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MS patients eager for a breakthrough surgery are facing more resistance than they expected

by Anne Kingston

Pablo Martinez Monsivais / AP

Like tens of thousands of Canadians afflicted with multiple sclerosis, Rebecca Cooney greeted Paulo Zamboni’s much-publicized research late last year with excitement. Zamboni, an Italian professor of medicine and a former vascular surgeon, brought a fresh lens to a disease long diagnosed as an incurable neurological condition: he found that all 65 MS patients in his study had stenoses, or blockages, in veins in their neck or thorax, a condition he dubbed chronic cerebro-spinal venous insufficiency, or CCSVI. After their blockages were cleared with a basic venous angioplasty, many found their symptoms improved; others saw the degenerative disease’s progress halt altogether. Zamboni’s findings were hailed as a potential breakthrough in MS research, a field focused on drug trials. Proof that the disease had a vascular component, a theory bandied for a century, was viewed as a potential game-changer offering rare hope for MS patients.

One of them was Cooney, a 42-year-old Ottawa resident diagnosed 12 years ago. Since then, crippling fatigue forced her to quit her federal government job as an international financial underwriter. But when she set out late last year to find out if the treatment could work for her, she discovered her M.B.A. and years of Byzantine deal-making were no preparation for the Kafkaesque maze before her. Like many others, Cooney learned the extent to which MS has been colonized as neurologists’ exclusive turf. When she visited her neurologist for a referral to a vascular specialist last November, he refused. Zamboni’s work intrigued him, he told her, but lacked scientific rigour and has not been duplicated. His resistance was echoed by the neurological community and the MS Society of Canada, which called for clinical trials, which can take years. “He told me: ‘I would be a laughingstock if I referred you,’ ” Cooney says.

Undeterred, she travelled to a Detroit hospital in February, paying US$3,000 for CCSVI imaging based on Zamboni’s complex protocol. Cooney returned to her neurologist with scans showing severe stenosis in two jugular veins. Still, he refused to give her a referral. Her GP was more helpful, calling vascular specialists—all of whom said that because Cooney has MS, she needed a neurologist’s referral. Finally, she emailed a cardiologist who had treated a friend. “I told him I had headaches, numbness in my left arm, pain in my chest, and severe stenoses of my jugular veins—all of which is true,” she says. She didn’t mention she had MS or that the reason she wanted to see him was so that he could track her progress after CCSVI treatment, which she received in the U.S. last week. He agreed to see her next month. Cooney regrets the omission, she says: “I want to be able to tell my doctor everything.”

Of the CCSVI procedure itself, she says: “I’m not expecting miracles.” But four days later, she reports the ringing in one ear has vanished, as have her crushing headaches. She’s also able to bend her right leg getting out of bed in the morning and has renewed strength in her hands. When asked where she went for treatment, she refuses to say for fear the clinic will be shut down.

She’s not being paranoid. CCSVI resistance mobilized quickly. Deborah Thorarinson of Calgary found herself in a twilight zone late last year when she called every private clinic in Calgary and Edmonton on behalf of her husband to see if they offered CCSVI imaging. All said no, using wording that was eerily similar. “It was like they were reading from a script,” she says. Her husband travelled to Vancouver’s False Creek Heathcare Centre, where he learned he had severe stenosis. In April, Mark Godley, False Creek’s medical director, told Maclean’s the clinic would start offering CCSVI treatment starting this month, a statement he was forced to amend after running into bureaucracy. (He now says it will be offered in a clinical trial within the next few months.)

Last month, Montreal’s Westmount Square Medical Imaging, the only other private clinic in Canada offering CCSVI scans to MS patients, was ordered to stop by the Collège des médecins du Québec, the body governing the province’s medical doctors. Jeffrey Chankowsky, a neuroradiologist and McGill University professor, was stunned, he says. He’d scanned 125 people willing to pay $450 and had a waiting list into June. In a letter, the Collège said CCSVI has yet to be proven “a medical fact,” even though 47 countries now recognize CCSVI as a medical condition. The letter also noted that neither the Quebec Neurological Society nor the association of Radiologists in Quebec had signed off on it. “It’s the first time we’ve ever been told we couldn’t scan a body part,” Chankowsky says. The clinic routinely provides imaging, such as a virtual colonography, for conditions with no medical indication. “Nobody is stopping us from doing that. But somebody’s stopping MS patients from screening their necks.” Yet someone without MS can have CCSVI screening, he notes.

The medical double standard extends to venous angioplasty, a procedure done in Canadian hospitals for 25 years. (The accepted treatment for idiopathic intracranial hypertension, for example, is a venous angioplasty and stenting.) Yet when treating MS patients’ blocked veins, venous angioplasty has been deemed “experimental” by the medical establishment and by provincial governments that refuse to cover CCSVI scans or treatment until more research is done.

Sandy McDonald, a vascular surgeon in Barrie, Ont., currently conducting a CCSVI imaging clinical trial, performed six venous angioplasties on MS patients pro bono this year and witnesed improvements. Venous abnormalities in any other part of the body are treated, he says. “Why should the neck veins of MS patients be any different?”

That question is being asked at a parliamentary subcommittee investigating CCSVI that met for the second time this week. It’s a forum that pits the MS establishment’s wait-and-see clinical-trial approach against MS patients who don’t have the luxury of time. In early May, Janet Salloum testified on behalf of her 32-year-old sister Michelle, a mother of three who has been immobilized since her MS diagnosis 18 months ago: “It’s like watching someone drown while people test flotation devices,” she said. McDonald, who receives 300 calls a day from MS patients wanting to be scanned, also appeared, estimating that scans and treatment cost some $1,500, less than the cost of a month’s prescription for many MS drugs. Cooney also testified, as a co-founder of msliberation.ca, a group pushing for CCSVI testing and treatment in Canada.

Progress is being made. Detroit-based physicist Mark Haacke has worked with clinics and hospitals across Canada setting up CCSVI imaging based on Zamboni’s protocol. He expects five sites to offer it by the end of June. Haacke believes a CCSVI-MS link exists but wants the conditions to be seen as separate. “We need to stop saying CCSVI is related to the etiology of MS, but rather point out that there is another disease called CCSVI and many MS patients have it.” Double-blind research studies are important, he says, but shouldn’t prevent doctors from treating MS patients with CCSVI on compassionate grounds: “Not to deal with a clear vascular problem is a violation of the Hippocratic oath and is unconscionable.” Last week, Haacke filed paperwork to create the International Society for Neuro-Vascular Disease, a hybrid that will focus on MS and other blood-brain barrier diseases such as ALS and Alzheimer’s. It’s a beginning. Once specialists can let go with their preoccupation with protecting turf, who knows what medical miracles await.




