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Time to liberate ‘liberation’ therapy from MS

Anne Kingston explains why we’ve reached the WTF moment in CCSVI research


 

Last week’s cancellation of a clinical trial in Albany, N.Y., researching treatment of CCSVI is a big setback for those trying to glean scientific insight into whether venous angioplasty mitigates multiple sclerosis (MS) symptoms in people with MS who have obstructed venous flow. It’s very bad news for the Saskatchewan government, which allocated $2.2 million to fund the trial and recruited volunteers to travel to the U.S. And it is a major blow for those who’d taken part in the trial or were lined up to go. But, like all failures, it’s also instructive. And the lesson here? That the best thing for CCSVI research, moving ahead, would be for the so-called “liberation” treatment to be liberated from MS itself—more specifically, from its exclusive relationship with the degenerative condition, a point CCSVI activists have been making for years.

For those not up on the medical drama, here’s a recap: In 2006, Italian venous specialist Paulo Zamboni posited a new condition he’d identified as “cerebro-spinal venous insufficiency,” or CCSVI, was closely related to MS. Typically, vascular experts don’t have anything to do with MS; neurologists are the traditional MS gatekeepers. The only reason Zamboni was investigating it was because his wife was afflicted. (That said, MS had been linked to the vascular system in medical research before famed French neurologist Jean-Martin Charcot classified it in 1868, but a correlation had never been proven.) Employing ultrasound technology, Zamboni saw a condition in the extra-cerebral veins with similar markers to venous insufficiency in legs, a condition routinely treated. Left untreated, venous insufficiency in the legs can lead to serious debilitation and medical complications. Zamboni found CCSVI treated by angioplasty reduced, and even eliminated, symptoms experienced by people with MS.

When CCSVI made big headlines in Canada in 2009, it was as a “cure” (without the corroborating science) for MS, not as a separate vascular condition linked to neurodegeneration. That swept it into the MS infrastructure, a research-pharmaceutical complex populated by neurologists and MS societies that is currently based on the unproven theory that MS is an autoimmune condition. The autoimmune theory, taught in medical schools, has buttressed decades of research and given rise to a drug industry estimated to grow to $20 billion by 2017. So it isn’t surprising that most MS neurologists were skeptical, even dismissive, of CCSVI from the get-go. (Imagine BlackBerry execs being asked to critique the first iPhone, and you’ll get the idea.) Provinces refused to cover scanning or treatment of CCSVI, making the valid point that they couldn’t cover every unproven treatment simply on the basis of patient advocacy. (Provinces do, however, cover treatment for venous insufficiency in legs, and for angioplasty of extra-cerebral veins for other conditions.) When MS patients began travelling offshore for treatment in the hundreds, and then thousands, then militating at home, the government, neurologists and MS societies acquiesced and agreed to double-blinded randomized clinical trials, the cornerstone of drug approval. Clinical trials for drugs are themselves a huge industry, particularly in the lucrative MS drug arena, with neurologists being paid upward of $5,000 for every patient recruited.

The clinical-trial process has been under scrutiny of late, criticized for lack of transparency, suppression of negative data, even whether they work at all. The issue of making medical treatments conform to a drug model has also raised ethical concerns. Many treatments, including angioplasty, are introduced without them. Just last year, the Ontario government gave special dispensation for some patients to receive renal denervation treatment, an experimental procedure to reduce blood pressure for patients who don’t respond to drugs. It was backed by only one study of 106 patients funded by a medical-device company poised to profit from its introduction. The Canadian Medical Association, quick out of the gate to say CCSVI must be “based on science not hope,” called the unproven renal denervation treatment a medical “breakthrough,” despite concerns voiced within the medical community. But renal denervation treatment differs from CCSVI treatment for MS in significant ways: It didn’t challenge any medical orthodoxies or interfere with pharmaceutical therapies.

Tethering CCSVI to MS created an either-or equation. Either CCSVI caused MS or it didn’t. Either CCSVI was found in people with MS exclusively or it wasn’t. Either CCSVI could cure MS or it couldn’t. Any potential benefit in new insight into the understudied role of the venous system in neurodegeneration was eclipsed. Caught in the middle were people diagnosed with MS, a widely heterogeneous condition, with no cure. MS drugs, which run as high as $60,000 per patient per year, and whose side effects include death, have failed many. Now, studies indicate the drug approval has been based on benchmarks that have not been validated and that, contrary to claims, they are ineffective at halting progression.

