MS Society of Canada “a house divided,” CEO says

Anger and insurrection disrupt annual meeting

by Anne Kingston

Italian vascular surgeon Paulo Zamboni: the man behind the new treatment for CCSVI (CP/NATHAN DENETTE)

Tensions boiled over at the Multiple Sclerosis Society of Canada’s annual meeting on Saturday as MS patients and their advocates turned up in unprecedented numbers to demand the organization help them gain access to treatment for chronic cerebrospinal venous insufficiency, or CCSVI.

In past years the charity has had difficulty rounding up the 15 members required to achieve quorum. This year, more than 60 people showed up at a mid-town Toronto hotel, many with proxies to support Linda Molyneux and Brock Winterton, two rogue board nominees who support CCSVI treatment being made immediately available in Canada. After votes were tallied, neither came close to unseating the five board nominees on a slate proposed by the society’s governance committee.

The attempted putsch reflected frustration among its 31,000 members over the society’s resistance to supporting treatment for CCSVI, a condition identified by Italian vascular surgeon Paulo Zamboni that made headlines after a CTV broadcast last November. Zamboni had discovered blockages in the neck and thorax veins of MS patients. After they received balloon angioplasties to restore blood flow, a routine procedure in cardiac medicine, many saw their symptoms improve; some saw the disease’s progression halt.

The MS Society has taken the position that CCSVI treatment is “experimental,” that Zamboni’s research is yet to be scientifically tested, and that the results of clinical trials, which could take years, are necessary before CCSVI treatment be given the green light.

“It’s an exciting time in MS research,” Linda Lumsden, chair of the national board of directors for the MS Society, told the crowd, noting “CCSVI has consumed the interest of the membership.” On Friday the Canadian and U.S. MS societies announced $2.4 million for four research studies in the U.S. and three in Canada; all will research CCSVI but not test possible treatment. The society has also requested $10 million for CCSVI research from the federal government, Lumsden said. She was particularly buoyed by the charity’s recent partnering with A&W expected to net some $400,000: “Go out and buy a hamburger on August 26,” she instructed the crowd.

But she couldn’t ignore the anger percolating in the room: “I know there is a level of frustration but we are working aggressively to get scientific evidence,” she said. “Then we can advocate.”

The stance infuriated many. “People with MS don’t have the luxury of time,” said Brock Winterton, a Toronto financial analyst who spoke of the “growing sense of despair” watching the disease weaken his wife, Janet Heisey. “There was nothing until we found out about Dr. Zamboni’s work,” he said. “And we had something and it was called hope.” After the meeting, the couple flew to Bulgaria where Heisey was booked for CCSVI treatment. People with MS “don’t understand why something so low-risk should be denied to them,” Winterton said, criticizing the “modest” $350,000 the society has allocated annually for each CCSVI study, noting it’s a mere 2 per cent of its total research funding.

Linda Molyneux, whose 22-year-old son received CCSVI treatment in Bulgaria earlier this week, blasted the society for being unresponsive to its constituency: “It has become clear MS societies have lost touch with their membership,” she said. “Are they here to serve neurologists and drug companies? Or are they here to serve people with MS?” she asked, noting: “Patients feel the single greatest impediment that stands between them and this treatment is the MS Society.” She spoke of the toll the disease took on her son, such as the crushing fatigue that caused him to drop out of university. Days after his CCSVI procedure, she added, he was out sight-seeing with his father.

Members repeatedly expressed disillusionment with a society they’d supported for decades. Some questioned the make-up of the medical panel who approved the CCSVI research grants, noting it was filed with neurologists and lacking vascular specialists familiar with Zamboni’s protocols.

Some MS patients took to the floor to express fury that they were being discriminated against. “I want my veins opened. Why can’t I have my veins opened?” asked 51-year-old Michele Deverill of Toronto. “Why won’t MS Society agitate in Ottawa on our behalf?” Someone else made the analogy with the Heart and Stroke Society’s advocacy for the new blood-clot vacuum used on stroke victims. It was tested on 27 people before going into widespread use and subjected to no clinical trails.