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  1. I am so impressed by this article. Thank you so much for finally getting this story right! As an MS'er I am very clear that there is no proven link as of yet between my CCSVI and my MS. I fully support research to continue to this end, in fact I am pushing for it! However I am also not waiting the years that it might take to establish that. If iron has been poisioning my brain since utero, I'd like to get that taken care of NOW rather than 10 more years down the road. Because as the dr.'s in this story said, if I didn't have MS they would intervien. If I had cancer would I be refused treatment based on the fact that I have a pre-existing disease called MS? It's just simply un-Canadian. Deifenbaker is rolling in his grave right now!

    • Thank you for this from the bottom of my heart. Please stay on this topic, it is so important to me and to so many others!

    • i too share this frustration, waiting is not an option for those of us with m.s. for once let our government do the right thing!

    • A Crime against Humanity was just committed for the Multiple Scleroses (M.S.) suffers of Canada

      With a simple announcement, the Canadian Government is unwilling to support research for M.S. suffers has immediately resulted in the loss of hope and a severe diminishment of the human spirit.

      With such losses, the complexity of human emotions will have countless consequences for M.S. suffers, such as; depression, added anxiety, stresses, uncertainty and the list goes on.

      The logic behind this decision is incomprehensible when this issue deals with human dignity. Is it possible that these men have secured their future security at the cost of M.S. suffers.

      Extraordinary funds can be readily available by the Government of Canada, for whatever need that arises and their discretion. But to conclude a decision “not” to expend funds to ease human suffering can only be described as a Crime against Humanity.

      If, I had the ability to establish a new direction for M.S. suffers of Canada, it would be to stop donating to the M.S. Society of Canada and create a new fund to support the CCSVI (chronic cerebrospinal venous insufficiency) research, know as the liberation treatment. As for the current standing Government, the only option for M.S. suffers and their families, is to vote them out of office.

      May these men be judged by whatever Supreme Being they believe in for their actions? Because, I just witnessed my spouse have her hope extinguished and demoralized with one simple announcement by these CRIMINALS of HUMANITY.

  2. Dear Ms. Kingston,

    Thank you so much for the great article you have written! Some other journalists can certainly learn a lot from you on how to do complete and accurate reporting on the whole CCSVI issue at hand.

    A fellow MSer posted the following links on one of the CCSVI Facebook sites which you may be interested in reading if you haven't already…

    God Bless,
    A grateful and hopeful MSer

    1996 Paper from the Journal of Endovascular Therapy: http://www.jevtonline.org/doi/pdf/10.1583/1074-62

    A paper from 2001on reversed flow causing neurological damage and the fix reversing the damage: http://stroke.ahajournals.org/cgi/content/full/st

    • Oh yes indeed! I am forever grateful to even be at this stage. There is such hope!__

  3. Thank u Anne….This kind of truthful and accurate reporting seemed all but a distant memory,,until your article. We msers welcome this !

  4. I find it hard to believe that medical professionals continue to withhold this treatment from persons with MS. The neuros who are 'protecting their turf' (and the funding that comes along with it) at the expense of all MS patients should have their medical licenses revoked – they are a disgrace to the medical profession. They, along with the MS Society, are acting like bullies. What they are doing to persons with MS is not only unconscionable, but discriminatory, perhaps even illegal. Our government needs to step in and stop this insanity and ensure that all persons with MS in Canada be able to be tested and treated in Canada under the umbrella of our health care system immediately. 47 other countries are standing up for the rights of their citizens – Canada should be among them. In fact, it's disturbing that Canada isn't leading the way for the thousands of Canadians inflicted with this horrible disease.

    • I think if we look in the right places we will find at least a few more dirty little secrets like this! The little boy (Maddox) who's parents were told there was nothing else could be done here in Canada for his deformed face is having something done in NYC! Looks like we're not so hot after all?

    • I totally agree J Magee. Canada should be leading this charge. I find it completely shameful to be a Canadian right now.! We have a health care system next to none and it is a DISGRACE that MSers are being refused access to it!!

    • I totally agree with your comments. On our most recent visit to the neuro we were told that this procedure mostly had a placebo effect on patients and there were other treatments that were being studied that could be more promising . CCSVI was taking away needed funds for other research. I certainly have to question those comments. Their most recent study that will be taking place soon is the study of the effect of aspirin on MS patients. The nero seemed quite excited about that study but certainly was not when we mentioned the CCSVI procedure. I find it totally mind blowing that they can waste money doing research trials on aspirin and be fine with that (study to take 3 years) and not even want to consider speeding up clinical trails for CCSVI. In my opinion they can do the aspirin study for free. Just tell their patients to take an aspirin every day and let them know if they see improve in there MS systems. I'm sure that if aspirin will significantly improve the symptoms of MS they will hear about it in a hurry. Also shame on the MS Society. They should be 100% behind seeing that every patient with MS who would like to get testing for the blocked veins and if needed the CCSVI procedure done. It is total discrimination to deny MS suffers access to medical tests that could improve their quality of life and possibly save the Canadian Taxpayer untold amounts of money in health care costs as a side benefit. I think we all need to write our Member of Parliament and try to bring this issue to the forefront.

  5. I agree Magee! Horrific is not the word. DEfrock the nay-saying protectionist bunch! If we were doing what they are doing we'd be thrown in jail!

  6. Thank you so much for an accurate account of the present plight of those stricken by MS.

  7. Congratulations to MACLEANS's magazine for a concise, accurate and interesting article. I am hopeful this will further help break down the medical and political barriers that stand between MS patients and a treatment they so rightly deserve.

  8. Well said. Addressing my MS as a possible vascular issue has totally changed my MS symptoms. A night and day difference. I am a mother of 6 young children. I massage my jugular veins daily. I elevate my bed a few inches while I sleep. I have cut all iron out of my diet. My hands (perpetually frozen) warm up after I massage my jugulars. Then a few hours later they feel cold again and then MS signs reappear. PTL at least I can have relief and life again.

    • You and others should not have to suffer because of the pissing contest that is occuring with doctors and durg companies. There is absolutely no reason why the liberation treatment shouldn't be available right now to every MS patient with CCSVI.

  9. Thank you Maclean's magazine! Canadian citizens are suffering (including myself) and having to pay exorbitant amounts of money to go outside of Canada to get this treatment which can be easily provided under our health care system! Shame on you Canada! We could be a world leader, especially since Alberta has the highest per capita numbers of people affected by MS in the WORLD!