The provinces’ varied responses to CCSVI reflected an increasingly decentralized medical system—Ontario ignored it, while New Brunswick set up a fund to subsidize MS patients travelling offshore for treatment. Newfoundland and Labrador funded a small observational study based on patients who’d travelled to various clinics that reported in 2012 “no measurable” change in MS symptoms. The feds flip-flopped before finally announcing in 2011 that they would fund phases I and II of a Canadian clinical trial, with 100 people to look at safety and efficacy. That trial began recruiting patients this year, with results expected by 2016 at the earliest.

Saskatchewan was the first province to pledge actual clinical trials, putting up $5 million and issuing a call for proposals in October 2010. When Premier Brad Wall announced his government was sending 86 patients to the U.S. to participate in a phase III clinical trial in January 2012, it was a rogue move destined to resonate in the province that’s home to Canada’s highest incidence of MS. But there was also irony: The home of Canada’s much-vaunted universal health care program had to ship residents out of country for medical research.

Now, two and a half years later, that research is kaput. The trial’s principal investigator, interventional radiologist Gary Siskin, needed 197 participants for the study to have statistical credibility. But only 23—six from Canada, 17 from the U.S.—had participated. Others were lined up to come. The problem wasn’t Saskatchewan, Siskin tells Maclean’s. “They were confident that they could get their 86. It was me who was not confident we could get the rest.” Failure to do so posed ethical concerns about making people travel and receiving funding, without confidence they’d be able to produce a statistically valid study, he says.

Numbers provided by the Saskatchewan government indicate interest was high: 682 volunteered. Of that pool, 533 met criteria for age and residency. Then 130 were randomly drawn for the first round of assessment; 95 were identified by the Albany team as eligible candidates. Of this number, 32 had been assessed by a Saskatchewan neurologist; 13 were awaiting assessment. Sixteen had received the go-ahead to travel to Albany. The first patient was sent in August 2012; in total, seven were sent. One didn’t meet final criteria; of the six, half were treated, half were given a sham procedure. Another nine were ready to go.

As Siskin tells it, the challenge was recruiting the remaining 111 patients in the U.S. A big impediment, he believes, is the fact that only half of participants would receive treatment; the other half, the “placebo arm,” would be given a sham procedure. “If we said, ‘Everyone who signs up is going to be treated,’ then I’m sure we would have had people banging down the door.” There was also a climate of diminished interest, in light of negative CCSVI studies, including a much-publicized study out of Buffalo University based on 19 participants that concluded CCSVI treatment was ineffective. That study was too small to be definitive, Siskin says. “I believe they made conclusions that were outside of what was statistically appropriate.”

Saskatchewan Health Minister Dustin Duncan is disappointed, he tells Maclean’s: “We wanted to be part of answering whether CCSVI was, or was not, part of the solution of symptomatic relief for MS patients. But without the science behind it, we cannot say this is the standard of care.” There were bumps. It took a year to send the first volunteer to Albany, in part, due to a change in neurologists during the screening process. “Part of it was the availability of neurologists that can dedicate the time to this.” There was also a divergence of what Siskin was looking for in his protocol for the assessment and what the neurologists in Saskatchewan believed that protocol should be, he says. Those close to the trial say there were other snafus: The FDA imposed stringent parameters on the level of disability participants had to have; there was concern some patients sent from Saskatchewan were very disabled, even though it’s understood that venoplasty is most effective for those who still have some mobility. There were also reports neurologists in the U.S. were discouraging patients from participating and that funding was a challenge.

The government was warned in July that the trial could be shut down, says Duncan. They tried to keep it afloat by reaching out to other provincial health ministries to ask them if they would help recruit more participants, with no luck: “We knew that was a long shot; other provinces have made their own decisions about involvement in this type of research.”

