How the Gentle CCSVI Rebels Will Win the MS Liberation War...

7 reasons why
Truth must be experienced rather than told because language fails to convey beli
ef and is only the barest shadow of reality...Plato

A Tale of Woe and Hope about a Profiteer’s Conspiracy, Personal Health Freedom and
a New Medical Paradigm
Who are these gentle CCSVI rebels? They are nurses, engineers, real estate devel
opers, psychiatrists, teachers, farmers, accountants, business owners, lawyers,
physiotherapists, and insurance brokers. They are mothers, fathers, wives, husba
nds, sons, daughters, sisters, brothers, and friends. They have said yes to heal
th freedom against forces that would control them. They want to change to a more
compassionate world that listens and cares.
They share a common bond…they are prisoners of a devastating disease called Multip
le Sclerosis. It may relapse and remit or slowly progressively get worse to tota
l disability. Who will be next? If you are young or female you may have greater
chance to be next. If you are among the unfortunate who are struck, it will feel
like a civil war has broken out inside your body. For ensuing years, over a lif
etime you will develop problems with walking, talking, seeing, thinking, pain, u
rinary control, fatigue, spasticity.
You may lose your wife or husband in a divorce (very common), family, job, abili
ty to write or drive, the privacy of your home. You may lose your self-esteem, d
ignity and independence. When you are finally bedridden, unable to swallow, the
ravages will be complete. And there is no cure and, until recent events, very li
ttle hope.
Therein begins the struggle for humanitarian and equal health rights against a c
onspiracy that keeps sick people sick as long as possible for profits.
The MS affliction was first recognized 150 years ago but what caused it has been
debated ever since. Up until the 1930s, the prevailing thought was that MS was
initiated by venous congestion (Dr. Putnam). But a new theory using animal model
s (EAE) was put on the table when monkeys were injected with brain extracts from
rabbits and developed scarring possibly caused by immune cells interaction. It
was this theory that took hold that MS was an auto immune problem. It proposed t
hat the body’s own immune cells caused the inflammation which damaged the fatty my
elin sheaths around the neuronal axons of the brain and spinal cord. This demyel
ination lead to scarring and lesions which caused a broad spectrum of mental an
d physical manifestations.
Interestingly enough, over 135 years, some doctors continued to note again that
certain vascular abnormalities caused plaque formation similar to MS, but these
early observations were limited by lack of 3-D imaging tools such as the ultraso
und which are now readily available.
The autoimmune brain damage theory fell into the realm of NEUROLOGY...the study
of disorders of the brain, spinal cord and nervous system and neurologists claim
ed it as their specialty. In fact, as this story unfolded, an ownership held wit
h such an iron fist that no other doctors could take it away without a battle.
Study by study, a research Fortress was built to actualize the hypothesis that t
he body’s own immune cells attacked the neurons, creating cellular deficits that n
eeded to be modulated. New drug therapies were created for progressive subtypes
to disarm the natural-turned-rogue immune system and protect the brain from thes
e marauding autoimmune cells. But for most sufferers, decades of research could
not stop onset, progression or prognosis of this catastrophic disease. However,
new drugs poured out to treat new prototype genetic markers and ongoing disabili
ties and, like one stone at a time, added reinforcement to this Fortress althoug
h all drugs had the disclaimer that the precise way they acted on MS was unknown
.
There was inevitable bridge building...in a physical sense to supply these drugs
and in a symbiotic economic sense. The peak performance would result in ten bil
lion dollars annually spent by patients or covered by health plans to drug manuf
acturers based on neurologists’ prescriptions who also received a percentage of sa
les.
It was a natural collusion with a host of pharmaceutical companies keen to set u
p their labyrinth of laboratories to explore numerous drug therapies. Various br
eakthrough remediating agents appeared in the marketplace: Avonex, Betaseron,
Rebif, Copaxone. Campath, Zenapax, rituximab, dirucotide, cladribine, dimethyl
fumarate, estriol, statins, minocycline, teriflunomide, and many more.
Because of the use of chemical agents large randomized clinical trials were ini
tiated to enroll, allocate, follow-up and do a “blinded or non-biased” analysis of d
ata. The larger the base, the easier it was to find the required 9% short term p
ositive feedback. Stock market prices rose and fell on these trials and sales of
drugs. Their clarion call rang out “drug side effects are better than disease ris
ks.”
