking, heart racing or pounding, nausea, dry
mouth, sweating, tension headache, irritable bowel
• Anxiety disorders
– GAD, panic and phobic disorders, health anxiety
disorders and hypochondriasis
Anxiety and anxiety disorders in CFS
• Although depression and anxiety are common in
CFS, only a minority of patients would fulfil
diagnostic criteria for anxiety disorders.
• But patients may still be very anxious in response to
– Not understanding their symptoms - health anxiety
– Not being able to function as before - job, finance,
domestic worries.
– Feeling disbelieved and misunderstood may affect social
interactions - worries about relationships
• Note, in people with primary anxiety disorders,
“exhaustion” is 2nd most common symptom. (Angst
et al., 1985)
Neurotransmitters
• Communication between nerve cells - also
between nerve cells and other cells (e.g. in
muscles or glands)
• In most cases, across junctions, or synapses,
where two nerves meet but do not touch
• Neurotransmitters are chemical messengers which
alter permeability of membrane at synapse – can
have excitatory or inhibitory effect
What CFS patients say about stress
• Surawy et al. (1997) found that many CFS
patients recognise “stress” as contributing to
their illness.
• CFS patients and their significant others
describe patients as being over-active,
striving, perfectionistic prior to illness.
The nervous system
• Central nervous system – brain, spinal cord
• Peripheral NS – nerves connecting CNS with all
other arts of body, organs, glands, muscles
• Peripheral NS subdivided into
– Voluntary (or somatic) NS (skeletal muscles)
– Autonomic NS – not under conscious control, regulates
bodily functions e.g. digestion, temperature regulation
– Roles of VNS and ANS overlap (e.g. in breathing)
• Autonomic NS divided into
– Sympathetic (generally, dominant in aroused states)
– Parasympathetic (generally, dominant in relaxed states)
The stress response
• Threat identified (requires cognitive processing)
• Emotional responses generated in limbic system
of brain
• Hypothalamus activated – controls HPA and
SAM response systems, body’s 2 stress response
systems
• SNS releases neurotransmitter noradrenaline to
activate bodily organs
• Fight or flight
• Noradrenaline generally excitatory effect
• Link between psychological and physiological
37
 The SAM stress-response system
• Broadly speaking, SAM activated quickly in
response to immediate threat.
• Additional mechanism is release of adrenaline
(from adrenal medulla) into blood stream
• Thus SAM is under control of both SNS and
adrenal glands
What are the effects of the release of
adrenaline into the body?
• Widespread effects.
• Function of stress response is to provide oxygen
and energy (via blood) to brain and muscles. Huge
cardiovascular response
– Heart beats faster and harder to increase output by up
to 5 times
– Tiny muscles around blood vessels, innervated by SNS,
contract; blood vessels constrict to deliver blood faster
– Blood pressure raised
Other symptoms associated with more long
term, lower level, arousal & anxiety
• Stomach muscles are affected – feelings of
nausea, stomach pain, or even vomiting
• Altered blood flow to bowel can affect passage
of food
• Adrenaline affects muscles in bowel wall,
causing muscles to contract abnormally
• Both of the above can lead to altered bowel
habits – diarrhoea, constipation, irregularity,
pain, bloating.
The adrenal glands
• Two of them!
• One on top of each kidney
• Each with two distinct functional zones
• Inner medulla directly innervated by SNS
and when activated releases adrenaline into
blood stream
• (Outer adrenal cortex involved in HPA
system, as you may have learned last week)
More effects of adrenaline on body
• At same time, blood flow to non-essential
(for fighting or fleeing) organs reduced, e.g.
– Skin – can lead to strange pallor, or sensations
like numbness or tingling
– Digestive organs – can interfere with normal
bowel function, affect appetite
• Increase in muscle tension
• Changes in temperature regulation
Yet more symptoms….
• Altered breathing and dry mouth (see later)
• Sweating, causing clammy hands and feet
• Vision affected – activation of SNS
associated with dilation of pupils and
alteration of lens shape – can cause blurring
• Anxiety associated with sleep disturbance,
waking up feeling panicky and sweaty
• Concentration and memory function best at
levels of moderate arousal
38
 And symptoms can have knock-on
effects…
• Muscle tension can lead to head-ache, jaw-
ache and neck ache
• Dry mouth can lead to sore throat
• Can have a feeling of tightness in the chest
due to muscle tension and altered breathing
patterns
• Also psychological effects – what do these
symptoms mean?
Panic
• A small proportion of patients with CFS
also suffer from panic attacks.
• Somatic symptoms (especially chest pains,
pounding heart, breathlessness) interpreted
catastrophically, as sign of impending
collapse
• Vicious circle of anxiety leading to
symptoms leading to increased anxiety
What can happen when somatic
symptoms of anxiety are interpreted as
signs of disease…
• Selective attention & hypervigilance
• rumination - self- focused attention and pre-
occupation with health
• unhelpful ways of thinking
– not taking account of alternative explanations
– catastrophizing (ie magnifying, thinking the worst)
– selective abstraction (taking selected bits of
information out of context)
Health anxiety
• Continuum of health anxiety
• People at far end may receive diagnosis of
hypochondriasis, (defined as a distressing belief
in having a serious illness when none is present,
and the belief is resistant to reassurance)
• People with CFS rarely have health anxiety this
severe, but may have some health anxiety
features (Trigwell et al.,1995).
The importance of how bodily
sensations are interpreted
• CFS patients often haven’t received an
explanation for their many symptoms.
• The symptoms remind them of ones they have
had when they’ve been ill in the past.
• They often come to believe, in the absence of
any better explanation, that their bodily
sensations are indicative of disease and damage
• This makes them more anxious, and fearful of
exacerbating the symptoms
…and unhelpful thoughts might be
associated with unhelpful behaviours
• Avoidance e.g. of activity
– As you know, inactivity leads to cardiovascular and
muscular deconditioning which can increase the
likelihood of certain symptoms
– no scope for disconfirmatory experiences
• Checking, touching, feeling (e.g sore neck
glands)
– can lead to tissue damage and pain
– maintains attention on “problem” so benign
sensations are noticed more readily
39
 Hyperventilation
• Mentioned earlier that stress, anxiety, arousal can
be associated with altered breathing patterns
• Hyperventilation can occur when people are
anxious; chronic hyperventilation can also
produce symptoms which increase anxiety, so
again there is a vicious circle
• Terminology – hyperventilation a pejorative
term? – over-breathing, altered breathing
patterns
Breathing
• To deliver oxygen (O2) to arterial blood and to
remove excess carbon dioxide (CO2) from
body
• Gas exchange occurs in lung alveoli – rest of
lung is “dead space”.
• Inspired air mixes with residual air in “dead
space” – enrichment in O2 and depletion in
CO2
• Gases diffuse down pressure gradients
Expiration (breathing out)
• At rest, a passive process
• Occurs when inspiration stops, due to
elasticity of lung tissue
• In exercise, intercostal muscles recruited to
lower rib cage and change shape of thoracic
cavity, compressing lungs and forcing air
out
What is hyperventilation?
• Hyperventilation is defined as breathing in
excess of the body’s metabolic demands.
• The only reliable way to know if someone
is hyperventilating is to measure carbon
dioxide in expired air, but there are signs
associated with it, such as visible panting
and audible sighing, and symptoms such as
feelings of breathlessness, dizziness etc.
Inspiration (breathing in)
• Normally, thoracic cavity is expanded by
contraction of diaphragm – sucks air in
• Diaphragmatic breathing may be sufficient at rest
• In exercise, need to breath faster and harder –
used intercostal muscles
• Strenuous activity – extra muscles recruited, eg in
neck
Control of breathing
• Involuntary, under control of brain stem
structures via autonomic nervous system
• Involuntary control of breathing influenced
by arterial PCO2 among other factors
• Also voluntary control (can over-breathe,
hold our breath, etc by using various
muscles)
40

