Mary Berukoff
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 belief 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 developers, psychiatrists, teachers, farmers, accountants, business owners, lawyers, physiotherapists, and insurance brokers. They are mothers, fathers, wives, husbands, sons, daughters, sisters, brothers, and friends. They have said yes to health 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 Multiple Sclerosis. It may relapse and remit or slowly progressively get worse to total 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 lifetime you will develop problems with walking, talking, seeing, thinking, pain, urinary control, fatigue, spasticity.
You may lose your wife or husband in a divorce (very common), family, job, ability to write or drive, the privacy of your home. You may lose your self-esteem, dignity 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 little hope.
Therein begins the struggle for humanitarian and equal health rights against a conspiracy 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 models (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 that the body’s own immune cells caused the inflammation which damaged the fatty myelin sheaths around the neuronal axons of the brain and spinal cord. This demyelination lead to scarring and lesions which caused a broad spectrum of mental and 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 ultrasound 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 claimed it as their specialty. In fact, as this story unfolded, an ownership held with 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 the body’s own immune cells attacked the neurons, creating cellular deficits that needed to be modulated. New drug therapies were created for progressive subtypes to disarm the natural-turned-rogue immune system and protect the brain from these 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 disabilities and, like one stone at a time, added reinforcement to this Fortress although 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 billion dollars annually spent by patients or covered by health plans to drug manufacturers based on neurologists’ prescriptions who also received a percentage of sales.
It was a natural collusion with a host of pharmaceutical companies keen to set up their labyrinth of laboratories to explore numerous drug therapies. Various breakthrough 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 initiated to enroll, allocate, follow-up and do a “blinded or non-biased” analysis of data. The larger the base, the easier it was to find the required 9% short term positive 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 risks.”
Throughout the years, many patients looked toward a charitable organization originally set up to help their disability needs and raise funds. But, as business grew, tall walls appeared behind which sat clinical neurologists acting as scientific advisors as well as various hand-picked board and staff members with rudimentary medical understanding, if any. In fact, neurologists had an obvious vested 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 and Teva.
This “charitable” organization fed their brand of information to the public, determined 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 quality of life and death for MS patients.
In fact, this one charity had paid out nearly NINE million dollars for one neurologist’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 from 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 networks who also contributed funding and research grants. They even managed to build a bridge to Institutes of Health Research with an open advisory road to top Federal Health Politicians. Occasionally some outrage would spark in these hallowed halls such as when a director of a habitually bad drug company was appointed to the Governing Council for Health Research. This Big Bad Pharma who had been proven to “persistently engage in illegal marketing practices, bribing physicians and suppressing adverse trial results” and had been “fined $3 billion in criminal convictions” now had a representative on the privy council to the top Federal Minister!
How else could Profiteer’s Conspiracy be defined within this Fortress? This was a collaborative network to create synergy and tools for better and stronger drugs where BIG PHARMA gave money to charitable societies and research institutes appointed by duly elected governments who now could influence policy makers.
It was the only Behemoth Conglomerate in town and it grew more powerful sustaining itself on the broken bodies and lives of MS citizens. They were the gatekeepers 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 government and mass media itself.
It was late last year when a different kind of news blew over the land. On the horizon, appeared a team, led by an Italian vascular surgeon and researcher called Dr. Paolo Zamboni, with an opposing theory. His long term research suggested that MS involved a vascular circulatory problem referred to as chronic cerebrospinal 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 through the Central Nervous System could possibly damage nerve tissue and lead to scarred lesions and immune responses rather than the body’s own destructive auto-immunity caused a tidal wave in the MS community. What if, Multiple Sclerosis was a vascular or plumbing problem better treated interventionally rather than with life-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 decades, if not ever. On one hand, there was major international support and continued 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 locked the doors to any innovative research outside of their buttresses. Ethically and morally, long suffering MS citizens had no explanation. Financially, the shadow of the Fortress was upon them.
The good news was, worldwide, there was growing interest by insightful researchers to further investigate this plausible biological pathway to rationalize this terrible disease. CCSVI was readily recognized as a syndrome in which blood flow from the brain was compromised and that it is a disease state that by itself required treatment. Different research groups put together imaging studies using magnetic resonance venography to show more than 95% of MS patients also have narrowed or blocked veins. This became the accepted gold standard for the determination of CCSVI.
Around the globe, clinics were setup to treat these restricted veins with minimal 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 clinical research to determine the safety and effectiveness of interventional treatments. These are the same doctors who do angioplasty on blocked arteries for 2 million people per year world wide.
Teams of researchers started teaching doctors and technicians how to test for vein abnormalities using ultrasound. Fully fledged protocols by eminent physicians for both testing and treatment were required. World renowned research scientists 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 medical community.
Mainstream neurologists criticized their peers, with fears and outright false statements, crying out this is a hoax, a fraud, an overwhelming lack of evidence and you can’t balloon veins...they will collapse. It was clear that neurologists simply did not have the training to deal with the meaning of bilateral jugular stenosis 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 one plane rather than multiple planes. The rebuttals by renowned scientists were not unpublished in the same papers. Such omission of other important data and literature was most troubling.
Interventional radiologists with 35 years experience were put under review by Internal Review Boards to see if patients could be harmed with vein angioplasties.
Vascular surgeons who opened up restricted MS veins were censured and their clinics 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 designed to suppress the immune system. There were no profits to be made with balloon 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 awarded 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 research 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 consistent web about one previous migrating stent and one death which the family attributed to drugs rather than surgery. But angioplasty was not experimental and was accepted as medical treatment without the MS equation. Positive results were 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 restricted veins and significant blood flow delays that seemed to validate the new theory. Second, they found themselves trapped in a bureaucratic maze. Family doctors could not support their referral requests to open their constricted veins because only neurologists could do that, but wouldn’t. They could not understand why their neurologists, trusted for years, would not have welcomed a new, safe, low cost and potentially effective option for MS treatment given the very low effectiveness of the current drugs.