Throughout the years, many patients looked toward a charitable organization orig
inally set up to help their disability needs and raise funds. But, as business g
rew, tall walls appeared behind which sat clinical neurologists acting as scient
ific advisors as well as various hand-picked board and staff members with rudime
ntary medical understanding, if any. In fact, neurologists had an obvious veste
d financial interest to maintain the status view of MS as autoimmune and several
served as paid advisors for Big Pharma…Serono, Berlex/Schering, Biogen, Biotec an
d Teva.
This “charitable” organization fed their brand of information to the public, determi
ned what research to do, and what overall policies to lobby the government. In
fact, 50 % of public funding went into administrators’ pockets. The sharpest blow
was when their executives with no medical education, degree, or experience could
take a responsible voice in making the most important decisions about the quali
ty of life and death for MS patients.
In fact, this one charity had paid out nearly NINE million dollars for one neur
ologist’s research on how to turn the body’s own stem cells to produce myelin using
chemotherapy to obliterate the old system and re-planting a new immune system f
rom spinal cord stem cells. The results of this experiment seem to be buried in
archives now.
This non-medical charity built other natural collusions with pharmaceutical netw
orks who also contributed funding and research grants. They even managed to buil
d a bridge to Institutes of Health Research with an open advisory road to top Fe
deral Health Politicians. Occasionally some outrage would spark in these hallowe
d halls such as when a director of a habitually bad drug company was appointed t
o the Governing Council for Health Research. This Big Bad Pharma who had been pr
oven to “persistently engage in illegal marketing practices, bribing physicians a
nd suppressing adverse trial results” and had been “fined $3 billion in criminal con
victions” now had a representative on the privy council to the top Federal Ministe
r!
How else could you define a Profiteer’s Conspiracy within this Fortress? This was
a collaborative network to create synergy and tools for better and stronger dru
gs where BIG PHARMA gave money to charitable societies and research institutes a
ppointed by duly elected governments who now could influence policy makers.
It was the only Behemoth Conglomerate in town and it grew more powerful sustaini
ng itself on the broken bodies and lives of MS citizens. They were the gatekeepe
rs to the SICK ONES who remained confined to these experimental drugs, paid out
exorbitant new drug bills, and burdened the country’s health care system.
But what happened next defies life and death. A seismic paradigm shift appeared
and shook this Fortress to its very foundation.
What was evident was that this reigning monopoly and drug funnel myopia were now
to be judged by international medical peers in the name of medical advancement
and humanitarian rights.
What was not self-evident were the layers of bureaucracy, the buck-passing, and
the degree of infiltration this Conglomerate had made into the corridors of gove
rnment and mass media itself.
It was late last year when a different kind of news blew over the land. On the h
orizon, appeared a team, led by an Italian vascular surgeon and researcher calle
d Dr. Paolo Zamboni, with an opposing theory. His long term research suggested t
hat MS involved a vascular circulatory problem referred to as chronic cerebrospi
nal venous insufficiency or CCSVI. This new theory and evidence showed that the
majority of MS patients had restricted or blocked veins and by opening them with
a common balloon angioplasty, that the majority of patients experienced various
degrees of improvement.
The possibility that a biological mechanism such as abnormal flow of blood throu
gh the Central Nervous System could possibly damage nerve tissue and lead to sca
rred lesions and immune responses rather than the body’s own destructive auto-immu
nity caused a tidal wave in the MS community. What if, Multiple Sclerosis was a
vascular or plumbing problem better treated interventionally rather than with li
fe-long immunomodulatory drugs? It was a Liberation of Hope based on Liberation
of Proper Blood Flow.
It was undoubtedly one of the biggest breakthroughs in MS history in the past de
cades, if not ever. On one hand, there was major international support and conti
nued research to see if vascular blockages in the veins could be associated with
an increased risk of disability progression in multiple sclerosis. But, on the
other hand, a small handful of countries, who particularly touted fair and just
societies, and their governments, academia, hospital boards and charities locke
d the doors to any innovative research outside of their buttresses. Ethically an
d morally, long suffering MS citizens had no explanation. Financially, the shado
w of the Fortress was upon them.
The good news was, worldwide, there was growing interest by insightful researche
rs to further investigate this plausible biological pathway to rationalize this
terrible disease. CCSVI was readily recognized as a syndrome in which blood flo
w from the brain was compromised and that it is a disease state that by itself r
equired treatment. Different research groups put together imaging studies using
magnetic resonance venography to show more than 95% of MS patients also have nar
rowed or blocked veins. This became the accepted gold standard for the determin
ation of CCSVI.