Yves Savoie, the society’s president and CEO, was calm and measured in his responses: “I understand the sense of urgency,” he said. “Yet the evidence base needs to be robust.” Factions exist, he admitted. “This house is probably divided and we may not reconcile it today.”

By meeting’s end, however, it was clear “this house” has been duplexed. Eleanor Barker was among the most outspoken. Her 51-year-old brother Grant who has had MS for decades is now a quadriplegic, she told the room; over the past six months, MS-related dementia has set in, stealing his once-vibrant intellect. Scans reveal no blood flow in one vein. Her family is so desperate they’ve researched the cost of air ambulances to transport him to Bulgaria: $125,000 each way.

The MS Society’s number one advocacy goal should be for every MS patient in the country to have CCSVI testing, Barker said. “People have a right to have blood flowing through their bodies, even if they have MS.” She challenged the room: “Is there anybody who doesn’t believe that people shouldn’t have access [to CCSVI]?”

Not all members did. One man whose wife has MS which has been progressing slowly expressed concern that the focus on CCSVI could leave MS patients further from a cure. One woman said she was unwilling to be “a guinea pig” and had “faith in the system.”

They were in the minority. Brian Light, a Toronto publisher who addressed the room from his wheelchair, spoke of traveling offshore for CCSVI treatment in January. Since then, the disease has not shown any signs of progression, he said. He questioned why the society has shown no interest in tracking Canadian MS patients among the more than 1,000 who have received CCSVI treatment elsewhere in the world.

“MS is a disease of testimony,” Light said. “Everyone has a completely different story.” He too begged for the society’s support on behalf of fellow MS patients: “We’re getting worse. We’re going down and we’re going down bad,” he said. “Give them this chance.”

MS Society of Canada “a house divided,” CEO says

  1. Why was the Multiple Sclerosis Society in Canada not the first source of information for their members with regards to a possible new treatment for MS in stead of a news reporter from Toronto?

    The frustration's of the MSS members is understandable, the response from the MSS is not.

    • Proposal to set up a Canadian Centre for Neurological Diseases(CNND) on First Nations Territory, with the help of Corporate Canada and Native Funds, is gaining momentum. CNND plans to offer both, the state-of-the-art diagnostic comprehensive reports and treatment for MS patients using 3.0T MRI exams, Doppler U/S and blood tests as well as day time veins angioplasty surgical procedures. The total cost 10K !
      For a copy of the proposal, please send your request to jessica@mri-exam.com and visit http://www.mri-exam.com or contact Dr. S. Haider, Ph.D. MRI Physicist, President/ CEO, Quinte MRI, Inc. Belleville, ON Canada at syed@quintemri.com and visit http://www.quintemri.com

    • same old same old dawn. anything new to say?

  2. Its a pity money speaks louder than words. I'm sure if there was millions of dollars to be made from the liberation process, it would be on tv commercials by now.

  3. So blocked veins stop the drainage of blood from the brain, and MS patients have too much blood in the brain? This deposits iron? And opening these veins to drain the brain helps people get better circulation in their legs? Come on…

    And how can you compare that with opening blocked arteries to the heart? Check the difference between arteries and veins people.

    These vascular surgeons are hope-mongers, and they had better make their money quickly before the research shows them to be scam artists.

  4. Jim Anderson – perhaps you should do a little more research before you choose to assume you know what you are talking about…?

  5. "…are we to believe that our most vital and, in many ways, most delicate organ, the brain, stands alone in being impervious to impaired venous drainage? Hard to imagine."

    Dr. Lorne Brandes

  6. Jim Anderson MD-Neurologist

    • Now that explains a LOT!

  7. WE ALL SHOULD STOP DONATING TO THIS ORGANIZATION. WHAT ARE THEY DOING FOR US NOTHING, NOTHING AT ALL!!

    • I'm sorry you're so angry, NSLady. The job of every disease charity is to spread the research dollars out in many directionbs, as funding only one line of research is betting without having the information you need to bet. A drug like Tamoxifin (breast cancer) was not expected to be a huge discovery. However, the trial results were so dramatic, they stopped the clinical trial halfway through to make sure the drug was immediately approved for use.