They became the medical untouchables branded with both MS and CCSVI. They were prisoners 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 improvements.
It started with one, two, three people...then hundreds grew to thousands. They documented their liberation journeys in reports and videos…impressive anecdotal evidence that CCSVI beat any drug statistics they had ever seen.
Their clarion call was, “Proper blood matters and we deserve to be treated like everyone 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 TRIALS. 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 treatment. People must be submitted to controlled, double-blind randomized trials that may work for pharmaceutical agents but do not work as well for individual structural or biological deficits. Find 50% of MS people and a group of non-MS people with similar profiles and comparatively image their veins. No trials...no evidence...no evidence...no funding...no funding...no trials.
Second, the MENTALITY where neurologists thought they owned the disease was fundamentally wrong…as a patient you were not allowed any second opinions and no choices. All MS patients were banned from interventional procedures until their research proved its efficacy. They had done everything possible to exclude any new opinions 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 were also underestimated. CCSVI sites opened up a channel of real empowerment that helped to democratize knowledge, foster openness, break down barriers, and connect people. Daily, at the grassroots level, people questioned and re-evaluated theories and personal experiences. Forums and blogs gathered a data base of research and such a sheer number of positive testimonials following this procedure. Patient advocacy 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 understood.
Reason One. This struggle is based on a just, reasonable society that excludes greed, ego, and profits.
We want a reasonable society outside the shadow of the Fortress and fear of backlash where one professional doctor, a neurologist, should be able to say to another 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 and take the FDA approved drugs. But I will also accept the fact that I do not know everything about this perplexing disease. I will refer you to get a second opinion, if you wish.”
We want a primary care system where interventional radiologists will work with neurologists 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 research has become something much different from real scientific research, motivated more by prestigious universities and corporate finances with double standards...just look at the advertisements and side effects. The people pay for it with insurance premiums, drug prices, and taxes. CCSVI, or faulty veins, is a condition, not a treatment. There are abundant data now that demonstrate that a significantly higher % of persons with MS have CCSVI as compared with the general population. More rigorous, peer reviewed studies need to progress with angioplasties on neck veins, performed elsewhere in the body as a standard of practice – both with and without stents – for more than a decade. Vascular specialists who understand vein abnormalities and blood flow must be allowed to do research beyond what neurologists believe that CCSVI is not a causal MS factor. But, what if, the possibility exists? Preserve us from this maddening hypocrisy that the keepers of the Fortress supplicate their serious concern for patients’ risk-free safety with their own focused clinical trials and approved drugs. At this time, self assessment and 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 their work.
Reason Three: This struggle will continue in the name of ethics and the Hippocratic Oath…physician, do no harm. It has been postulated for decades and overwhelming current evidence shows that it is more reasonable to assume that CCSVI precedes autoimmunity. Therefore, a person who is newly diagnosed with MS, cannot be denied access to diagnostic tools by professionals and immediately get all the necessary veins fixed and tracked as a social and moral right. Biological mechanisms such as narrowed veins or arteries need to be treated with mechanical interventions before any arsenal of life-long drugs only to be used as a secondary precedence.
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 against in my own 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 people and partially clamp their veins as controls and see if MS symptoms develop over 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) without 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 that divert nearly 50% of annual expenditures when alternative treatments that cost $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 Fortress when governments, ruled by Health Authorities, actually abide by these astronomical costs, and rising. Plus add the cost of social programs, housing and homecare, much of which could be eliminated with improved symptoms from better blood flow.
Reason Six: This struggle will persevere through the context of change. We acknowledge 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 thesis; and the tension between the two finally being resolved by means of a synthesis.” There have never been absolute medical algorithms...just relative hypothesis of what may work better. If the neurologists feel besieged now, how will they feel when vascular anomalies become necessary priorities for drug free treatment for MS? It is understandable that they may not want to go back on years of training and prescribed therapies but they must restructure their Fortress in order to integrate this new paradigm and work with multi-disciplines and growing world wide objective testing before and after treatment with adequate follow-up…the true nature of scientific advancement.
Reason Seven: This struggle will continue because people have a new perception of 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 proliferation, their efficacy is now debatable and every leading medical institution has noted, liver damage, once rare, is now the leading cause for withdrawing a drug. 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 biology or physiology with imaging and basic mechanical intervention when possible. What 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 other 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 Sickness?
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 Profiteer’s Conspiracy without compassion within the Fortress. New non-profit societies will arise with the mission to help individual health choices not berate or block them. A proper diagnosis of vein blockage or stenosis and reflux will follow with angioplasty. We will applaud the pioneering doctors who are reversing this vascular condition and reporting a growing field of evidence. We will continue to step away from our canes and scooters and enjoy dramatic results such as a restored ability to hike, bike and run marathons. We will praise patients who are finding new symptom relief such as less fatigue, brain fog, and remission from their MS. We are not vulnerable misguided patients who need to be saved by long winded clinical trials. We are informed, articulate, quite aware of risks versus benefits and, 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 liberated feeling that we can be our own masters once again in our family’s eyes and legacy.
(photo courtesy of Danial Neil)We will take our connections and influence and continue speaking out, looking for 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 of our Medicare system. Our first class doctors must not be shut down by the forces of the Fortress but allowed to shine on the world’s stage of new research, discovery and celebration. Our country and our citizens deserve better.
Mary Berukoff
No comments:
Post a Comment