Around the globe, clinics were setup to treat these restricted veins with minima
l invasive balloon angioplasty. MS sufferers now were reporting better benefits
unmatched by any known MS medication.
The Society of Interventional Radiology (SIR) announced its support for clinica
l research to determine the safety and effectiveness of interventional treatment
s. These are the same doctors who do angioplasty on blocked arteries for 2 milli
on people per year world wide.
Teams of researchers started teaching doctors and technicians how to test for ve
in abnormalities using ultrasound. Fully fledged protocols by eminent physicians
for both testing and treatment were required. World renowned research scientist
s offered symposiums to discuss the research and relationship between CCSVI and
MS.
Hundreds of MS patients rallied at legislatures across the country. Thousands of
letters were written to health ministers and politicians…some of whom took up the
call to welcome a new treatment protocol for their citizens.
But in the Fortress, there was fury and vitriol…never before witnessed in the medi
cal community.
Mainstream neurologists criticized their peers, with fears and outright false st
atements, crying out this is a hoax, a fraud, an overwhelming lack of evidence a
nd you can’t balloon veins...they will collapse. It was clear that neurologists si
mply did not have the training to deal with the meaning of bilateral jugular ste
nosis or venoplasty.
Two research papers suddenly appeared in the Annals of Neurology denouncing the
connection. (Doepp et al study). They were widely publicized and also flawed in
that they only looked at a very small part of the jugular, and scanned in only o
ne plane rather than multiple planes. The rebuttals by renowned scientists were
not unpublished in the same papers. Such omission of other important data and li
terature was most troubling.
Interventional radiologists with 35 years experience were put under review by In
ternal Review Boards to see if patients could be harmed with vein angioplasties.
Vascular surgeons who opened up restricted MS veins were censured and their clin
ics closed down but they could still open up non-MS vein restrictions.
Some pharmaceutical companies tried to hasten their latest trials to fast track
new drugs. They could stand to lose untold billions in their sales of drugs des
igned to suppress the immune system. There were no profits to be made with ballo
on angioplasty.
One “charitable” lobbyist proudly petitioned his government to hand over 10 million
dollars for MS research. Part of that was received for 7 CCSVI labeled studies a
warded to neurologists to find IF blocked veins really did exist. No treatments
were allowed. Side by side, stood an experienced vascular surgeon who also said
that the CCSVI blood flow problems were real, but he was not granted any researc
h funding.
Media and newspapers called the new procedure experimental, controversial, risky
, blind alleys, high-tech faith healing…even a unicorn fantasy. They spun out a co
nsistent web about one previous migrating stent and one death which the family a
ttributed to drugs rather than surgery. But angioplasty was not experimental and
was accepted as medical treatment without the MS equation. Positive results wer
e termed “placebo” and tossed about like leaves in an autumn windstorm. Most had not
walked this dark downhill MS tunnel of devastated lives and dreams.
And so it came to be that a camp of CCSVI rebels started to appear. First, with
curiosity, people did basic MRI investigations and, indeed, discovered restricte
d veins and significant blood flow delays that seemed to validate the new theory
. Second, they found themselves trapped in a bureaucratic maze. Family doctors c
ould not support their referral requests to open their constricted veins because
only neurologists could do that, but wouldn’t. They could not understand why thei
r neurologists, trusted for years, would not have welcomed a new, safe, low cost
and potentially effective option for MS treatment given the very low effectiven
ess of the current drugs.
They became the medical untouchables branded with both MS and CCSVI. They were p
risoners of their own disintegrating disease and prisoners in a conspiracy that
allowed no endovascular intervention that other citizens could readily receive.
There were no other options. Without treatment, the total disability clock kept
ticking. There was no hope with lifelong drugs.
Bravely, a few dared to escape the Fortress, to travel at great personal expense
to foreign clinics to open their diagnosed venous blockages and report their im
provements.
It started with one, two, three people...then hundreds grew to thousands. They
documented their liberation journeys in reports and videos…impressive anecdotal ev
idence that CCSVI beat any drug statistics they had ever seen.
Their clarion call was, “Proper blood matters and we deserve to be treated like ev
eryone else.”
And still there was no compassion from the Fortress. But shortly, it faced three
huge frontal attacks.