    • Tessa, thank you for your " Shame on you Canada" comment. As one of the many thousands of Canadian Ms'ers, I am finding it very difficult to maintain my belief in my country right now. My doctor, after 22 years of having her as my GP, took the time out of her day to call me and advise me that there was no validity to this treatment and that if I went for the testing, that she did not want the results sent to her office. Now I am watching my Canadian government shut down clinics that are doing nothing more than offering the screening (at the patients expense). Again, fighting MS and all its complications has never proven to be more difficult

  10. Thank you for a wonderful article that clearly explains this issue of discrimination against people with MS–we are likely to benefit from testing/treatment of CCSVI but are refused simply because we have already been diagnosed with MS. They are 2 separate conditions. When my symptoms were pain and tightness in my chest, I thought it was the "MS Hug" and I'd just have to live with it. Thank goodness my doctor had the sense to check other possibilities and I was treated for what turned out to be gallstones.

    Just because we have MS doesn't mean we might not have other problems too. If we have symptoms of CCSVI, (and I do), we deserve to be checked so that we might get some relief from our symptoms.

    Lori Batchelor

  11. Wow…thank you MacLeans, what a great synopsis of the moral and political mess we MS/CCSVI people are forced into. I hope that others who read this article also get the sense of what it was like to feel such incredible hope then have it crushed down – for what?? I feel so bereft in my own country… why won't they care for me?

  12. Thank you for a well written article! It is about time ALL Canadians with Venous insufficiencies are treated – equally! The neuros should be the ones for the right to this treatment! – in their patients' best interests.

  13. Thanks Macleans. I just received a letter from my MP who basically stated that because I have an MS tag on my shoulder I have to wait for more study. If I didn't have these letters, there would have been no doubt that my doctor would have provided me with an Interventional Radiologist who would have found my stenosis and ensured that my veins were functioning properly. I too have to go outside of Canada to receive treatment. Of course, this is not right – discrimination would be the correct word to use! Treatment is available in here, just not for those who need it most. This is neither a hoax nor a placebo. This is the real deal!

    • Would you be willing to share where you went for doppler imaging and treatment? It'sdisgusting what our healthcare system is making us do. Just because we have the MS tag we can't get treatment here but without it we could? Boggles the mind! We didn't ask for MS, nor caused it to happen to us.

      Many thanks for any info, e-mail is abarnold@shaw.ca.
      A.Arnold

  14. Watch out for "experts" who will tell you: "It is not proven yet… Results are not conclusive… Improvements are similar to a placebo effect… We should not give false hope to MS patients…". They are most probably neurologists defending their turf or people with ties to the drug industry.

  15. WOW…as a Canadian it makes me sad that in just over a month I have to go OUTSIDE of Canada for treatment. Maybe one day that will be a thing of the past! And if it is, magazines like yours that speak truth will have helped so much! Thanks!

  16. It's about time journalism got it right; good job Anne Kingston of Macleans. When I started my career as a Registered Nurse, I was in awe of the possibilities of science and how interrelated different diagnoses were. However, each one stood alone and was treated independently until a cause/effect relationship was proven. A quote that persons with MS know well is: “Learning is a gift…even if pain is your teacher”. With MS, we have experienced the pain of many losses. We lose our job or career; the ability to walk, talk, see and think clearly; bowel and bladder issues, fatiuge, a fulfilled life, and many other things. But most of all, we experience the pain of losing our independence and the hope for a better tomorrow. Thank you to some Dr's that stood behind the oath thy took. To Dr Haacke it is awesome that someone is finally keeping the diagnosis separate, and should be treated independently. I think there's a paadigm shift in the true cause of MS, somr Dr's are looking at the data with blinders on…time to remove them and get the respect back from your patiens….

  17. Thank You Maclean's! I am so grateful to this magazine for having the guts to put together such a great article which echoes the frustrations of MS patients who are being discriminated against. As an MS patient myself I feel like I am a second class citizen thanks to the Canadian Health Care System. My country has let me down.

  18. This article is great.

    MSers are treated like perpetually lost causes by the neurology community; and this state of affairs only amplifies the suffering. Determining the links between MS and CCSVI, which is certainly an important academic question, should not stop treatment of real CCSVI patients with real suffering. Compared to costs (both in dollars and side effects) of existing, marginally effective treatments, this fairly routine procedure shown itself to be safe and effective for hundreds of patients world-wide. And to think the MS Society is hiding behind medical ethics as a reason to deny treatment to people with MS in this patronizing and discriminatory manner. They are on the wrong side of medical ethics and the law; and will soon be shown to be on the wrong side of history.

  19. What is happening to the MS population in Canada is unfair, hurtful and shameful. There is a funny inclination that Canada is a leader in MS research. WELL "act like a leader". Do not run away from a new idea that might improve the quality of our lives and possibly help with your research. EMBRACE IT.

    When my wheelchair does not work, the technician trouble shoots and replace and correct the worn-out parts before he reaches the main problem and present me with options. Here is an option of a lifetime offered by Dr. Zamboni. TAKE IT.

    Why should I and other MSers suffer unnecessary pain and suffering? A main justification for a power wheelchair to an insurance company is “improving the quality of one's life”. This procedure will do the same and for less money. DO IT.

  20. I think it's all been said in the previous comments – so I'll just say ditto, And Bless you- This won't just go away.

  21. I live in Toronto and have MS. I was forced to go to Montreal in December for a simple Doppler exam (the same hand-held ultrasound devised used on the bellies of pregnant women) because Ontario practitioners had been ordered not to provide Doppler examinations IF the patient had MS. It was determined that a vein in my neck was refluxing 80% of the time when I was lying down. I was then forced to go to the US on Friday where I had the CCSVI treatment. The radiologist located and did angioplasty on three blocked veins. It took 30 minutes. A post-procedure Doppler exam showed that the vein was no longer refluxing. Fee $5k. My secretary said this morning "Hey, you're not limping!" How offensive it is that neurologists, big pharma, and our MP/MPPs are fighting to keep MS sufferers sick in order to protect budgets and profits.

    • Thomas

      We just got turned down in Montana, however my wife is getting her MRV next week at F.C. in BC. Could you email me at smithbj007@gmail.com the info on the doctor who did the procedure for you? It will be kept in complete confindence.

      My wife Judy had to quit her job a year ago and to date is continuely worsening, she was dianosed in 1994. It has been a gradual thing, but has speeded up rapidly in the last year and a half.

      Your help would be greatly appreciated.

      Thanks!!!
      Brandon

    • That's fantastic news Thomas.

      I had the procedure myself last week down here in Australia. I didn't notice anything different for about 5-6 days, but yesterday I took my dog for a walk, came home and mowed the front and back lawns, then cleaned up the yard for another few hours, then took the dog for another walk later that night. When I got into bed, I wasn't fatigued, I actually felt tired. You know when you've done a hard days work, and you know you deserve to relax? Nor did I feel fatigued at any point in time during the day, and this damn fatigue has been with me for the past 3 years. It must be placebo effect right? I honestly went in to the procedure expecting nothing. No improvments, nothing.