      But that only happened because the research funding wasn't all being directed at one choice. I want a cure as much as anyone (for my wife), but even she wants to wait to see what the research says, and the research has started.

      Patience is hard, but cures never come in time for everyone, maybe not even my sweetie.

  8. By now no body is foul, we know who has a concern for our safety & not.
    Let the patients make a decission for thier own body, they are loosing every day anyways.

  9. Germany and other European countries want to be part of the CCSVI research and treatment. They want to be part of the proactive and advanced technology team. Our Canadian system is comprised of a group of followers and want other countries to make the discoveries for them. Tisk on Canada!

  10. Comments from an Australian MS support blog
    The recent news presented in Researcher’s labour of love leads to MS breakthrough, appears to give hope. I’m wondering what’s the back-story? What sort of hope is it? Real or false?

    Colin Rose, Cardiologist and Associate Professor of Medicine, at McGill University in Montreal, Canada advises great caution. As he explains:

    “Any MS patient with a large enough increase in venous pressure to cause red cells to leak out of small veins would have a head that looked like a leg with severe varicose veins; his eyes and tongue would protrude and his face would be very swollen and blue.

    You can read Dr Rose’s assessment for yourself and make up your own mind.

    In the absence of blinded randomised controlled multiple trials, as Colin points out the scientist is subject to “subconsciously motivated action”. If MS could be halted by such a simple procedure, it would be lovely wouldn’t it?
    In that case, I’m lining up for it.

    However, I suspect this is not the breakthrough we’re hoping for.

    At this point in time, this case is more likely to be an educated man who desperately wants to help his wife (who has MS herself), grabbing-at-straws and two internet-savvy journalists who made a deadline

    ———————————————

    • Shouldnt the MS Society at least be advocating or helping get clinical trials of the procedure here?

    • Jim, can you explain this to me and others :"..are we to believe that our most vital and, in many ways, most delicate organ, the brain, stands alone in being impervious to impaired venous drainage?"

      How about venous stasis ulcers? Do you also not accept those as a result of poor venous return?
      Well, I see you bring up IICP too: a swollen optic nerve is a reliable sign that ICP is elevated.
      Optic-neuritis, anyone?
      I mean, show me the research on this. Oh yes, that right, nobody wants to actually research this, they just want to dismiss so the money keeps rolling in…..

      • Venous stasis ulcers are not remotely similar to MS lesions and even the CCSVI hypothesis does not suggest that they have a similar pathophysiology. ICP is not indicated by a "swollen optic nerve" but by papilledema, which has an entirely different appearance from optic disc edema caused by optic neuritis. There is absolutely no indication that CCSVI – again, if it exists as an actual finding – correlates with any signs or symptoms of raised ICP or any other kind of vascular obstruction.

    • Oh my ,,,,,You Jim and Colin Rose are both nay sayers who just want to stir up the pot and piss people off. We are aware of this Colin Rose and obviously you too. I cannot believe why you are wasting our time having to read your garbage. We scoff at you both. I know you two are together on this and boy do you both look like idiots.

  11. I am considering learning the procedure myself. I will liberate your veins, and your wallet.

    • You seem pretty down on this procedure Jim. Any particular reason or agenda why?

    • Awesome Jim Anderson! You certainly have some issues with CCSVI…care to elaborate? Oh and Jim…Colin Rose has never once presented a scientifically based argument against CCSVI. He is will known to the MS community (Dr's and patients alike) and has pretty much no credibility. Venous drainage from the brain has not been investigated fully and what Colin Rose presents is just his opinion. Period. He has not done the research, nor has he read the research available to date as far as I can tell. Just so ya know…
      Hope

      • Actually the argument quoted above is entirely "scientifically based" as it pertains to the expected findings of a real obstruction to venous drainage of the head and neck.