First, their Main Weapon of Attack was self serving, double-speak CLINICAL TRIAL
S. This was the methodology by which the Fortress had thrived in the past. Only
10 more years of research could usher in enough scientific proof to validate tre
atment. People must be submitted to controlled, double-blind randomized trials
that may work for pharmaceutical agents but do not work as well for individual s
tructural or biological deficits. Find 50% of MS people and a group of non-MS pe
ople with similar profiles and comparatively image their veins. No trials...no e
vidence...no evidence...no funding...no funding...no trials.
Second, the MENTALITY where neurologists thought they owned the disease was fund
amentally wrong…as a patient you were not allowed any second opinions and no choic
es. All MS patients were banned from interventional procedures until their resea
rch proved its efficacy. They had done everything possible to exclude any new op
inions on committees or studies...even with blatant pharmaceutical conflicts of
interest. They now had to answer whether the physical health of MS patients was
more important than their financial health. This became a Medical Act and human
rights issue and the basis of legal civil actions.
Third, the INTERNET and the unprecedented power of SOCIAL MEDIA was also underes
timated. CCSVI sites opened up a channel of real empowerment that helped to demo
cratize knowledge, foster openness, break down barriers, and connect people. Dai
ly, at the grassroots level, people questioned and re-evaluated theories and per
sonal expereinces. Forums and blogs gathered a data base of research and such a
sheer number of positive testimonials following this procedure. Patient advocac
y was also rewriting medical history.
Finally, now that the characters, plot and themes have been disclosed, the seven
reasons why CCSVI Rebels will win this MS Liberation War will be better underst
ood.
Reason One. This struggle is based on a just, reasonable society that excludes g
reed, ego, and profits.
We want a reasonable society outside the shadow of the Fortress and fear of back
lash where one professional doctor, a neurologist, should be able to say to anot
her professional doctor, a vascular specialist or to a MS patient,
“I have my theory...my 60 year old curriculum. You may follow it, if you want to a
nd take the FDA approved drugs. But I will also accept the fact that I do not kn
ow everything about this perplexing disease. I will refer you to get a second op
inion, if you wish.”
We want a primary care system where interventional radiologists will work with n
eurologists and medical issues will be best decide by qualified doctors from all
disciplines not bandied about by lobbyists or politicians.
Reason Two. This struggle will continue in the name of scientific studies where
treatment is not exclusive from CCSVI research. Perhaps clinical medical researc
h has become something much different from real scientific research, motivated m
ore by prestigious universities and corporate finances with double standards...j
ust look at the advertisements and side effects. The people pay for it with insu
rance premiums, drug prices, and taxes. CCSVI, or faulty veins, is a condition,
not a treatment. There are abundant data now that demonstrate that a significant
ly higher % of persons with MS have CCSVI as compared with the general populatio
n. More rigorous, peer reviewed studies need to progress with angioplasties on n
eck veins, performed elsewhere in the body as a standard of practice – both with a
nd without stents – for more than a decade. Vascular specialists who understand ve
in abnormalities and blood flow must be allowed to do research beyond what neuro
logists believe that CCSVI is not a causal MS factor. But, what if, the possibil
ity exists? Preserve us from this maddening hypocrisy that the keepers of the Fo
rtress supplicate their serious concern for patients’ risk-free safety with their
own focused clinical trials and approved drugs. At this time, self assessment an
d personal anecdotes are the only validation factors we have until the Fortress
opens its heavy doors and allows proactive CCSVI researchers and doctors to do t
heir work.
Reason Three: This struggle will continue in the name of ethics and the Hippocra
tic Oath…physician, do no harm. It has been postulated for decades and overwhelmin
g current evidence shows that it is more reasonable to assume that CCSVI precede
s autoimmunity. Therefore, a person who is newly diagnosed with MS, cannot be d
enied access to diagnostic tools by professionals and immediately get all the ne
cessary veins fixed and tracked as a social and moral right. Biological mechani
sms such as narrowed veins or arteries need to be treated with mechanical interv
entions before any arsenal of life-long drugs only to be used as a secondary pre
cedence.

Reason Four: This struggle will continue on the world wide internet. Passionate
cries will be shared by individuals who call out to the dungeon keepers: “How can
so few hold back the health and well being of so many. I just want to cry when
I think that this is my life and my body and they want to drug me and radiate me
with chemo drugs all in the name of science. I AM NOT A LAB RAT!!!!!!”