    • Where did you go in Montreal for the Doppler exam, and where in the U.S. did you get the CCSVI treatment? I would be grateful if you could e-mail me at gshearer@kw-law.com. Thanks so much. I am in Kitchener-Waterloo, Ontario.

    • Would you be willling to share the name of the clinic you went to in Montreal for the doppler imaging? I would really appreciate it. E-mail is abarnold@shaw.ca. I live in BC but have no problem travelling to Montreal or Toronto.

      Many thanks, A.Arnold

    • Like others I woild also really appreciate any names you could give me. you can emailme at kernan.bell@sympatico.ca
      thank you so much! and I hope your health continues to improve. Maureen

  22. What a beautifully written, heartfelt article! Thank you so much for your coverage of our urgent issue of CCSVI testing and treatment. Again, Bravo!

  23. It is as if this article is reading my mind. What I would like to point out to doctors other than neurologists is that there is a REAL money making opportunity here that they are being denied as well. Follow the money: maybe if other doctors start realizing the potential money in it for them, they will start pushing for the procedure for MS patients too! As a lawyer (with MS) the first thing that comes to my mind when I see a violation of the hypocratic oath is LAWSUIT! Maybe that will hit the doctors in the pocketbook that are refusing to allow MS patients to get this procedure!

    • We are just starting our fundraising efforts for my friend who is going to Bulgaria in September for the procedure. When I read you comment, it echoed the email that I had just sent to my daughter who is a law student after reading the MacLean's article–"who do we sue"….I am so disappointed in our government for allowing the road blocks of the testing and treatment.–actually I am ashamed of them.

    • As I have written before, I have had the testing & reveived confirmation of bocked veins months ago.
      I agree, the solution to this problem has to lie with money. So much money to be made via CCSVI-MS.
      The way I see it, there is money that will be saved in reduced drug costs as well as prevention of disability.

      Question to you Christine is this, "exactly whom would you sue?"

  24. “Not to deal with a clear vascular problem is a violation of the Hippocratic oath and is unconscionable.” Dr. Haake. Some day the medical establishment will look back on this time as a travesty of their Hippocratic oath..and so will the rest of the society and the world. My hat is off to the Canadian media to keep these fires burning compared to the US in complete media blackout. I think a good investigative reporter can check out the reasons behind legal drug pushing and the tax payers' burden.

  25. I'm an ordinary Canadian who does not have MS. I find this situation incredibly alarming. How can we deny our citizens access to medical treatment??? This is blatant discrimination, and I agree with Christine, there should be a lawsuit! I can't believe the government and our doctors would open themselves to such a liability! Treat your patients! This is your job. And it's ALL of our right.

    • Thank you Julie, its pretty sad that this can happen. I think most Canadans feel this way!!

  26. I agree that this article portrays exactly what those who have been "diagnosed" with MS are up against.

    I was born and raised in Canada and this is the first time in my life that I have ever experienced being barred from proper medical care. I am flabbergasted. If we have jugular veins that are severely stenosed they should be fixed – it is a legitimate medical issue in and of itself. I am appalled by neurologists' reaction to this potential treatment here in Canada.

    I have worked for the better part of my life and paid taxes towards healthcare. I have gone to university and have the debt to show for it and now I must go outside of Canada and pay for a surgery that should be offered here. I cannot trust that this will be sorted out fast enough here and must take my care into my own hands.

    I would love to read an in depth article on exactly what neurologists have to lose by giving up their hold on "MS".

    I am very thankful for people like Dr. Haacke and Dr. MacDonald here in Canada and I hope they keep up the good work on our behalf. We truly appreciate it.

  27. This is a human rights issue! Canadian MS sufferers are being discriminated against rampantly. With Canada having the highest incidence of MS in the world, this country should be leading the cause to treat those afflicted with MS and be a trail blazer for other countries to follow suit but instead, the powers that be are sitting back and letting Neurologists and Big Pharma continue to stake their claim on an illness that has generated billions and billions of dollars over many decades of less than successful drug use. Meanwhile Canadian MSers are being forced to pay out of pocket for a simple procedure that could and should be done on Canadian soil. This is shameful and utterly UNCANADIAN! I hope the government and the MS Society plan on refunding the cost of every single angioplasty procedure performed on Canadian MS sufferers who had to go elsewhere to find compassionate care that their own country opted not to provide for them.

  28. I think there's another, rather sinister story here and MS patients – with no time to lose – are the pawns. This disease being the domain of neurologists has meant considerable research dollars for that specialty, money that would be lost if the "disease" of MS is a mere symptom of a long-term congenital circulatory problem. Pharmaceutical companies make billions selling drugs that treat symptoms to little effect. Undoubtedly, these same companies fund neurology and drug-oriented MS research within the same closed loop. Neurologists get medico-academic prestige and funding while big pharma keeps the profits rolling in. Follow the money, Maclean's!

  29. hi,what a great article. MS patients ,especially those that have been refused scans , should get a class action lawsuit going. I have 3 stents in my heart and they sure as hell arent experimental.Violation of the Hippocratic Oath should be a Crime.There are doctors who have MS and have gone overseas for the Liberation Treatment. They should now be at the forefront advocating the procedure here in Canada.The pharmadrug cartel clearly runs the health system in this country.Thank God for the clinics in the States and elsewhere. Shame on the Canadian Govt ,MS society and doctors that know in their hearts that this procedure helps but sit back and do nothing.

  30. My sister is getting the surgery done within a BUT , of course not in the US or CANADA, Which comes to show how complicated everything in those two countries is, and the true religion- MONEY.
    Money for a plane ticket and no headache begging corrupted doctors for treatment!
    Good luck to all!

  31. within a month, sorry

  32. Excellent article but too kind by far to those who advocate years more study before allowing the procedure on compassionate grounds. The growing and compelling testimony is that CCSVI treatment will bring relief to thousands. I am talking about relief from the progression of excruciating pain, crippling fatigue, blindness, paralysis, spasticity and on and on.
    Thousands of MS patients are being whipped like dogs with no help in sight except CCSVI treatment. It offers a good chance for relief with its risks being known and low. Instead of being offered help, they are being frightened with hyperbole, discriminated against and labeled as "desperate".
    The rationale behind waiting is badly wanting and the science of placebo controls is out of date and barbaric.
    The "slow players" are badly in the wrong and they need to called out on the mat for it.