  12. For all the spurious comparisons to angioplasty and stenting of coronary arteries, it must be pointed out that such interventions do NOT cure coronary artery disease, but merely treat an acute or chronic occlusion of one or more vessels. The existing atherosclerosis and vascular disease remains, and such patients are managed medically by anti-coagulants and anti-hypertensives. Even so, stents can fail (or, worse, migrate), vessels can collapse again, and the disease process can advance requiring more invasive interventions (i.e. bypass). Veins are not typical targets for angioplasty since they are quite different from arteries – more easily distended and collapsed, with thinner, less muscular walls – and not subject to the same disease processes. Notably, stasis of venous blood flow leads to blood clots.

    My point is simply that the CCSVI hypothesis is implausible. If there exists clinically significant venous stenoses, we would expect symptoms and signs corresponding to such an obstruction, e.g. facial swelling, papilledema, elevated intracranial pressure. Nothing like MS. If little was known about the MS disease process, there might be more reason to consider this hypothesis, but that is not the case. What's known about the cause(s) does not really square with CCSVI, which if it truly exists may only be a feature of MS, rather than a primary cause. It needs to be thoroughly investigated, however, as the controversy described by this article makes clear.

    • how do you explain the results people are expierancing? Its easy to poke holes in your theory..if you are not completley blocking the vein but slowing it down (a trickle say) ,the reflux can be devastating to the brain (scerlosis).The damage just grows (slowly) and the effects spread.We are talking about the iron in the blood not flowing to the the hear RECYCLED)t and being stopped along the way and sent back to the brain (reflux) .What can you expect ? Damage. Good flow …no damage

  13. Part 1
    To Jim Anderson, alleged Neurologist:

    Your comment reminds me not to call an electrician to diagnose/comment on/research a plumbing problem.

    I would imagine that if Neuro's weren't at all threatened by this new vascular research, that the response from the Neuro community would be far more rational, measured and fact-based. Instead the MS community is witnessing the Neuro community respond with vitriol and mere opinion (again electricians opining on plumbing issues). So far, I've seen no response re: CCSVI from the Neuro community that is rational, logical and based on fact and science. Nothing. (Part 2 to follow)

    • I should add to my other comments that neurologists spend an inordinate amount of time considering cerebrovascular disease, ie. strokes, TIAs, hemorrhages. The notion that they are unfamiliar with the effects of vascular obstructions is ill-informed and simply wrong.

  14. To Jim Anderson Part 2

    The MS community trusted Neuro's with our lives. Based on your collective responses to CCSVI (as even being a potential part of the MS puzzle), I do believe that a significant number of us now feel that it is not the MS community you care to protect, but your own self interest (be that professional ego, monetary gain etc etc ) in the "care" and "treatment" of this horrific disease.

    Shame on you Jim Anderson, whoever you are.
    —————————————————————————–
    JA wrote:
    And how can you compare that with opening blocked arteries to the heart? Check the difference between arteries and veins people.

    These vascular surgeons are hope-mongers, and they had better make their money quickly before the research shows them to be scam artists.

  15. Someone thought that I was a neurologist – far from it. Only a reader, but I don't believe everything I read. I'm an old hippy that swims against the current. However, it seems to me that hope for profit could make you believe a hypothesis, and hope for cure could do the same. Like so many cancer cures that have come and gone.

    • You and Colin Rose are pure jerks and you obviously have no clue on what you are saying. Why don't you do something good for people instead of looking like fools.

  16. It makes people feel better, think better, move better, things that their medications don't.
    VIVRE CANADA LIBRE.

    • How true is this!!!!!!!!!! Thanks Colleen :)

  17. The MS Society and the MS CLinics (Neuro's) had 30 years to make a difference, how has that worked for everyone so far, anybody been cured or stayed the same for 30 years using all the drugs. It's now time to support the CCSVI Society (oh yes it's real) and the Vascular and Radiologist. as they dignose and treat CCSVI. They certainly can't have worse results that what we have seen in the past. The MS Society can continue to partner with Fast Forward program who is partners with Serono Canada (Biotech, Pharmaceutical Company who is a sub company of Merck Global), I hear Serono has a new drug coming out for MS patients. I'm sure that one will be the miricle cure. Too bad their timing sucks as it's CCSVI's turn now. Seems odd to be that the National MS Society is associated with Serono via their Fast Forward program, it all makes sence now why they don't support CCSVI.