Saskatchewan MLA Mark Docherty, diagnosed with MS in 1998, is also disappointed by the cancellation. He travelled offshore twice for CCSVI treatment: The first time, he experienced immediate improvements, including sensation in his fingertips for the first time in a decade. His mobility, balance, energy and sensitivity to heat also improved. It lasted three months before his veins closed again. The second treatment, in 2011, did not have as pronounced benefits, but he experienced better heat sensitivity and energy. Docherty ran for the Saskatchewan Party in 2011, in part, because of its proactive attitude toward CCSVI research, he says: “I have seen and felt first-hand the benefits, as well as the hope and merit of advancing and investigating the hypothesis and, ultimately, the science further.”

Siskin, who began treating CCSVI at his clinic in late 2010 and has performed it several hundred times, says the end of his trial hasn’t dampened his commitment to CCSVI research. “It has nothing to do with my belief that CCSVI is a true disease entity, or my belief that treating people for CCSVI makes a difference for patients—clinically or in their overall quality of life,” he says. His experience treating patients has been largely positive, he says. “But I can’t prove that in a way that would be scientifically appropriate.”

The problem, he says, is that many MS neurologists feel that, if CCSVI can’t be consistently diagnosed, then it doesn’t exist: “I respect that they’ve been asking questions that the interventional radiologist community has not answered to their satisfaction. But the neurology community has turned to a lot of those diagnostic studies and said, ‘See, it’s not consistently diagnosed with ultrasound, therefore, it must not exist; therefore, why would you treat it?’ ” There’s a certain level of proof that the neurology community expects before they’re going to get behind a treatment for their patients, Siskin says. “And I think the one thing we can all agree on is that the burden of proof has not yet been met, when it comes to CCSVI.”

Science and patients’ experiences are at odds, Siskin says: “A literature review of all of the CCSVI studies over the past year or two reveal the vast majority of the ones that focus on treatment are positive. But when you look at the studies that have focused on the diagnosis of CCSVI—the ability of ultrasound to diagnose, the ability of MRI to diagnose—they’ve all been negative. But, once we actually go in there and look at veins, if we see an area of narrowing and treat it, many patients say they feel better. I think that’s the best way to summarize the state of knowledge right now.”

Siskin believes the research process was hijacked when CCSVI was introduced as a “miracle cure” for MS. “This was broadcast around the world as an explanation and/or cure for MS. If you could turn back the clock and say, ‘We think we found some condition characterized by narrowing of the veins, and this condition is associated with a certain group of symptoms, and if you treat this condition, those symptoms get better for a certain period of time,’ I don’t think we’ve been having this conversation. But because it came out as a cure for MS, you riled up a community of physicians and patients in a way that wasn’t substantiated at that time.” Siskin would like to see CCSVI studied and described as an isolated vascular condition, then investigated to see if it’s associated with other diseases, such as MS, Parkinson’s or Alzheimer’s.

Salvatore Sclafani, a Brooklyn-based interventional radiologist, agrees. “We need to put MS on the back burner and focus on the symptoms,” says Sclafani, who has performed some 500 CCSVI treatments. “It’s about whether venous outflow obstructions can result in neurological symptoms. It is about whether opening venous outflow improves some clinical manifestations often seen in MS.” CCSVI has been “politicized, discredited, misunderstood, denigrated, slandered and rejected out of hand,” he says. He would like to see a movement away from whether CCSVI causes MS and toward a focus on the most effective treatment techniques and an understanding of which patients are most likely to benefit. “Failure to do so would do an injustice to those who have venous obstructions of the cerebro-spinal venous outflow,” he says.

Now, Saskatchewan is sitting on slightly less than $5 million earmarked for CCSVI research; only $150,000 has been spent. Meetings are being planned with the research community, patients and other “MS stakeholders,” to figure out the next move.

“Research may involve the “liberation” therapy, but we’re realistic that may not be possible in a research context, so we may be looking outside of liberation,” the health minister says. There is no research currently in the works at the level of the Albany trial, which was more evolved than the Canadian clinical trial, he says: “We felt Dr. Siskin was taking the research to another level.”

