Letter from President MS Canada

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Letter from President MS Canada

Postby Blaze » Sat Sep 11, 2010 5:08 am

Here is a letter of September 10 from Yves Savoie, President of MS Canada.

Now, he claims MS Canada is "eager to participate" in the prelimary work for a top quality pan-Canadian therapeutic trial to test clinical CCSVI."

I guess that eagerness was what led MS Canada to seek $10 million from the feds for research, then serve on the very CIHR panel that voted unanimously to deny trials.

Here's the letter:


Friday, September 10, 2010

Dear members of the MS community:

In the past two weeks, a great deal of coverage on CCSVI and MS has been generated. I’ve had the opportunity to speak with many of you on this very important topic. I have carefully listened to those of you who have expressed disappointment and anger at what has been perceived to be the MS Society of Canada’s negative stance on CCSVI. I am personally writing to you so that the views of the MS Society of Canada can be presented unfiltered.

The MS Society of Canada is eager to participate in the preliminary work for a top quality pan-Canadian therapeutic clinical trial to test CCSVI. We share the interest that thousands of Canadians have expressed in the potential of CCSVI. Our eagerness is already reflected in our joint funding with the National MS Society (U.S.) of seven clinical diagnostic studies at a combined total of $2.4 million.

The Federal Minister of Health has accepted the Canadian Institutes of Health Research’s recommendation to create an expert scientific working group to monitor the results of these studies. The experts assembled will analyze the evidence about the definition and nature of venous blockages and their relationship with MS, since this information will be central to obtaining ethical approval to enrol participants in a trial.

The MS Society is committed to doing all that it can to ensure that an eventual trial, if proven feasible based on the best available scientific evidence, will be rigorously designed and implemented to obtain the conclusive answers that we all seek.

We will continue to accelerate the research process so that definitive answers to the theory of CCSVI can be available at the earliest possible time. I look forward to the MS Society playing an important role in the preparations for a therapeutic trial of CCSVI and, if feasible, for its implementation.

I also want to reaffirm that the role of the MS Society is one of guidance and its responsibility is to provide credible, timely and accurate information. We recognize that the decision to seek any kind of treatment is personal and we respect these decisions. We recognize and celebrate that people have experienced benefits from the CCSVI procedure.

Please know that our actions are based on the mandate of keeping all people living with MS at the centre of our work and this will continue to be what drives us as we move through this exciting new phase of MS research. I believe that at the heart, we are unified in our desire to end MS.

Yours truly,

Yves Savoie
http://www.facebook.com/notes/multiple- ... -of-canada
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Postby 1eye » Sat Sep 11, 2010 2:25 pm

Dear Yves:

You don't know me, but I feel better.

See, last week I had the Liberation procedure. I used to have MS. And I used to subscribe to the MS Society. I used to fund-raise (walks, biking,etc.). So did my son, who was in the bike-ride at 8, and won the $1000 shirt once. And my wife, and my friends. But I will not be going again, and neither will they.

-Chris Sullivan
"Try - Just A Little Bit Harder" - Janis Joplin
CCSVI procedure Albany Aug 2010
'MS' is over - if you want it
Patients sans/without patience
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Postby MegansMom » Sun Sep 12, 2010 6:34 am

Yves,

http://www.sirweb.org/news/newsPDF/SIR_ ... t_JVIR.pdf

Please pay attention to more than the MS Societies........
Cat (Catherine Somerville on FB)
MegansMom
My 35 yo daughter is newly dx 8/19/10 (had 12 symptoms)
Dx with Type A CCSVI- 1 IJV & double "candy wrapper" appearance of her Azygos
Venoplasty done Sept 21, 2010
Doing extremely well-
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Postby Donnchadh » Sun Sep 12, 2010 6:49 am

The entire tone of his letter sounds rather patronizing to me....

Donnchadh
Kitty says, "Take that, you stenosis!"

Got MS?.....Get Liberated!
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Postby L » Mon Sep 13, 2010 2:22 pm

Oh excellent, great to know that they will continue informing us on up-to-the-minute information. What would we do without those MS societies??
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