  33. I am a Canadian that doesn't have MS and I am appalled by the way MS citizen's are being denied the same rights as the rest of it's citizens! This is discrimination, this is not the way I expect my country, any of it's doctors or politicians to behave on an issue like this. THIS IS A RIGHT IN THIS COUNTRY FOR ALL CITIZENS! Doctors what happened to the oaths you took? Shame on any of you that supported this inhumane decision!!! How would you think that the people would sit back and be quiet about this injustice.
    .What in the world were you thinking? Fix this now, this is just wrong on so many levels.
    I never would have thought I'd be defending an issue like this in Canada.
    Doctors supporting this decision to deny testing and treatment to patients with MS will have to do a lot in order to ever gain the trust of their patients again. If they ever can.
    I can see class action lawsuits from 1000's in the near future, if this is not changed immediately.

  34. Finally! A journalist who knows how to report responsibly! This is wonderful. I live in the US and I've been treated for CCSVI right here at home. It's safer that way, as I can follow up with my doctor. After having the angioplasty a month ago, I have balance, can walk without a can, I have no pain, I can urinate on my own, I see better, the pins and needles are not as bad, I don't trip over my speech and I'm awake all day. I've also been able to stop taking drugs, for pain, fatigue, restless legs, sleep, dizziness, and bladder control. I feel better every day that goes by.

    • WOW. I am so happy for you Denise. This is great. Hopefully we will get here soon. This is hope for us to see your improvements.

  35. I think that the MS Society and the neurological community know that CCSVI is not only real but _the_ primary piece of the MS puzzle.

    It sickens me that they are playing word games, using their positions to throw up as much dust as they can and strong-arming compliance with their agenda.

    It's going to take an even stronger opposition from the vascular medical community to stop the charade and start helping MS patients. Professionals like Dr. Sandy McDonald are going to be the champions.

  36. This is a great article. What I don't understand is why someone who goes to see a doctor, but has not MS and their veins are block, they would unblock it no questions ask. But if we go in the MSer and we have the same veins blocked, they wont fix the problem. Makes you wonder!!! Unbelievable.
    Those doctors say that it needs more research but in my book it doesn't matter what the blockage is cause from but a vein blocked is not suppose to be, Fix it now and continue your research in the mean time.

  37. Thanks You Macleans for Honest Concise Reporting. I have MS and Now have HOPE!!!

  38. Thank you for writing such an informed and educated article on CCVSI. The public needs to know and my sister really needs this procedure. Blame the govt for getting the BIG BUCKS from selling drugs as usual as they don't want the truth to be known.

  39. On June 14th, the MS Society of Canada will announce which CCSVI research projects it will be funding. With the bulk of the International Review Committee comprised with Neurologists, I wonder if good choices will be made in how this money will be spent and whether these projects will have the relevance necessary to make the medical community embrace CCSVI. Since the W5 Program in November, 2009 and the beginning of the Liberation Rush, the knowledge of how to treat CCSVI has grown immensely. Doctors have learned that detecting CCSVI can be tricky and sometimes the hunt for the stenosis ends up being in valves or an annulus close to a valve and not the valve itself. The CCSVI Community has gone from being scared of stents to realizing that stenting prevents restenosis and stents are safe if performed in centers experienced in endovascular procedures. The amount of discovery around CCSVI in the past 6 months has been immense, and research projects should focus on this new knowledge and not on old-school concepts based on what neurologists thought was Multiple Sclerosis.

    • I for one will not be giving any more money to The MS Society. They have not been supporting the people they are suppose to be helping. It took them a long time to ask for funding money and the studies they are suggesting are not being ran by specialists in that area of expertise. As well I see conflict of interest as the MS Society gets some funding from drug companies. Correct me if I'm wrong but I believe it was just recently that they asked for this research money. I saw a program on W5 last November on this topic and if they were really working for people with MS as they have led us to believe when they ask for our money, it is to help people with MS.
      Why were they not asking for government funding, the next day after the program aired. Don't tell me that their phone lines weren't ringing off the hooks.
      From now on my donations and fund raising efforts will not go to bias CCSVI studies with people that are trained in this area, not funded or controlled in any way by drug companies or by neuro's..
      Shame on you MS Society!!

      • CCSVI is a paradigm shift, and that's not an easy pill to swallow. Imagine you're the MS Society and you're entire existence has focused on MS being a neuological disease. Then Paolo Zamboni (and let's not forget the team at CTV and others that brought the story to North America) comes up with this theory that puts everything you've been working towards at question. It doesn't help that your advisors are cynical, territorial and maybe even a bit paranoid, they're part of the culture that makes up what you do. And you've been doing your best. Raising money. Disbursing those monies. Funding research for medicines that might make the big difference.

        My reply is too long so see part 2

        • Asking the Feds for $10 million was seen by many as opportunism, piggybacking off the grass roots protests held on May 5th. I prefer to call it "s a v v y " – at least it looks like a step in the right direction – and completely opposite of how they were reacting in their "CCSVI Educational Seminars" a few months ago. They're learning too. They have no choice with the waterfall of anecdotal evidence thats faciing them. But if they're serious about embracing CCSVI they'll need people on their Board who are advocates, people who had CCSVI and have been treated, and they will need independence, leadership and courage to move this forward – the key ingredients for any business which needs to reinvent itself. CCSVI is the start, there's still a lot to be done and there will probably be room for neurologists. But they won't be the top dog anymore. Unless, of course, the research gets rigged and the results are inconclusive and the medical community dismisses CCSVI as being "trivial".

  40. Finally…someone who understands. I have MS but my appointment on August 20th for an ultrasound may confirm that I also have CCSVI. As I am almost quadroplegic. As of now I would have to consider asking two caregivers to accompany me on a two hour drive to Toronto, two hour wait at the airport and 5 hour flight to a country that offers angioplast at a cost of at least $10 000.00 Unfortunately that is not a possibility for me. The Ontario government could offer a $1500.00 OHIP covered day surgery at my local hospital. Perhaps they would prefer we payed as this would encourage they're two tier health system. WE NEED HELP NOW, THE CANADIAN GOVERNMENT IS CAPABLE OF MAKING A DIFFERENCE AND IT IS TIME TO STEP UP!! DO YOUR JOB!

  41. I found this article to be very interesting. I do not have MS, however I know a few people diagnosed with it. Your article seems to indicate there is a turf war between doctors. I think it might even go further than that. What about the pharmaceutical companies that will be losing millions of dollars if MS patients are actually treated for CCSVI are improve. I think perhaps they may be pulling the strings!

  42. This is shameful. I am writing to my provincial health minister. Thank-you, Maclean's, for the article.

  43. ANNE, you are BRILLIANT!!! Every single word you wrote hits the note of true journalism. I hope your employer knows how you have added INTEGRITY to MacLean's magazine, even more!! Your true and factual reporting gives all of us MS'ers more HOPE that one day soon the neurologists will let go of the noose they are holding around our necks and let the vascular doctors "take over" our initial care.