Gas pressures
• Partial pressures – pressures generated by
individual gases in mixture e.g. air
• Partial oxygen pressure denoted PO2
• Partial carbon dioxide pressure denoted PCO2
• Determines extent of gas exchange – gases
diffuse until equal pressure reached on each
side of divide (alveolar membrane)
What happens when there are
reduced CO2 levels in blood?
• Cerebral blood vessels constrict to reduce CO2
loss….
• …..but this also decreases oxygenation,
resulting in dizziness and even fainting, also
cognitive problems, psycho-sensory
experiences like depersonalization
• Also, blood pH increases (alkalosis) – can
affect peripheral nerves and lead to numbness
and tingling
Is there evidence for hyperventilation in CFS?
• Excessive and prolonged arousal can be associated with
HV
• HV can cause many of the symptoms of CFS
• In one study, noted low pCO2 in CFS patients,
suggesting mild HV at rest (Lavietes et al, 1996)
• But another study found no evidence of HV in the
majority of patients (Saisch et al.,1994)
• Bazelmans et al. (1997) found more HV in CFS patients
than in healthy controls, but among CFS patients HV
was not correlated with CFS symptoms
• HV may be important for some patients, not all.
What happens in hyperventilation (HV) ?
• Rate of alveolar ventilation greater than
needed for metabolism at the time
• Composition of alveolar gases altered from
normal
• Increased PO2 and decreased PCO2 .
• Arterial blood saturated with O2, so little
effect
• But blood CO2 level falls beyond optimal
levels
Other consequences of HV…
• Chest pain due to overuse of intercostal
muscles
• Neck pain, if neck muscles used in breathing,
this can then lead to tension in neck muscles,
and then to tension headaches
• Dry mouth, leading to sore throat, difficulty
swallowing, as consequence of mouth-
breathing
• Digestive disturbance from swallowing air
• Feelings of weakness and listlessness
Summary
• Stress involves interaction between what is going on in
environment and a person’s resources to cope
• Anxiety – both psychological and somatic aspects
• Physiological response to stressors has wide reaching
effects throughout body
• Many symptoms produced by stress response and by
ongoing anxiety and over-arousal
• Patient’s interpretation of these symptoms important and
will affect behaviour
• In some CFS patients, some symptoms may be due to
hyperventilation
41
 Contents of session

