MS Society of Canada commits $1 million for CCSVI clinical trial

My friend Shelley just sent me this press release:

Toronto, Ontario - September 16, 2010 – The Multiple Sclerosis Society of Canada board of directors unanimously approved a motion to reserve $1 million for a chronic cerebrospinal venous insufficiency (CCSVI) and MS pan-Canadian therapeutic clinical trial. The funding will be set aside so that an immediate infusion of funding will be available when such a trial is developed and approved.

“We want to hit the ground running when a therapeutic trial is warranted and approved,” says Yves Savoie, president and CEO of the MS Society. “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 MS Society of Canada hopes to work with the provinces and the federal government to secure all of the funding for a therapeutic clinical trial. At the recent health ministers’ meeting in Newfoundland, provinces and territories collectively stated that the issue of CCSVI is a top priority.

“We applaud the spirit of cooperation that the federal, provincial and territorial governments have shown in moving CCSVI to the forefront of country’s health agenda,” says Savoie. “The MS Society of Canada is ready to play a central role in preparing for and funding a scientifically rigorous pan-Canadian therapeutic clinical trial to test CCSVI.”

The MS Society has advocated for more research since the CCSVI theory became widely publicized in the fall of 2009.  Already, $2.4 million has been committed by the MS Society of Canada and the National MS Society (USA) to support seven research projects focusing on CCSVI and its relationship to MS.

Earlier this summer, the Federal Minister of Health accepted the Canadian Institutes of Health Research’s recommendation to create an expert scientific working group to monitor the results of the studies already underway. The experts 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 will be rigorously designed and successfully implemented,” concludes Savoie.  “We will continue to expedite the research process so that the treatment potential of CCSVI as it relates to MS can be understood as quickly as possible. “

 Then she asked what I thought and my advice for her as she goes into the MS Society of Canada's CCSVI Working Group meeting in Toronto this coming Monday.  My response was:

Well, it is (or could be) good news, Shelley… though we have to make sure that the research leading up to it is properly done… and that’s the part I’m not too sure of.  You know, in preparation for your meeting, if you have time you should do a little research and/or talk to Joan Beal to find out what are considered to be the shortcomings of the 2.4 million that was announced previously… maybe even put up a public message on Joan’s CCSVI facebook page and ask people for their quick thoughts (after explaining what you are doing).  If we had your working group saying that the research previously announced is flawed or inadequate, that would put a lot of pressure on the MSSC to do the right thing.

Do any of my other readers have thoughts, information or advice for Shelley?