    • I agree wholeheartedly with you Carol! If it quacks like a duck…

    • Great info Carol. The MS Society also has the neurologists in their pockets…and so their 'message of caution' is one and the same. A lot of weight was given to the neurologists and to the MS Society at last night's Take Note Debate in the House of Commons. The Health Minister repeatedly mentioned the Society's announcement for research, seemingly the Canadian government's answer to their involvement re: CCSVI. They then pointed their finger in the direction of the provincial and territorial health ministries and washed their hands of it.

  18. What is worse is that here in Quebec the Board of Doctors even made the testing for CCSVI in private clinics banned. This is as if we were in A communist country. We can get scanned for any other coronary issues but not M.S? This is our money and our time.

    • Hi Seb,
      It's not just in Quebec. We got 'cut off' in Ontario in a similar way.

      • Has happened in States also!!

  19. The MS Society and their entourage have done very little for my wife who was diagnosed with MS 35 years ago and hasn't been able to teach for the last 20 years. Give her a chance for hope because if you were in that situation you would want this last chance. If you don't maybe the higher powers will punish the greed for $.

    • Sorry, but my wife is "retired" from the medical field because of MS. She is also interested in the therapy, but wants to see the research play out before she makes a decision. Fast decisions make for bad science.

      In the 1990's, a similar situation happened with a group calling for massive funding of pancreatic cell implants to cure diabetes. They boycotted the CDA, argued to have them spend all their research money on the new discovery. Had they done so, a very promising area of research regarding transplantation would not have been funded. The pancreatic cell research that went ahead was a complete and total failure. The "miracle" techique was fatally flawed. Google "The Edmonton Protocol" and do some reading.

  20. In every province, the leading funder of research is…the government.
    To your point, you are correct. Raise noise politically, rather than trashing the charity which has been raising millions for research for years. As well, the tax records for every charity are online at the CCRA website, so if the posters here wish to make accusations about overpaid staff with big cars, they may wiss to do a little homework.

    Meanwhile, Macleans has just increased the amount of donor apathy for every worthwhile charity in Canada. Well done.

  21. I was at the Leduc to Camrose Rona MS Bike Tour as well. I would say your comments are rational, logical and well spoken! Thank you for your comments!

  22. Only those without MS have the time and lack of urgency to limit action to long term surveillance of inflicted individuals and prohibit exploratory intervention. The current dictates by the healthy elite of their "wait and observe" poicy, sentances those inflicted to futher physiological strangulation. People across this country need to obtain copies of the by-laws of the provincial and federal MS Societies. Lawyers prepared to do some pro-bono work can assit to launch a successful election of new directors. That new board will have the power to order management in a new direction. One side consideration of such a new board may be the apparent conflicts of interest between the societies and a) the Canadian neurological society and it's present policy and b) accepting funding from or association with pharmaceutical companies. Nothing will change until the present "structure" is forceably altered.The present pew is just too comfortable and profitable. As to Canadian government priorities and inaction on this issue, note the current availability of $1.4 billion funding for a 48 hour G 20 conference ! But that of course is a question of priorities, isn't it.

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  24. Why is there so much resistance to a procdeure that could at the very least provide symptomatic relief from the effects of MS? Is the medical community so righteous that they will deny thousands of people even a day of relief to prove a point? MS is a disease of unpredictability that does not replicate itself identically on any two people. How then do we know that the pharaceutical interventions are actually working – could it not simply be a period of remission?

    Without understanding the cause there is no linear relationship of statistical significance that any pharmaceutical intervention can own for itself as 'prevention'. I applaud Dr. Zamboni for thinking outside of the box – how else do we achieve innovation.

    If you don't give us the CCSVI procedure at least avail the MRI testing. With appropriate patient safety protocols in place contrast has no greater risk than freezing at the dentist. Those who know so much about what doesn't work for MS should then inform the 70+k people around the world as to what actually does work.

    If you can be a part of the solution then at least get out of the way of those who are!