Following the money here will be instructive. Saskatchewan earmarked the funds to study the unorthodox “MS treatment” because it’s home to the country’s highest incidence of MS. CCSVI represented an iconoclastic alternative to the MS status quo that appeared to help a portion of the MS population. Now, the government has a choice: give the money to the MS infrastructure that has rejected CCSVI from the get-go, or fund research that identifies CCSVI as a vascular condition frequently linked to those also diagnosed with MS. What the province does next will determine whether it wants to continue its historical role as a medical trailblazer.


 
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Time to liberate ‘liberation’ therapy from MS

  1. EVERYONE WORLDWIDE deserves CCSVI in their own country for MS its disabled discrimmination to refuse and ignore also

  2. Every negative media outburst is a step in the wrong direction for people with CCSVI . Multiple Sclerosis is the tip of the iceberg. Earnest,progressive doctors remain in the shadow of their findings in order to satisfy the opposition as well as the doctors who simply crave the limelight. In the meantime quality of life remains an intangible goal for those who do not have any.

  3. Just one correction – Dr Siskin’s group began treating CCSVI in mid 2010. I was treated by him on Sep. 17th 2010 and was approximately his 100th patient. This man has a tremendous amount of knowledge in this field and I am honoured to have been one of his patients. I am still reaping the benefits over 3 years later. Thank you Anne Kingston for this. I wrote a letter back in Feb.2012 published in the Ottawa Citizen in which I wrote “I believe that the problem here is that chronic cerebral spinal insufficiency is not being considered as a separate disease syndrome. If it can be linked to MS, it can fall under neurology”…

  4. Thank you Anne Kingston. Once again, you have written an honest, open analysis of CCSVI in Canada and around the world. I fully support de-coupling CCSVI and MS; that pairing has led to a host of difficulties for Canadians with CCSVI who have also been told they have a neurodegenerative disease – MS. It has also led to a faction in the medical community obstructing research into CCSVI. After all, MS is a multi-billion dollar a year industry and the only ones who don’t benefit from that industry are the Canadians who have been labelled “MS”. It is worthwhile noting that “multiple sclerosis” means many lesions – a description that could be applied to other neurodegenerative conditions. Conditions caused by infections include the same symptoms as MS but MS specialists refuse to consider anything – infections, vascular issues – but the unproven autoimmune theory for MS. Patients are medical hostages and are forced to become medical refugees. Very, very sad and very frustrating for Canadians who are simply looking for a better quality of life and access to a treatment that would be available to them if they did not have the MS label.

  5. Bravo Anne!

  6. Thanks Ann for this insightful article. We know that Canada is way behind on the studies. While other countries advance, we are still trying to figure out the imaging protocols to diagnose CCSVI.

    Pity to those who suffer from CCSVI and cannot be treated in their countries of origin with proper follow-up care.

    Yes, MS patients are caught in the middle of this battle. All we want is improved quality of life! Please MS Societies, move over and admit to the fact that you have capitalized on my sickness for decades now.

    There are a few lessons to learn from this. Time to turn the page and move on. Time for neurologists to “let go” of people with MS, and stop experimenting on us with drugs that work no better than a placebo effect and that are bankrupting not only our country, but the health of tens of thousands of Canadians.

    • A better quality of life is all i wanted from my procedure & i certainly received that and more :-)

  7. Thank you for summarizing this issue of medical discrimination that should have Canadian medical professionals hanging their heads in shame!

    When I had pain in my chest/ribs similar to what I had previously been told was the “MS hug”, my g/p still wanted to check further–because there are many “conditions” that can cause symptoms like that, not just MS. I was sent for an ultrasound and it was discovered I had gallstones–a treatable condition. However, after the “story” of CCSVI broke, I was “not allowed” to have an ultrasound in Canada to determine if the blood/csf flow from my brain was impaired by faulty veins, even though many of my symptoms are the same as those caused by vascular problems.

    Thank goodness I left this discriminatory country to have my veins checked, because it was found by venogram that my azygos vein was 50% blocked and both jugulars were 90% blocked. After venous angioplasty, my balance was restored, drop-foot was improved, heat-intolerance eliminated, and no more “MS-headaches”! I had suffered from neuropathic itching that my neurologist told me wasn’t related to my MS–I guess he was right–it was a vascular issue that I wasn’t “allowed” to explore in Canada because I wasn’t “allowed” to see a vascular specialist because they weren’t “allowed” to consider vascular issues for anybody with a diagnosis of MS because of the CCSVI issue. Fortunately, my venous angioplasty fixed my itching problem too–no thanks to the medical “profession” in Canada!

