MS Society of Canada earmarks $1 million for CCSVI clinical trials - Macleans.ca
 

MS Society of Canada earmarks $1 million for CCSVI clinical trials

Awaits results from research studies currently underway


 

The Multiple Sclerosis Society of Canada will commit $1 million for a chronic cerebrospinal venous insufficiency (CCSVI) and MS pan-Canadian therapeutic clinical trial—if research projects into CCSVI funded by the society currently underway indicate such trials are warranted, Yves Savoie, the charity’s president and CEO announced today. “We want to hit the ground running when a therapeutic trial is warranted and approved,” Savoie said in a press release. “Ensuring funds are available to support a Canadian trial will accelerate our ability to get definitive answers to the questions people touched by MS urgently seek.” The charity, which hopes to secure additional funding from the federal and provincial governments, has been under attack by MS patients who must travel to offshore clinics to receive the procedure pioneered by Italian doctor Paolo Zamboni because it is not currently available in Canada.

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MS Society of Canada earmarks $1 million for CCSVI clinical trials

  1. When will they finally going to start dooing the stents???and unclogging veins?? “We want to hit the ground running when a therapeutic trial is warranted and approved,” Savoie said … I say Bull s#;!+ While the MS society dithers, thousands are suffering and hundreds will die!

  2. The MS society has made millions in charitable donations this year alone…yet they have only put aside 1 of those millions to study CCSVI and the nearest MS patients have come to an actual treatment in the past 150 years! The MS society is still blocking the chances of treatment so, Yes I am angry! Who is the society supposed to be helping? The Drug Companies??

  3. ms society, how dare you make this empty p.r. splash. until you really serve the sick instead of the drug companies you'll see more and more of us bring donations to a grinding halt. and use those funds to treat ourselves, and loved ones overseas.

  4. Meanwhile, those with far greater vested interests shriek about the vested interests of the MS Society and of Canadian health researchers…

  5. I completely agree with the MS Society's position on this. Well, I have no idea whatsoever what clinical trials cost so have no opinion on whether the money set aside is too much, too little or just right. But to first see if studies into the assertion warrant a clinical trial seems the prudent, responsible thing to do.

    Yes, MS sufferers don't want to wait if it really is 'the cure'. But do we need MS sufferers to try out every snake oil salesman's remedy? Because, while I hope Paolo Zamboni is no snake oil salesman, what would be the difference if we just take his word for something?

    • Proposals from UBC and McMaster put a 200 person (100 MS patients & 100 healty controls) at about $5 million.
      Mr. Savoie said any real clinical trial would require a pan-Canadian approach involving at least 1,000 patients.
      So, according to Savoie, we would need 10×100 patient trials, therefore we need $50 million.

      Now, I don't believe huge trials are required. Results from NY, Kuwait, Poland, etc show 1/3 have major improvement, 1/3 have some improvement and 1/3 have no improvement. Even a trial of 100 patients should show this. The MSSoC is used to huge trials because the marginal results from drug therapy are so miniscule, it takes a huge trial to show statistical improvement. Drug trials take years, because they have to study athe patient cohort for at least two years to count relapse frequency. CCSVI treatment, on the other hand, yields results fromg day one, and should be able to be verified by comparing neurological tests immediatly prior to treatment with a follow up test 3 months after treatment.

    • Jenn, I sincerely hope that you or anyone you love never gets MS. We don't try out every snake oil salesman's remedy, and we are not just taking Paolo Zamboni's word. The results of those who have travelled to Poland, India, the US and Mexico are amazing – and Canadians should not have to take a number in order to find some relief.

    • Jenn_,,,you do have no idea whatsoever! ..Who's word are you taking?? The whole snake oil analogy is getting so old and to me seems like such an expression of ignorance. Finally…that's DR.Paolo Zamboni, and darned straight I would take his word so far about his findings and the need for more study!

  6. This is the worst case of damage control ever! The MS society has finally relized that Canadians have caught on to them. They are not in this for those that suffer they are in it for themselves. Dry up the donations, fold up the MS society and a rebirth of an association that cares for people that suffer with MS will emerge, hopefull mindfull of what happens when you screw over innocent people!

  7. Well that is easy – trials should be NOW since the rest of the world including the doctors in the US are finding it VERY warranted. Canada is looking not only greedy and Pharma-run, but stupid as well. Shame.

  8. Well, whoop de do, MS Society of Canada! Nice of you to release a whole million dollars and then "hope to secure additional funding from federal and provincial governments." What are you doing with the millions of dollars raised annually from MS patients and their families who walk, ride, run and pledge their money for a cure?

  9. Rumour has it that this $1million was actually earmarked by the donors themselves, and the MSSC is simply spinning it to sound like they have decided to spend the money this way – when in reality the donors told them to spend the money this way and that are now obligated to do so. Macleans should look into this.

  10. I think the drug companies have stolen enough of our money already. Drug companies have an acceptable patient loss while doing clinical studies and in reality they are more concerned about their profit margin than the health of the patient. To the drug companies the loss of a couple of lives is nothing compared to their question, “how much profit can we make and for how long”!

    There is a great deal of vascular disease in my family and I have noticed over the years the similarities in symptoms with MS. I was personally told my father's vascular specialist to be tested but I am unable to find one doctor who will refer me for Vascular Imaging.

    I think the only way to receive proper medical attention in our own Country is for everyone with MS to gather together, hire a lawyer to ensure we receive Vascular Imaging to determine if we do indeed need surgery.

    The MS association along with the neurologists should be ashamed of themselves for their lack of assistance to people who have this debilitating disease.