  25. I just returned from Poland 2 weeks ago and yesterday I spoke to my local MS Group with the blessing of Division and Chapter members, it is only those in higher offices that are the problem as those who deal with clients everyday support CCSVI research as there where over 30 people to hear me speak including people that work for the Society,

  26. The entire stance of the Canadian medical community AND MS society is BULLCRAP!! Forget 'enough' clinical evidence/trials… waffling on whether or not the operation is 'feasible'…. the fact of the matter here is there is what seems to be absolute proof that people suffering from MS have BLOCKED VEINS when compared to the general populace!! The answer here is soooo freaking simple! TEST people with MS for vein blockage… it's non-invasive, would cost next to nothing and would give a definitive launch-off point to start this ball rolling for the procedure.
    If a large percentage of MS sufferers HAVE vein blockage/thickening, it really doesn't take a brain surgeon to figure that there's a correlation between the 2! MS society pulls in ALOT of money from the gov't and populace at large. I myself have donated money and used clothes on a regular basis and am particularly disgusted that a mere %2 of there funds have been earmarked toward a study of this procedure. FACE FACTS, if this really is a 'cure' a truckload of people are looking at losing their gravy-train forever…. make sure NOBODY who stands to 'profit' off having this disease continue be able to have any vote whatsoever as to what treatments can or cannot be done for these poor sufferers!!

  27. It should be mentioned that our research is under much scrutiny & attack from elements that are trying to control the industry & the dialogue.We would ask you to have the independence of thought to see through their campaign of deceit. http://www.ccsviclinic.ca/?p=783Regular research updates will be published on the Clinic website. Questions about participation may be directed toward the Clinic administration at 888-419-6855.

  28. Chronic cerebrospinal venous insufficiency (CCSVI), or the pathological restriction of venous vessel discharge from the CNS has been proposed by Zamboni, et al, as having a correlative relationship to Multiple Sclerosis. From a clinical perspective, it has been demonstrated that the narrowed jugular veins in an MS patient, once widened, do affect the presenting symptoms of MS and the overall health of the patient. It has also been noted that these same veins once treated, restenose after a time in the majority of cases. Why the veins restenose is speculative. One insight, developed through practical observation, suggests that there are gaps in the therapy protocol as it is currently practiced. In general, CCSVI therapy has focused on directly treating the venous system and the stenosed veins. Several other factors that would naturally affect vein recovery have received much less consideration. As to treatment for CCSVI, it should be noted that no meaningful aftercare protocol based on evidence has been considered by the main proponents of the ‘liberation’ therapy (neck venoplasty). In fact, in all of the clinics or hospitals examined for this study, patients weren’t required to stay in the clinical setting any longer than a few hours post-procedure in most cases. Even though it has been observed to be therapeutically useful by some of the main early practitioners of the ‘liberation’ therapy, follow-up, supportive care for recovering patients post-operatively has not seriously been considered to be part of the treatment protocol. To date, follow-up care has primarily centered on when vein re-imaging should be done post-venoplasty. The fact is, by that time, most patients have restenosed (or partially restenosed) and the follow-up Doppler testing is simply detecting restenosis and retrograde flow in veins that are very much deteriorated due to scarring left by the initial procedure. This article discusses a variable approach as to a combination of safe and effective interventional therapies that have been observed to result in enduring venous drainage of the CNS to offset the destructive effects of inflammation and neurodegeneration, and to regenerate disease damaged tissue.
    As stated, it has been observed that a number of presenting symptoms of MS almost completely vanish as soon as the jugulars are widened and the flows equalize in most MS patients. Where a small number of MS patients have received no immediate benefit from the ‘liberation’ procedure, flows in subject samples have been shown not to have equalized post-procedure in these patients and therefore even a very small retrograde blood flow back to the CNS can offset the therapeutic benefits. Furthermore once the obstructed veins are further examined for hemodynamic obstruction and widened at the point of occlusion in those patients to allow full drainage, the presenting symptoms of MS retreat. This noted observation along with the large number of MS patients who have CCSVI establish a clear association of vein disease with MS, although it is clearly not the disease ‘trigger’.For more information please visit http://www.ccsviclinic.ca/?p=978

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