  8. Well done, Anne! You are a great advocate!

  9. “give the money to the MS infrastructure that has rejected CCSVI from the get-go” –
    NO! they will just line their own pockets given their fundraising has suffered – DEFINITELY give to vascular to carry on with CCSVI – because it is NOT just MS patients – many other diseases are POSITIVE for CCSVI

  10. Thank you Ann for this article. I am very thankful for my healing of MS symptoms after venoplasty treatment for CCSVI. Diagnosed in Canada by Dr. Sandy McDonald at Barrie Vascular, treated in Clearwater Florida by Dr. Bulent Arslan (now at Rush University Hospital in Chicago USA.) 2-1/2 years and I am doing extremely well. MRI and post treatment Ultrasound proof as well. Keep searching for the truth it will set you free! Blessings Wendy Swanson

  11. Dr Michael Arata treated my wife (who does not have MS but who has many “MS symptoms” ) with balloon angioplasty in southern California a month ago. Overnight, her brain fog was gone, her balance became perfect, she emptied her bladder fully for the first time in 4 years. And her fatigue was gone too. Also, a tickle reflex that she had lost in her foot returned. Colours were brighter for her and sounds clearer and her right arm no longer feels to me like something from the living dead. Dr Arata also said that her veins were fine. So lets forget MS and CCSVI altogether! Dr Arata says that he uses balloon angioplasty to treat Autonomic System Dis-function. He bases the decision to balloon on the treatable symptom set and on simple heart tests. (NOT on squashed veins). I am livid about the Canadian Medical Associations. 2 People with MS were treated with balloon angioplasty in the Royal Juballee hospital in 2010. Both people got great results! But the doctors association brought the radiologist up before their board to be fired. My wife spent 5 or 6 weeks in that hospital and almost died. Nobody ever told us about those 2 successes in 2010. She has had 4 and a half years of pain and fatigue and depression and falls thanks to the BC Medical Association. Results count. Start counting them. Thousands of people feel better following this operation. It does not matter if the doctors do not know exactly why it works. It works, start using it. Figure out exactly why later.

    • Brian White, we MUST know why venoplasty helps only partially or not in part of the people with MS and comparable conditions. Why not using the tools available for veri-or falsifying the explanation I put forward in STV 2012; 24: 394-404? If you want to know more about this, please tell me so.

      • Hi, Mr Schelling, Dr Arata noted in a 2011 talk that he found many jugular valves that were stuck half shut. His solution, (which he did not like but which was his only choice) was to balloon the valve and force it fully open. This increases blood flow but removes any protection that the valve gives to the brain. So maybe the the valve stuck at half open fits nicely in with your theory and allows the palpitations of the heart to transmit “echos” up through the enlarged jugulars of ms patients and into the brain where they cause the mechanical damage you and others describe.

  12. Multiple Sclerosis Society of Canada
    Hi Florence,
    We won’t be sending anyone
    to Sherbrooke for the conference; however, we will have representation at the
    European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS)
    conference in October. CCSVI research will be presented at ECTRIMS and we’ll be
    sure to provide an update on what was discussed






    Above is a post that was sent to me by the MS Society of Canada. There is a branch of the MS society in Sherbrooke Québec, about a two-minute drive from the Delta Hotel where the National CCSVI Society will be having their conference, “Voices of Progress”, September 28 & 29, 2013. This will be a first class conference with top-notch published researchers & medical doctors speaking on a variety of topics. Patients with MS and other neurological conditions and their supporters will be attending day one, the patient day. Yet the MS society of Canada has decided to not attend this event. Instead they are sending “representation” overseas to Denmark to hear research mostly done by neurologists. This demonstrates that the MS Society does not support patients and is not keeping up with NEW research. Hopefully money will NOT go to the Multiple Sclerosis Society of Canada.