• Aims of session
• Homework role plays
Pragmatic rehabilitation training
• The structure of treatment – what happens on
session 8 each week
Agenda setting and the structure of • How to set an agenda for each session
treatment • Setting goals for treatment
• Reviewing treatment and re-setting goals

What you may get out of the session

• You should have identified how role plays can Homework role plays
be used to develop clinical skills
What was done Where could it be
• You should be clear about the set structure of
well improved?
the treatment, what can be varied and what
cannot Therapist
• You should know how to decide on the goals of
treatment with patients Patient
• You should know how to review progress with
patients and how to use that review to set new Observer
goals

Homework role plays

• For each role play, think about the following:
Reflecting on the role-play process
– Which symptom(s) did the patient query?
– What does it say in the patient presentation about • What did you find helpful about the role-
these symptoms? playing exercise?
– Which are the relevant pages of the patient manual? • What did you find unhelpful about the
– How accurate and evidence based was the therapist exercise?
explanation of symptoms?
– Did the therapist communicate clearly and with • How could future role-play exercises be
authority? improved?
– Was the patient reassured by the explanation?
– What did you learn from taking part in/observing
this role play?

42
 Content of session

W1 Visit 1
90 minutes
Half hour history taking, followed by 1 hour rationale-giving and
handing over of patient manual.
Week 1 face-to-face
W2 Visit 2
60 minutes
Review manual, ask patient which bits are most relevant to their needs,
followed by collaborative goal setting in three areas: deconditioning, • Introductions etc. (any special
sleep and anxiety, first prioritising the areas with the patient.
W3 Phone 1 Progress with goals; identifying impediments to progress; new goal
considerations?)
W4
30 minutes
Visit 3
setting.
Recalibrating goals according to progress achieved; checking that de-
• Taking a brief history
W6
60 minutes
Phone 2
conditioning is being addressed; reinforcing rationale.
As week 4
• Presenting the explanation
W8
30 minutes
Phone 3 Half way review, looking forward to the future
• Handing over the manual
W10
30 minutes
Visit 4
Addressing termination issues
Managing alone, looking forward to the future, relapse prevention
• Setting agenda for next session
W12
60 minutes
Phone 4
What has helped, what hasn’t.
Continued goal setting, monitoring progress, opportunities for change
• Patients’ tasks for intervening period (read
30 minutes and relapse prevention. the manual – which bits? – noting queries)
W15 Phone 5 Continued goal setting, monitoring progress, opportunities for change
30 minutes and relapse prevention.
W19 Phone 6 Continued goal setting monitoring progress,, opportunities for change
30 minutes and relapse prevention, ending

Week 2 – face-to-face
Role-play exercise • Reviewing the manual & responding to
questions
• Introduction
• Which bits are most relevant to patient?
Greeting, saying who you are, asking where to
sit, asking the patient how he/she likes to be • Collaboratively setting main goals for
called, explaining purpose, explaining tape. treatment in each of 3 areas:
• History – Deconditioning
Eliciting symptoms, eliciting effect of symptoms, – Sleep / circadian rhythms
brief history (10 minutes max.). How to hurry – Anxiety
the patient along (without being rude). • Setting tasks for next week
• Setting agenda for next week’s telephone call

