Canadian MS Society endorses CCSVI

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Canadian MS Society endorses CCSVI

Postby L » Thu May 06, 2010 8:26 am

MS Society endorses new theory

WINNIPEG -- A big announcement from the national MS Society could mean the tide is turning for supporters of a hot-button new theory on multiple sclerosis.

On Wednesday, the MS Society of Canada announced it will lobby the Canadian government to channel $10 million into researching a link between blocked veins in the head and neck -- a condition dubbed chronic cerebrospinal venous insuffiency, or CCSVI -- and MS.

"The MS community has spoken. They want access to diagnostics and treatment for CCSVI in Canada," said Linda Lumsden, chair of the national board of directors for the MS Society.

The announcement came on the same day that thousands of supporters rallied at government buildings across Canada to demand increased access to research, testing and treatment for CCSVI. In Winnipeg, members of the grassroots advocacy group CCSVI Manitoba returned from an afternoon rally at the provincial legislature to discover the MS Society's announcement.

"This is extremely exciting," said Nicole Boyd-Benes, who helped organize the rally. "This is what we've been pushing for since we got this organization together. Finally, it feels like we've been heard and that the MS Society is listening to us. I finally feel like I'm supported... now I hope it follows through!"

Lumsden will meet today with federal Health Minister Leona Aglukkaq to formally request $10 million in CCSVI research funding, to be directed to the Canadian Institutes of Health Research. Previously, the MS Society had opened a competition for funding proposals for CCSVI research. The successful proposals will be announced in June.

Critics have sometimes characterized the MS Society's response to CCSVI research as sluggish. Meanwhile, many Canadians have taken matters into their own hands, spending tens of thousands of dollars to travel to a clinics in Poland and India to get their veins opened by balloon angioplasty in the hope of relieving MS symptoms.

"The safety and health of people living with MS is our primary concern," Yves Savoie, president and CEO of the MS Society, said in a statement on Wednesday. "The Government of Canada can play a leadership role in addressing the needs of Canadians living with MS by funding research, including clinical trials in CCSVI and MS. Doing so will both advance research and provide safeguards to those seeking treatment." ... 46084.html
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Postby Farmer » Thu May 06, 2010 8:56 am

As long as they include treating people and as soon as they have positiv results (even short term) turn over and treat everybody.
They still can keep on doing more research.
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Postby fogdweller » Thu May 06, 2010 11:37 am

Farmer wrote:As long as they include treating people and as soon as they have positiv results (even short term) turn over and treat everybody.
They still can keep on doing more research.

Actually they can't keep doing research after they get positive results. If treating CCSVI with angioplasty becomes standard of care, then it is unethical not to treat MS by relieving CCSVI with angioplasty. This makes it impossible to keep doing more reseach. Trials that randomly compare teatment to non-treatment become unethical. The only people who can go untreated are those that do not qualify for treatment for some reason, and those will certainly not be random.

I only bring this up as an issue. Other treatments that are declared to be standard of care before careful studies are done cause this same problem.

Also if there is a drug treatment (DMDs for example) that is considered the standard of care, then treating the CCSVI is only acceptable if you also use the drug. This means you can only compare drug only with drug plus angioplasty, and interpreting the results becomes confusing.

Personally I would like the treatment studies to go forward as fast as possible, and for angioplasty to be available for everybody who was not a candidate for inclusion in a trial or refused to sign the informed consent and take part in the trial. Of course, this would mean anyone who was absolutely convince it would work would probably opt out of the study and not take the chance of being in the non-treated cohort. This to would be a confounding element, i.e. the non-treatment group would include few if any people who strongly believed it would work. ( Maybe all neuros? :) ).
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Postby cocochanel » Tue May 18, 2010 8:52 pm

Fogdweller, they could keep doing research. They need to find out why normal folks have constricted veins too. Will this cause problems that are as yet, unforseen? Like Alzheimers, Parkinsons...
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Postby Cece » Tue May 18, 2010 8:59 pm

cocochanel wrote:They need to find out why normal folks have constricted veins too.

I think this was not proven beyond doubt but only showed up in a single study (albeit a large reputable one, Buffalo) and not in other studies. I wish they could have cross-tested those people who showed positive for CCSVI with venograms as well. Some people here have reported differences between what their MRVs showed and what was found when the IR went in with the venogram...I suppose I could make a separate thread asking about that (how accurate MRVs have been, compared to venograms, anecdotally), that might answer my own question!
"However, the truth in science ultimately emerges, although sometimes it takes a very long time," Arthur Silverstein, Autoimmunity: A History of the Early Struggle for Recognition
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Anne Kingstone Interview

Postby Chrystal » Tue May 18, 2010 10:38 pm

A fellow MSer forwarded the link below to me. Listen to this entire interview with Anne Kingstone, the journalist who wrote the "MS Cure" article in MacLeans on May 7, 2010.

A.K. talks about her half-an-hour conversation with the MSSC CEO & Pres and some very surprising statements he made which she was not able to include in her article. Basically, he said that he did not support a surgical solution to CCSVI, but rather a pharmacological one...she was shocked as well. ... bout-ccsvi
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Postby belsadie » Wed May 19, 2010 8:35 am

Let's not look up the chicken's ___for the egg. This is great news. Congrats to all Canadians. !
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Postby Whitey » Wed May 19, 2010 12:44 pm

@Chrystal - That interview is really a bit of an eye-opener! Definitely worth a listen. Good find!
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Postby Chrystal » Wed May 19, 2010 7:18 pm

Definitely an eye-opener. Hadn't heard the interview until a fellow MSer forwarded it to me. Wonder how many other MSers may have missed it. Think I will put it in a new post (hope no one minds) because all MSers and our supporters really need to hear this.

Take care and keep well.
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Postby Villagemaid » Wed May 19, 2010 8:28 pm

HA HA HA belsadie......that was hilarious....and SO fitting.....

35 (f) dx'd since July 2000 RRMS
Treated in Bulgaria on September 8 2010
80 percent narrowed RJV and 90 percent narrowed Azygos
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