“The mark of MS makes me feel like a concentration camp victim discriminated in my
country.”
“When researching drugs, the real nature of double-blind study needs to have both
sick people and non-sick people to act as controls for evaluation. So does this
mean that the best way to evaluate the MS-VEIN connection is to take Non-MS peop
le and partially clamp their veins as controls and see if MS symptoms develop ov
er 10 or more years. Any volunteers?”
A letter addressed to Canada on the death of a young father and husband who died
from MS complications waiting for an angioplasty.
Patients have suffered through nearly 60 years of animal based research (EAE) wi
thout finding better answers. Perhaps we need to find a new model?
Reason Five: This struggle will continue to enter political arena.
Voting taxpayers will “take to tax” their politicians in charge of health budgets th
at divert nearly 50% of annual expenditures when alternative treatments that cos
t $1500 one time can possibly replace disease-modifying drug costs of 20,000 to
30,000 dollars a year paid by tax payers. Imagine the strangle hold of this Fort
ress when governments, ruled by Health Authorities, actually abide by these astr
onomical costs, and rising. Plus add the cost of social programs, housing and ho
mecare, much of which could be eliminated with improved symptoms from better blo
od flow.
Reason Six: This struggle will persevere through the context of change. We ackno
wledge that Change is a process comprised of “three stages of development”: a thesis
, giving rise to its reaction; an antithesis, which contradicts or negates the t
hesis; and the tension between the two finally being resolved by means of a synt
hesis.” There have never been absolute medical algorithms...just relative hypothes
is of what may work better. If the neurologists feel besieged now, how will they
feel when vascular anomalies become necessary priorities for drug free treatmen
t for MS? It is understandable that they may not want to go back on years of tr
aining and prescribed therapies but they must restructure their Fortress in orde
r to integrate this new paradigm and work with multi-disciplines and growing wor
ld wide objective testing before and after treatment with adequate follow-up…the t
rue nature of scientific advancement.
Reason Seven: This struggle will continue because people have a new perception o
f reality. Disease is not caused because the body lacks certain drugs and only
drug replacement can restore the body’s homeostasis. After decades of drug prolif
eration, their efficacy is now debatable and every leading medical institution h
as noted, liver damage, once rare, is now the leading cause for withdrawing a dr
ug. Liver testing is a booming industry. Imagine a life-long sentence to MS drug
overload. A certain new MS oral drug has already caused 12 deaths and 63 cases
of brain infection. The better focus is better understanding of individual biolo
gy or physiology with imaging and basic mechanical intervention when possible. W
hat if, as early evidence indicates, that Multiple Sclerosis is the tip of only
one iceberg? What if, there is a connection between venous restrictions and othe
r neural problems such as Alzheimer’s? So, here’s the undisclosed reaction. Yes, is
this why Big Pharma’s legions are fighting tooth and nail to protect the Fortress,
their shareholders, and their million dollar lifestyles on Big Incurable Sickne
ss?
We are a rapidly growing band of gentle CCSVI rebels…at least 75 new people daily
unblock their veins, just not in our own country. We will not be confined by Pro
fiteer’s Conspiracy without compassion within the Fortress. New non-profit societ
ies will arise with the mission to help individual health choices not berate or
block them. A proper diagnosis of vein stenosis and reflux will follow with angi
oplasty. We will applaud the pioneering doctors who are reversing this vascular
condition and reporting a growing field of evidence. We will continue to step aw
ay from our canes and scooters and enjoy dramatic results such as a restored abi
lity to hike, bike and run marathons. We will praise patients who are finding ne
w symptom relief such as less fatigue, brain fog, and remission from their MS. W
e are not vulnerable misguided patients who need to be saved by long winded clin
ical trials. We are informed, articulate, quite aware of risks versus benefits a
nd, for the first time, we see this breakthrough as one of the most exciting MS
medical discoveries with a real light of hope…no miracle catheter or cure…just a lib
erated feeling we can be our own masters once again in our family’s eyes and legac
y.
We will take our connections and influence and continue speaking out, looking fo
r a balanced truth and democratic rights. We are no longer hostages and proclaim
our freedom. Now we must connect and work hard to break the hostage mentality o
f our Medicare system. Our first class doctors must not be shut down by the for
ces of the Fortress but allowed to shine on the world’s stage of new research, dis
covery and celebration. Our country and our citizens deserve better.