Tuesday, August 31, 2010
CIHR makes recommendations on Canadian MS research priorities
While I disagree with the statement "there is overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS", (No evidence of a link? What happened to the Buffalo study and all of the other clinical evidence since then???), I see that the actual CIHR press release is not nearly as negative as the CBC made it out to be: http://www.cihr-irsc.gc.ca/e/42382.html. Take a deep breath and chill, folks... it's not good news, for sure, but the CBC story wasn't that clearly written and the setback isn't quite as bad as it first seemed. Still, that "overwhelming lack of evidence" statement seems pretty stupid.
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I most definitely need to take your advice and do some deep breathing exercises while attempting to chill because I think I can feel the steam coming out of my ears after reading this article!
ReplyDeleteI think the press release is far more dangerous than it appears, because it will influence all CCSVI-related activities in Canada. Here is a copy of an e-mail I just sent to CIHR, the MS Society, and my MP.
ReplyDeleteToday, the CIHR issued a statement that was quoted as follows:
"There was unanimous agreement from the scientific experts that it is premature to support pan-Canadian clinical trials on the proposed "Liberation Procedure," said Dr. Beaudet. "There is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS."
I have a few questions for these 'scientific experts', Dr. Beaudet, the leadership of CIHR and the other conference participants:
- If there is an overwhelming lack of evidence, how do you propose to get any, if you do not undertake trials of the procedure?
- Why, in the section entitled 'Is "venous insufficiency" linked to MS?' do you highlight the negative results of small trials in Europe, and downplay the significant correlation found by the BNAC study?
- What is the relevance of saying that "Venous angioplasty is rarely used because the incidence of re-stenosis is so high", if the procedure is used for other conditions (e.g. for patients with kidney disease who have experienced venous stenoses due to dialysis), and there is no other treatment available for MS? Why should its rarity have any effect on the decision? After all, brain surgery is relatively rare, and far more risky than venoplasty, but is still performed in the case of brain tumors.
- You further state: "In the opinion of the expert panel assembled by CIHR and the MS Society of Canada, there is currently no scientifically valid evidence in support of the existence of CCSVI in patients with MS, and there is currently no scientifically valid evidence to support the use of venous angioplasty in the treatment of patients with MS". Does this mean that you consider the work of BNAC to be scientifically invalid? And if you conduct no trials, how will you ever gather evidence to support or refute the use of venous angioplasty to treat MS?
- Have you forgotten the tenet of medical ethics that gives patients and their physicians the right to make their own decisions? How does this situation differ from the well-accepted approach of 'off-label' use of other procedures and medications?
- It's hardly comforting to read that the participants included "a" person living with MS. Did this individual represent the 55,000+ people living with MS in Canada, or did the representatives of the MS Society act as advocates? Were they included in the "unanimous" agreement? Were Dr. Zamboni or Dr. Zivadinov invited to this conference?
- Do you know so little about MS that you do not understand the devastating effect on lives, families and our society that months or years of delay may have?
To those of us living with MS, this entire conference looks like propaganda intended to offset the groundswell of public outcry, rather than a truly open discussion of the research, the reality of MS and the issues.
Shame on you.
I think the CIHR statement is far more dangerous than it appears, because it will influence all CCSVI-related activities in Canada.
ReplyDeleteI sent an e-mail to CIHR, the MS Society and my MP - here are some of my questions:
- If there is an overwhelming lack of evidence, how do you propose to get any, if you do not undertake trials of the procedure?
- Why, in the section entitled Is "venous insufficiency" linked to MS? do you highlight the negative results of small trials in Europe, and downplay the significant correlation found by the BNAC study?
- What is the relevance of saying that "Venous angioplasty is rarely used because the incidence of re-stenosis is so high", if the procedure is used for other conditions (e.g. for patients with kidney disease who have experienced venous stenoses due to dialysis), and there is no other treatment available for MS? Why should its rarity have any effect on the decision? After all, brain surgery is relatively rare, and far more risky than venoplasty, but is still performed in the case of brain tumors.
- Have you forgotten the tenet of medical ethics that gives patients and their physicians the right to make their own decisions? How does this situation differ from the well-accepted approach of 'off-label' use of other procedures and medications?
This entire conference looks like propaganda intended to offset the groundswell of public outcry, rather than a truly open discussion of the research, the reality of MS and the issues.
What if all Canadians who have had CCSVI testing and/or treatment overseas collectively gathered their medical reports and reported the medically supported evidence they had CCSVI. Why would this not be evidence that CCSVI occurs in people who have MS? It may not be a cure, but it has improved some "symptoms". Seems my neuro told me at the outset, "we cannot cure MS yet, but we can help with some of the symptoms." So, CCSVI is reported in MS patients and treatment relieves some symptoms (fatigue, brain fog, circulation, etc.). If I can get cosmetic surgery for unattractive leg veins, why can't I find (and even private pay)for CCSVI treatment in Canada? The world renowned vascular surgeon who did my CCSVI in Europe(and has at least as many papers published as these Canadian gate-keepers) certainly performed the testing and procedure at a very reasonable cost. It was the overseas travel that was most expensive. Something has got to be done to shake these power silos away from their lobby groups so they can serve Canadian MS patients again.
ReplyDelete"Clinical trials are the end point of a long, arduous and complicated process of scientific evidence generation, not the beginning." (Halifax Chronicle Herald article published Sept. 08/10 by Dr. Stan Kutcher- Sun Life Financial Chair in Adolescent Mental Health and director, WHO Collaborating Centre, IWK and Dalhousie University).
ReplyDeleteI have MS and will wait for clinical trials to be undertaken. The approporiate steps need to be taken before touting the CCSVI as a treatment/cure.
Those old enough will remember the tragic Thalidomide fiasco (NO clinical trials) that caused birth defects in the unborn. Had clinical trials been conducted, the drug would have never made it to market.
Let’s not make the same error regarding CCSVI.