  44. Brilliant article!! My daughter and I both have MS, and even though "progress is being made" as Anne states in her article, time is of the essence and does not wait for those of us who have MS. This is a progressive disease, and it's absoutely shameful that our country is withholding treatment. A lawsuit sounds like a good idea…

  45. This article left me with two strong reactions, one – I found myself shaking with anger at this stupid impasse, the other, a sense of hope that because of the work of some credible and caring individuals, and because McLean's continues to act as an advocate for fairness, objectivity and compassion.

    I am stunned that our political establishment cannot easily see their way to make the right choice quickly. I can only imagine how many other political decisions are made with the backdrop of influence by moneyed interest groups if a decision as morally and practically simple as this one is so difficult for them to make. Shame!

  46. It's been a rare moment that I've shed a tear over being diagnosed with MS three and half years ago. It's just been my cross to bear. Today I cried reading this article. Thank you for crystalizing my thoughts.

  47. I lost someone to MS.
    The fact that this procedure is not immediately being offered in Canada to each and every MSer who wants it is disgusting.
    This type of protectionism makes the health care system in this country look like a farce.
    There must be a neurologist somewhere in this Canada who has MS, or has a loved one who does. What actions are they taking?
    A curse on all who oppose this.

  48. This is fundamentally wrong in a free country.

    Doctors want to do it.
    It's risk free.
    Patients want it.
    Maybe it doesn't work, but if the doctor and patient want it and it's risk free, then nothing should stand in their way.

    Only the government stands in the way.

    This is where the left should realize that handing away their freedoms comes with a severe cost – their freedoms. He who exchanges freedom for security gets neither.

  49. If one looks at the scenario it smacks of the SAME thing which happened with the Nobel prize ulcer cure. It took many years before they began to use it at any rate. The reason they believe this is happening is because those doctors specializing in gastrointestinal disorders and surgeries DUE TO this ‘ulcer’ would / are being put OUT OF BUSINESS. So the doctors do not prescribe the cure because it would cost them $$$$. Marshall got a Nobel prize and the doctors won’t even prescribe it.
    Believe it or .. not.

  50. I think this article is an example of very poor – and sensationalistic – journalism which is grossly misleading and inaccurate. Venous angioplasty is NOT a standard treatment, least of all for idiopathic intracranial hypertension, though if CCSVI were a real clinical syndrome, we might expect signs and symptoms very similar to that condition. More to the point, while Zamboni's work hypothesizes a vascular cause or contributing factor to MS, this is within the context of the very well documented disease process of MS: inflammatory demyelination of neurons in the central nervous system. While the "miraculous" results experienced by many anecdotally following the so-called liberation treatment are notable, they are far more consistent with a placebo effect. A sudden reversal of a demyelinating process is not possible, but an improvement in symptoms is certainly common in a disease that is often characterized by relapsing and remitting phases.

    I find it surprising that the author evidently made no effort to interview any neurologists or basic scientists engaged in MS or any other kind of relevant research. Instead, we have the typically sensationalistic "story" of a "turf war" and the corrupting influence of Big Pharma and the MS "establishment". The notion that there is anything "risk free" about embarking on a treatment of unknown efficacy for a condition which may or may not exist and which may or may not be related to MS is ludicrous.

    • You are one of the few people on here who took time to research the topic at hand. You seem to have a firm understanding of the research limitations and simply the scope of our current technological advancement. Thank you for taking the road less traveled and enlightening the open-minded to the reality of things.

      Nevertheless, I do feel pharmaceutical interventions still take precedence for this particular population, which is a little disheartening.

  51. "Pfizer Halts Eplerenone HF Trial Early Due to Drug Benefit"

    Can ANYBODY see a difference between THAT and the benefits ALREADY shown in those with MS .. ?
    IF this treatment by Zamboni was a drug it would be NOW already approved for use but since it is NOT a drug with a company like Pfizer behind it the 'impetus' seems not to be there.
    One might wonder why a company with SO MANY fines levied against it for criminal activities is even allowed to compete with Zamboni. They should have been beaten and strung up LONG BEFORE NOW .. imho ..

  52. THANK YOU THANK YOU THANK YOU for this informative article. Two and possibly three of my 4 sons live with MS. I don't care what it takes, as long as it's safe and simple – I want my sons to have access to it. If they can enjoy a better quality of life and still live with MS – that's ok. I hope you will continue to keep this issue at the forefront – please don't let it die after such an amazing start – I know that I will continue to do all I can to make sure people know about this mess. I'm mad as hell and I'm not going to take it anymore

  53. "Discontinuation of Aspirin Increases Risk of Stroke in Patients With Cardiovascular, Cerebrovascular Diseases: Presented at ESC"

    Increased stroke risk. Sooo in effect what they DID was REMOVE the aspirin and watched them stroke .. out ..
    THAT is what doctors .. dooo .. and THAT is why one HAS to be VERY leary about what doctors ARE capable of doing. They did the SAME with sickle cell patients. There was a 'theory' as to the HIGH use of blood transfusion sooo what did they dooo ? They QUIT the transfusions and said .. "look they die screaming" ..
    Believe it or .. not ..

  54. Ah, yes. Our "best in the world" health care system at work again.

  55. i was diagnosed with primary progressive ms ten years ago. i am disgusted with our government and the neurological doctors who refuse the idea of ccsvi being a possible medical condition. i must agree with everyone that this is a violation of the hippocratic oath that the doctors should be standing behind. maybe we should file a class action suit against them as this might light a fire under their butts and make them get closer to finding answers to this horrible condition.

  56. Anne, you wrote a wonderful piece regarding the plight of MS patients. My wife Michele and I needed to circumvent the process as well and traveled to India for the treatment and like many others following this story the results have been improved health. Unfortunately after a recent visit to our neurologist, I am even more resigned to the fact that doctors are more concerned with their domain versus the welfare of the patient they claim to serve. His defense and negativity did more to unnerve my wife than the treatment she experienced. Not even a single comment as to how she was doing after the treatment – sadly I was not present to remind him of the PERSON that sat in front of him that day. Maybe a revisit of the Hippocratic oath is in order, Here are two from the Modern day oath that all neurologists would be reminded of….

    I will apply, for the benefit of the sick, all measures [that] are required, avoiding those twin traps of overtreatment and therapeutic nihilism.

    I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon's knife or the chemist's drug

    Discouraged by their position but determined to do whatever it takes to improve the health of my wife

  57. One of my friends has MS and, i think it is a terrible disease… but most of the people do not know much about MS, and i hope, no one will have to learn….