Weeks 3&6 telephone calls

What’s special about calls?
• Eliciting patient feedback
• Evaluating progress towards goals and • Only one channel of information –
impediments to progress opportunities for error (especially about
emotional issues).
• Reassurance and reinforcing the rationale
• Short – need to be planned and focused
ensuring manual is being used
• Check how comfortable the patient is
• Encouragement and motivation talking on the phone
• Keeping sight of the overall plan • Need for clarity – check whether the patient
• Setting tasks for next week has understood?
• Setting agenda for next telephone call

43

The non-compliant patient
• Avoid being punitive – positively reframe!
• Elicit exactly how much homework has
been done
• Identify impediments
– Didn’t understand/agree with rationale
– Too difficult
– Unanticipated barriers
• Revised homework plan
Week 8 phone call
• Half way through
• Review progress to date – draw out
positives – encouragement
• Considering goals for second half of
treatment
• Introducing termination issues
What is set and where there is
flexibility
• Try to stick as closely as possible to the
prescribed number and spacing of visits – record
any deviation
• It is essential that all the elements of PR are
covered – rationale given, manual given and
referred to, rehabilitation programme in each of
the three areas, patient encouraged to increase
activity, regularise sleep/wake patterns and
practice relaxation (with tape)
Week 4 – face-to-face
• Eliciting patient feedback
• Evaluating progress towards goals and
impediments to progress
• Ensuring that deconditioning/graded
activity is being addressed
• Recalibrating goals if necessary
• Setting tasks for next week
• Setting agenda for next telephone call
Termination issues
• Patients may be anxious about termination
• Prepare them – remind them when
termination is due
• Ask them about whether they have any
termination worries
• Remind them that they can continue the
programme using the manual
• Reassure – reinforce self-confidence.
Where there is flexibility
• While it is important that you cover all the
PR elements, depending on the particular
patient’s symptoms and problems, you may
need to emphasise some aspects more than
others.
• It is important to listen to the patient and to
work collaboratively in setting goals for
activity, sleep and anxiety reduction
44
The second half of the PR treatment
Homework
schedule
• Later sessions will address: Another bloody role-play!
– How to keep patients motivated using
motivational interviewing techniques
– How to plan for the future and discuss relapse
prevention with patients
– Discharging patients back to their GPs

Tasks of PR treatment
Impediments to Change • The main tasks of PR treatment are:
and Anxiety Problems 1. to deliver graded exercise to tackle
deconditioning;
2. address body clock problems;
3. address emotional issues including
anxiety

Barriers to overcome Fears

• The patient barriers to successful • Today is about identifying and managing
treatment are: the fears of patients
1) Fears of the patient about consequences • We will largely do this by role-play with an
2) Lack of motivation actress
3) Lack of understanding • First, let us identify when such a fear arises
4) Additional problems e.g. depression, and discuss general principles of
restrictions on PR through physical illness management