    • This is ridiculous – of course a representative from the MS Society of Canada should be there. The conference is on their doorstep, unlike the ECTRIMS one – oh silly me maybe that’s why!

    • Just goes to show how much the MSSC is unwilling and ignorant to advocate for those who have the awful lable of MS. And yet, Joe Public throws millions upon millions at their begging feet. Who benefits from MS? Not those who suffer but those who run this business. PROVE ME WRONG. PLEASE. I want to be wrong. But, to this day …. still no response to our question of their accountability and credibility.

  13. Brilliant analysis of the state of CCSVI research right now. We’ve come to count on Ms Kingston for excellent reporting. Good of her to note in her last line the history in Saskkachewan. They should step up, they DO have a great history in this regard. We just can’t keep ignoring these good clinical results, while we work to find out why it doesn’t help everyone or every time. It sure helped me I have not needed this scooter (my 2010 photo at left) in the three years since I was treated for CCSVI

  14. I was Dr. Siskin’s 88th patient and was treated July 11, 2010. I am so grateful to him for giving me my life back. At the time of my treatment I had been progressing in disability at a slow rate according to my neurologist, but for me if felt that the progression was going at lightening speed and I knew within a year I would be in a wheelchair. My balance was horrible, my speech was halted and I had difficulty with word searching. All of that is gone and was within hours of the procedure. I cannot ever thank Dr. Siskin enough.

  15. Thank you so much Ann

  16. CREATING OUR OWN REALITY USING CCSVI : Finding the path of least resistance would be the path to follow. Putting together a national fund that would help treat patients and collect data would be more productive than pushing against a wall ( pushing against the actual medical system). Changing the way we go about CCSVI in a more positive way would be the path to follow. THE MEDIAS COULD HELP !!! ANNE KINGSTON COULD HELP TOO USING HER WRITING INFLUENCES TO GET THE NEW MOMENTUM GOING IN A MORE POSITIVE WAY. We cannot change the belief system of neurologists. This is a waste of time. The system is serving them way too well. What would be serving the MS population then? A national funding organization composed of wealthy members who would have an interest in the cause so that they could then get the momentum going in the right direction. This is an example of what is needed. We do not need neurologists to get a new momentum going. We need exposure and money. Maybe such a funding organization already exists. How to get people get together on this one and align with this idea ??? A celebrity would be needed. Someone with some power. Everything is possible. We just haven’t thought of it yet. Focusing on the negative will bring negative results. This is LAW !!! If the MS society can raise millions, we can too !!! We need to find the right people to start with. In our world , the egos rule. We have to by-pass this concept and re-align the cause of CCSVI with what will serve the MS population best regardless of the neurologists resistance. When the positive new momentum will be cruising at a steady speed, then they will have no choice but to listen to their patients, which they have completely forgotten to do in their conventional practice. If all the people interested in MS would stop giving to the MS society for a while and would focus on applying the Terry L.Walsh protocol ( minding your mitochondria) and also would start applying the Gerson protocol for juicing to detox the liver so that their immune system would get a boost so that the healing process could start working again in a more efficient way and would commit to give a certain amount of money to a funding organization that would get the momentum going, then, we would be going forward in a direction that would not be pushing against the resistance. We cannot solve a problem with the same thinking process which created the problem in the first place. Think outside the box. Patients can change the momentum. Resisting to status quo, by pushing against it, is a waste of time. When people will be ready to change , things will turn around. People may not be ready to hear this but this is my thought on this one.

  17. the vascular problem in the veins of msers goes back more then 160 years now .ccsvi has rocked my world in a fantastic way , many others sometimes only for and short time but sometimes for years . try taking avonex one of the drugs of choice where you work all week come home and take a needle that screws every weekend of your life like in my case for 7 years .thats only one of four that i tried see how that rocks your world and it will not be in a positive way . what everyone seems to not realize is it’s the brain that is being denied FULL FLOW of the liquid that give us life . the brain is the control centre and the one organ that can’t be denied. any doctor with half a clue would tell you if blood flow is restricted /slowed through brain long enough shit well happened . if this happened to all doctors or leaders of our countries we would not be talking about it today . i guess it’s all about percentages , 2.5 million msers is a money maker not a problem to leaders .survival of the richest and most powerful . i feel so small every time i think about this .