  58. Thank you so much for this article. So many news articles have incorrect information and miss the whole point of the stuggle that MS patients are having as well as the struggle that the "good" Doctors are having trying to treat a simple medical problem that thousands and thousands of Canadians have.
    Letting these Canadian people suffer and die is paramount to denying staving children of the world food or medication to the worlds AIDS sufferers. The point being it's WRONG and we, being the MS patients and the Doctors who are trying, need help from everyone in Canada. We need everyone to stand up and say, "This is wrong and we need to allow treatment to MS patients now." Please support us because the MS Society of Canada is NOT supporting us and either are the Neurologists. We are not the property of the formentioned people, we are Canadian citzens with a terrible disease and we need help and it's available yet we are being denied.
    Thank you MaCleans magazine please keep up with news articles until we are given the treatment we need!

  59. Entrez le texte ici!

  60. This is a finding JUST published about the continued use of drugs PAST the two year mark AGREED upon and WHY it seems these drugs WERE used past the agreed upon mark. It looks like the investigators have found an odd relationship between these .. people .. if one can use the word loosely.

    "The scientific advisory group included representatives from the four drug companies, two MS groups, and the neurologists treating patients, all of whom had lobbied for the continued use of the drugs on the NHS."

  61. I just took my 17 year old to Sk'toon to see her MS Doctor, this would be the second time I've mentioned ccsvi treatment. The first time she said not enough study, then 2 months later I mentioned the progress of the study if she had heard anything .

    She was so negative about the study had nothing good to say about about the treatment, that we were not getting the same results that Dr. Zasmboni was leading us to believe. Yet when I research this amazing treatment you hear nothing but great outcomes.

    Yes, we to are so disappointed in our Dr. as well. My daughter has been living in pain since she was 12 years old and gets worse every day and finally there is some hope and you would think your Dr. would be the first to support you in this great new event instead they give you no hope.

    Ann-Dee Nunweiler

    Ann-Dee Nunweiler

  62. Dr. Duncan, the MPP for Etobicoke, and Dr. Carolyn Bennet, the Liberal Health Critic, in a Parliamentary Subcommittee, had as witnesses, Dr. Sandy Macdonald of Barrie and Dr. Mark Haacke, professor and inventor of MRI techniques, and may soon have Dr. Paulo Zamboni as well. They also had an MS patient who had the procedure in Poland and is now improving. These doctors, and many others from around the world, all support this treatment. This is a clear case of discrimination, tantamount to enslavement, of people who through no fault of their own have become the chattels of wealthy members of the neurology-pharma complex. At the time scientists were investigating (again) the vascular origins of this disease, back in, when, 1977, 1965, 1934, 18??, MS victims were being given experimental surgery with irrigation of their spines (sound painful?). What would these healers do without subjects to experiment on? Dr.Jock Murray of Halifax, before the same Subcommittee: "If they all got treated, no-one would go in a trial."

    The MS Society who are trying to get 10 million dollars from the Canadian taxpayer, have sat on their hands since last November, offered an amount for research into CCSVI that is a pittance, have as sponsors major drug vendors and high priced neurologists on their boards, and are not qualified to do science. They do not represent people with MS. They are as guilty as anyone of discrimination against people who have the luck to have this disease, which is used as a cash cow and source of subjects for arbitrary experimentation.

  63. Where are the Political Leaders now? A perfect oppourtunity for a leader to take charge and be known for something REKNOWNED. Stand up and say yes to this procedure and every person in Canada will know who you are and what you've done. This is going to happen soner or later. So put your name on it NOW. This is a no loss situation. This can be done by a Provincial or Federal leader.
    The news headline will read "Stephen Political Leader has put a STOP to NEEDLESS MS SUFFERING"

  64. I'm from the Netherlands and my husband has MS. The situation here is about the same as in Canada. Therefore we are forced to go to Bulgaria next week for the diagnosis and (possibly) the treatment. I could have written this article myself! I am happy to see that somebody finally gets it, and puts it in the exact right words. Why are people with MS dinied testing voor CCSVI just because they have MS??? It is completely ridiculous. Everybody with a normal IQ should be able to understand this. Is it the arrogance of the medical scientists who don't want to acknowledge that they have been on the wrong track for ages? Is it a lack of empathy, or is it the power of the farmaceutical industry, that are afraid that their absurdly expensive medicines will be redundant? I think it is all of it together. But who really cares, it is an utter disgrace! I totally agree with the comment that the medical science will probably understand that it was a disgrace in a few years time, but that thought doesn't comfort MS patients, because they may be incurable by the time that all of them say sorry!

  65. Great article. Great reporting. It put into words my frustration. I sat in on the Sub-Committee meeting described in this article. I was moved to tears by the testimony of the two individuals afflicted with MS – who have seen profound improvements after the Liberation procedure.

    Shame on the neurological community and the MS Society of Canada for a wait and see – research, research, research stand. This is not a new drug. This is a procedure that is in current practice…I guess just not for MS patients!!!!

    Prohibiting MS patients the same kind of care and access to treatment is "criminal".

    Janet Salloum's statement – It's like watching someone drown while people test flotation devices – is a brilliant analogy.

    Mark Haacke's comment – “Not to deal with a clear vascular problem is a violation of the Hippocratic oath and is unconscionable.” – says it all. Shame, shame, shame.

    Perhaps a class action law suit against the Government of Canada and the Provincial Governments is in order!

  66. Understanding this with numbers (and no, it's not because of gvt or money)
    3% of doctors innovate
    15% will try something new

    Everybody else won't budge unless it has been studied significantly or extensively. And then there are those (about 20%) who won't change their practice methods unless threatened one way or another.

    This isn't a new problem in medicine or even an uncommon one. Aspirin for instance was discovered to be beneficial during heart attacks in the 1950s, but it took 30 years before it was adopted in practice. Another example is that a surgeon has to establish himself within a department and be working for some 10-odd years before being permitted to venture with a new idea or method.

    Now add the fact that physicians are by nature conservative in their practice, territorial and can be quite defensive when faced with things they don't understand, I ask you: is the article that much of a surprise? The only fault we can attribute to "the system" is that it has removed the sense of competition and that leadership has been perpetually deferred.

    Some food for thought: how is it, when the world has moved into the information-age, are doctors still struggling with the computer age (less then 25% of practices have complete digital records).