45
 Identification of fears
• When a patient seems to understand what
you are asking them to do but is hesitant to
do it, resistant or refuses.
• Especially when they look worried or
anxious ( may experience anxiety
symptoms)
• Ask yourself whether they are fearful of the
consequences of what you are asking
Dealing with Fears-RINSE
• Refer to supervisor and address at next contact or
refer to section of manual relevant to fear
• Inform patient what is likely to happen, what
bodily symptoms signify, and additional
symptoms caused by anxiety
• Negotiate with patient about task
• Set a new task to make it more manageable or a
new task to gain information
• Evaluate new task and what information was
obtained at next contact
Expect Fears
• Almost all CFS patients have fears about
the consequences of PR that become
evident at some stage
• Successful PR treatment will identify and
address these fears
Identification of Fears continued
• Enquire if they have any concerns about what you
asked them to do
• If they do, ask them what they think might happen
if they did the task you set.
• Ask them what was the worst that could happen
• How do they know that this may happen?
• Usually it is based on their own experience or
from other sources of information
Setting tasks to gain information
• Set a task for the patient like the one you
originally proposed, then the approach they
usually take
• Ask the patient to predict what will happen
• Measure the symptoms or consequences
they fear and the effects you think it will
have on 10cm visual analogue scale
Motivational Interviewing
Techniques
46
 Learning objectives
• Learn theory of motivational interviewing:
1) Cognitive Dissonance
2) Transtheoretical Model of Change
3) Evaluating Pros and Cons of Actions
4) Making change seem possible
• Practice motivational interviewing with
actress
Transtheoretical Model of Change
1) Precontemplation – Rejects information contrary
to their existing belief
2) Contemplation – Anxious, realises there is a
problem with what they are doing
3) Action – Believes they should change and starts
to act in line with new belief
4) Maintenance – New actions and beliefs are well
–established
5) Relapse – Actions return to previous pattern but
believes may still have a problem
Consequences of not changing
• Make patient consider gradual consequences of:
deconditioning
body clock problems
isolation
social consequences
emotional consequences
• Offer a non-threatening and realistic way of
preventing the consequences they fear
Cognitive Dissonance
• People become anxious (demoralised, frustrated,
worried, stressed, irritable, guilty) if what they do
does not match what they believe they should do
• If you can change what they believe they should
do, then either they will change what they do in
line with this new belief or reject your view and
return to their old actions
• This happens to reduce their negative emotion
(usually anxiety)
Actions in Model of Change
1) Precontemplation – Make patient more anxious
by giving information about consequences of
their actions. Action must seem possible.
2) Contemplation – Weigh up pros and cons of
changing their actions. Information giving and
tasks to get information important.
3) Action – Set tasks that are achievable. Reward
any success.
4) Maintenance – Establish routines that are likely
to prevent relapse but are sustainable.
5) Relapse – Evaluate what happened. Repeat
contemplation and action stages bearing in mind
strategies that worked or didn’t work previously
Pros and cons
Pros Cons
Short-term
Long-term
47

Pragmatic rehabilitation training
session 13
Rehabilitation issues (getting back to work etc.)
What you may get out of the session
• You should be aware of some of the dilemmas
and pitfalls of returning to work for patients
with CFS
• You should start thinking about how best to help
patients design a sensible return to work plan
• You should think about what additional
information you might need to garner (e.g.
about benefits) in order to help patients with
this aspect of their rehabilitation
Analysing the decision to return to
work
• Which aspect of work was the patient unable to
deal with when s/he gave up?
• Would the patient be returning to the same job?
• Which bits of returning to work will be
enjoyable and manageable, and which bits are
likely to cause problems?
• (What is motivation for return to work – can
motivational interviewing techniques be useful?)
Contents of session
• Aims of session
• When to return to work
• How to go about returning to work
• Dilemmas and pitfalls
• Benefits and finances
Judging when to return to work
• How would a patient know when s/he is
ready to return to work?
• What does a patient need to have
accomplished in treatment?
– Physical stamina and conditioning
– Regular sleep pattern
– Improved concentration and mental functioning
– Ability to withstand stress
Need also to take into account other
factors
• Transport to and from work
• Child care issues
• Getting some (more) help in the home
• Leisure and social commitments (not a good
idea to have to give up too much in order to
return to paid employment)
• Realistic time-scales
48
 The patient’s work history Considering the options
• Does patient want/have to return to the same job?
• How did the patient give up work – • Can s/he break back into world of work gently?
voluntarily, under duress, made to leave etc. – Education
• Has there been any dispute over benefits? – Voluntary work
• Has the patient been in the position of – Working at home
– Part-time working
having to prove that he/she was ill?
– Return to a less demanding job
– Lateral thinking!
• Help patient to design a return to work
programme

What can patient expect when s/he How to deal with set-backs at work
returns to work?
• Try not to catastrophise or engage in other
• Increased symptoms? – which symptoms? unhelpful thoughts
why?
• Look at progress made
• Will patient feel anxious about return to work?
– what are the likely effects of anxiety? • Patient understands this illness and can
• Focus on the benefits of return to work work out what to do
– Maintain activities
• How will patient maintain activity and
relaxation programme in conjunction with – Avoid ruminating on symptoms - have
work? confidence in the programme

Financial and practical considerations

• Patients need to know what is available for them, and
how working will affect their financial situation. • What do you need to find out about in order
Returning part-time might not be financially possible. to help patients better?
• New Deal for Disabled People – government initiative to
• Where will you look for information and
allow people who are receiving disability benefits to get
back into work
where will you direct them?
– 0800 137 177
– www.newdeal.gov.uk
– www.dwp.gov.uk
– Action for ME’s magazine “Interaction”

49