    • I’m happy for you, Stephen, and I can relate-it’s been over 2-1/2 years for me now and I’m doing great! I was secondary/progressive before any of the so-called disease modifying drugs came on the market so I’ve never even been allowed to try those poisons–they’re only for relapsing/remitting cases because when somebody on them has a remission, it appears the drug might be helping–but since I was NEVER supposed to improve, they were content to just let me deteriorate until I die. But I proved them wrong! My improvements since venous angioplasty have been remarkable–even my neurologist had to admit it when I didn’t fall over during the “balance test” for the first time in 18 years!

  18. Feeling powerless and disempowered will keep the actual negative momentum exactly where it is at. Nothing will change. Desperate people cannot change the momentum until they get to a more hopeful place through their belief system.

    • We need to support each other. I have many days where I feel powerless then I rebound. Thanks for expressing your thoughts.

  19. This would be so much more credible except that “cerebro-spinal venous insufficiency” isn’t’ recognized as a medical condition and didn’t exist as a term until “discovered” by Dr. Zamboni.

    You’re grasping at straws, Anne

    • only a matter of time

    • Maybe you should google “chronic venous insufficiency” to show you how long venous insufficiency has been a problem–my mother had varicose veins diagnosed more than 40 years ago! It was only when the “cerebrospinal” veins were specified, with an indication that MS might be related, that venous insufficiency became “controversial”, because the status quo of treatment of a very PROFITABLE condition was being threatened!

      • A condition with no known effect. Cool. Let’s get right on that research.

        • For the scientifically illiterate, the definition of research:
          “diligent and systematic inquiry or investigation into a subject in order to discover or revise facts, theories, applications, etc.”

          • Except you’ve already decided the facts. You’re just looking for research that agrees with what you believe. That ain’t science.

    • It is a recognised condition as of 2010 do a little more research MostlyCivil, or are you just one of those naysayers? What the problem is is that they won’t recognise it in people with MS. Thank Anne again for you diligent research and great articles.

      • Actually, science is all about “naysaying’. Science wants you to prove it wrong. So, prove it.

  20. Ms Kingston reports that Dr Siskin treated 23 patients in his trial before he gave up. This is four more patients than in the Buffalo trial, which I guess was similar. Since Siskin’s trial has now been abandoned, a good reporter would have asked him why he has not released the results in this small group. That would give a total of 19+23= 42 MS patients in trials with about half given a sham procedure as a control.

    • Unfortunately the Buffalo trial did not restore normal blood flow in the patients treated. Siskin has far more experience in this treatment so his findings should be considered far superior.

  21. I am disgusted by hearing ignorant naysayers, like MostlyCivil, spout negativity when they obviously know nothing about the subject. I can positively say that I am WALKING PROOF that the procedure of venous angioplasty CAN improve symptoms attributed to MS! (you can see my before/after videos on youtube). I don’t know if these symptoms were mistakenly attributed to MS but I KNOW, and so does my neurologist who has performed neurological testing on me for 23 years, that I could do the “balance test” WITHOUT FALLING FOR THE FIRST TIME IN OVER 18 YEARS, after this treatment, even though I was NEVER supposed to improve! THIS NEEDS TO BE INVESTIGATED!

  22. Considering that the MS infrastructure seems to be entrenched in the status quo it’s absolutely the last place the money should go.
    What other forms of surgery have been based on a placebo-controlled trial and how many procedures have ever been declared “definitive”?
    The insistence by some that MS is a neurological condition keeps it in the same speculative realm as everything else that’s treated as if it’s a drug deficiency and only a drug can treat it.
    People should wake up and realize that the major focus of medicine has devolved into a state of naming a diagnosis and then being capable of doing damn little or nothing to cure it while raking in huge profits in diagnostic testing and expensive drug treatments.

  23. I’m only one of many people who underwent the CCSVI treatment. It did not produce any positive results for me. :(

  24. Dr Siskin is deliberately sabotaging this study in favor of CCSVI international froud business that brings millions in profits to him and to unscrupulous medical charlatans worldwide.

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