  67. Blocked veins Research Group is proposing two new board members for the MS Society Board so we can influence research priorities and get more money for CCSVI research. Please follow us on facebook.com for more information. You can join the MS Society and fill out a proxy form to nominate our candidates.

    http://www.facebook.com/pages/CCSVI-Blocked-Veins

  68. As a Canadian citizen with MS I am very grateful for the spearheading of Doctors worldwide who are forward thinking and open minded about CCSVI and it's effects on the body. My neurologist debunks this treatment and has told me not to hold out any hope for it. I thank the Doctors out there who value the treatment of their patients as primary. These Doctors do not impose onto their patients their own narrow minded beliefs/guesses about a disease whose cause is still not known. How do we find a cause and or a cure if we are halted by limitations set by neurologists who are not able to see beyond or even consider the possibilities. It is not about who owns this disease and who should be treating it. It is about finding a cause and a cure plain and simple.

  69. Those people who say the REASON for the LACK of momentum FOR this treatment is that "neurologists will lose money and neurologists are soooo money hungry they are fighting it tooth and nail" .. just may be right.
    "The news this month that maternal health is improving across the world, public health experts should have been celebrating"
    "The journal also revealed that some women's health campaigners had put heavy pressure on it to delay publication of the data because they believed it might threaten their funding"
    "Epidemiologist Elizabeth Pisani, currently a visiting fellow at DePaul University in Chicago, says that death has become a valuable commodity for people seeking funding to support their cause"

  70. Isn't the MS Society suppose to advocate on behalf of those suffering from this terrible disease? Sounds like there not doing their job and people wiht MS shoud form a better advocacy group.

  71. Excellent article. Thank you as a MS'er. I have had MS for 11 years…
    I have R&R (Relapsing & Remmiting) MS. I take no medication. Thank God. However, my last attadck (optic neuritis) has diminished my eyesight. Do I need to wait for more damage? No is the answer.
    All goes well, I will be going to Albany, New York in September 2010 to spend my Canadian dollars to a health center who cares about healing.
    I am ick of complaining how our Canadian government is not standing beside thousand of people with MS.
    This is a possible cure for us!

  72. JMG obviously, IMO, has vested interest in the pharmaceutical Empire and/or neurologic generated $$$$. I believe the donation of 50 yrs of people.s lives and the consumption of the experimental poisons is quite enough!

  73. One rational voice so far in a flood of evangelistic sentiment. A simple cure for a complex disease? How wonderful! Open the veins, drain the brain of too much blood, and the circulation in your legs will improve! I think I will learn the procedure and liberate both veins and wallets..

  74. Thank you for bringing the MS dilemma to the forefront of a suffering population. We hope that you will pursue this issue as it falls under the category of investigative jounalism. It therefore merits all the attention and coverage the media can provide. With 3 afflicted family members, we are faced with severe resistance and are fighting a monolythic battle with the medical profession, specifically the neurologists. My family physician regards Dr. Zamboni's discovery as "quacky". Cats or dogs requiring an MRI, would not be rejected. This is all about providing the "gods" (doctors/neurologists) with job security. Only in Canada!

  75. Many MS patients do not have the luvury of waiting. Please help these people by signing… Thank you.

  76. Thank you, Macleans.ca for your article. I am glad to read compassionate words. I, like many other MS sufferers, am rapidly losing any quality of life. How shameful our health system has become. To be a Canadian with MS is a death sentence. I have been a defender of our universal health care system in Canada. But now I see that it is universal only for those who have the good fortune of not having MS.

  77. I wonder whether it could be done within the Aboriginal Health Care system .. ?

  78. Out of the shadow of an intransigent medical community in this country, I am travelling to far away Bulgaria to receive what surely could be provided here in this country. Perhaps I can be called lucky, having been diagnosed 27 years ago, and still being able to stagger off to work, but my mother was not so fortunate. I will never forget the ruthlessness with which this disease overcame her, to the point of absolute incapacity and ultimately death from blood poisoning resulting from a bed sore. Perhaps I will not follow this path, but the thought that I might makes my trip to Bulgaria so much more important, not just for me, but for my entire family.
    When I come back after hopeful great success I pledge to fight for the rights of MS sufferers in this country to access a treatment that should be their right.

  79. This article was very alarming to me & those friends who read it…let the MS patients sign whatever waiver so they can get whatever treatment that will ease their pain!

  80. Although late to the table, I'm in the process of researching Canadian media health specialists in order that I may send them a copy of a letter I have written to members of Federal and Provincial Parliament. After watching the Subcommittee on Neurological Diseases hearings, just sending a letter to MPs and MPPs seemed as though I would be screaming into the wind. Now that I've brought myself more up to speed on the media coverage CCSVI has already received, I wonder if there is any way to win. Your article perfectly expresses the cruel and appalling situation in which we, Canadians with Multiple Sclerosis, presently find ourselves. Thank you for so boldly expressing our pain and frustration.

  81. Thank you Macleans and Ann Kingston for taking on the challenge of enlightening Canadians to the plight of MS suffering. It has been a wild ride for us since Nov 2009. Yes there is help, no there isn't. Well if you have moneyand can travel outside of Canada there is help, if you have a diagnosis of MS no help in Canada. I copied your article today and took it to my GP to get her up to speed with what is going on. With a shocked look she said" you mean if I had blocked veins I could get testing,surgery and treatment in Canada, but since you are an MS patient you can't? Then she stated "thats f—-'n ridiculous". I told her that after meeting with my neurologist last month I was so excited that UBC was recieving funding for CCSVI trials from the MS Society. That balloon was quickly popped when I found out the details. The $750,000 is to be shared with U of Sask The study is for 30 MS patients from each university who are preferably identical twins. One with MS and the other without. The Buffalo study is for 800 MS patients who may have blocked veins. Now that is f—-'n ridiculous. The study will be too small to be conclusive.

  82. Has anyone ever heard of a drug that is given unknowingly….usually by gang members…to make someone feel like committing suicide . Please reply if you know. My daughter is now feeling this way after dating a ex-gang member .

  83. I've noticed several MS patients are beginning to file Human Rights complaints. Discrimination means making a distinction between certain individuals or groups based on a prohibited ground. Under the Canadian Human Rights Act and Human Rights Codes/Acts of all provinces/territories, one of these prohibited grounds is mental or physical disability. It seems it would be a totally valid case if put into motion.

  84. It's scary what you're saying, we have twenty-first century and this situation here: (

  85. An oral drug for multiple sclerosis has been approved for some MS patients in Canada.

    Previously, drug treatment options for MS patients in this country were limited to medications taken regularly by injection or infusion.

    Gilenya, also called fingolimod, is a capsule taken once a day for people with the relapsing-remitting form of MS. These patients have relapses that continue to worsen in severity, disability level, or who are unable to tolerate injections.

  86. Canada is setting the difference and other countries should keep open eyes.

  87. i really appreciate them who are eager to face a surgery and their thought of diagnosing the patients. it should be set up every where.

    Travel Clinic W3

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