Chronic cerebrospinal venous insufficiency (CCSVI or CCVI) is the name of a condition invented by an Italian doctor named Paolo Zamboni. He claims that it is the cause of multiple sclerosis. He also claims to have developed a procedure called "liberation treatment" or "liberation therapy" that will alleviate the symptoms of MS. It involves opening up some of the veins in a patient's neck in order to improve blood flow. He has been treating patients from all over the world for the past few years.
As you might have guessed, the treatment at his clinic is not free.
There has been enormous pressure on the Canadian and provincial governments to fund this treatment for MS patients, who otherwise have no hope of a cure. So far, most provinces have refused to pay for the treatment. In August 2010, CIHR announced that it would not fund research into something that does not exist [CIHR makes recommendations on Canadian MS research priorities].
Ottawa (August 31, 2010) – On Thursday, August 26, the Canadian Institutes of Health Research (CIHR), in collaboration with the MS Society of Canada, convened a meeting of leading North American experts in multiple sclerosis (MS) to identify research priorities for Canada in this area. Today, at a press conference in Ottawa, CIHR President Dr. Alain Beaudet announced the outcomes of the discussions and shared the recommendations he has made to the Honourable Leona Aglukkaq, Minister of Health.This is the right decision. Money is scarce and it would be criminal to devote any of it to quackery at the expense of legitimate scientific research.
"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."
But there's a catch.
At the same time CIHR made that announcement, it also announced the formation of a "working group" to examine the result of studies currently under way—studies funded, in large part, by the MS Society of Canada.
Last year The Conservative Health Minster (Leona Aglukkaq) announced that CIHR would fund an expensive clinical trial to see if liberation treatment works [Feds to fund clinical trial of controversial MS treatment in Canada].
- To establish a scientific expert working group made up of the principal investigators for the seven MS Society-sponsored studies (four from Canada and three from the US), scientific leadership from CIHR and the MS Societies, and a representative from the provinces and territories, to monitor and analyze preliminary and final results from these studies, as well as from related studies from around the world. The first meeting of this expert working group should take place in this calendar year.
- Based on the outcomes of these studies, the scientific expert working group should reach conclusions regarding (1) the association (or lack thereof) between impaired cerebral venous drainage and MS; and (2) a common standard for reliably diagnosing the condition using imaging or other techniques.
- Depending on these conclusions, the scientific expert working group should make recommendations on further studies including, if appropriate, a pan-Canadian interventional clinical trial.
Canada's Health Minister Leona Aglukkaq announced Wednesday that the federal government will fund a clinical trial for "liberation treatment," an experimental vein therapy for multiple sclerosis developed by an Italian doctor.Barry Rubin is the medical director of the Toronto General Hospital's cardiac centre and he was a member of the working group that made the recommendation to proceed with a clinical trial. He has just published an article in the Journal of the American College of Radiology. The title is The “Liberation Procedure” for Multiple Sclerosis: Sacrificing Science at the Altar of Consumer Demand." (I can't access the article.) According to the press release [Canadian researcher likens controversial MS treatment to faith healing]
The MS Society of Canada, a co-funding partner of the project, said it's "thrilled" by the announcement that may bring "definitive answers" about the controversial treatment developed by Dr. Paolo Zamboni.
The clinical trial for Chronic Cerebrospinal Venous Insufficiency (CCSVI) in Canadians with multiple sclerosis seeks to determine the safety of venous angioplasty, also known as "liberation treatment" which requires the opening of blocked veins, the Canadian Institutes for Health Research said in a release about the announcement.
A member of an expert group advising the Canadian Institutes of Health Research (CIHR) about the effectiveness of a controversial treatment for multiple sclerosis has likened it to faith healing.So, it seems as though at least one member of the working group recognized that this clinical trail is a waste of money. Money that could be spent on real scientific research. This is truly a case of "sacrificing science at the altar of consumer demand."
Dr. Barry Rubin, medical director of the Toronto General Hospital's cardiac centre, and three American co-authors draw the parallel in an article entitled "The 'Liberation Procedure' for Multiple Sclerosis: Sacrificing Science at the Altar of Consumer Demand," in the current issue of the Journal of the American College of Radiology.
Rubin sits on the CIHR's Scientific Expert Working Group, a 23-member international panel created by CIHR in 2010 to monitor and analyse research into the link between MS and chronic cerebrospinal venous insufficiency (CCSVI), a term coined by Italian doctor Paolo Zamboni to describe blockages in the veins of the neck and spine.
Zamboni's so-called "liberation treatment" involves opening the blocked veins by inserting a balloon, a procedure known as venous angioplasty.
Health Minister Leona Aglukkaq announced last month a team of researchers has been selected to conduct a clinical trial into CCSVI in about 100 MS patients.
But the article by Rubin and his three co-authors says funding trials of a procedure "that has minimal basis in rational, empirical knowledge seems questionable." It cites two cases of Canadian MS patients who underwent venous angioplasty.
One died while the other suffered a serious stroke.
The article places Zamboni's therapy in the same category as "treatment of breast cancer with laser photodynamics, Laetrile for cancer and other unproven therapeutics found in the retail sphere. And, it asks, "When is healing 'faith healing?'"