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Controversial treatment creating bitterness in MS Society elections

Italian doctor Paolo Zamboni made world news with his experimental treatment for MS, which immediately prompted calls for studies.

Alessandro Vincenzi/Alessandro Vincenzi/The Globe and Mail

The Multiple Sclerosis Society's national board election next week is expected to become a battleground as members rally to shut out supporters of a controversial treatment.

An e-mail circulated on Friday urged MS Society supporters to sign up to become members, which will give them voting rights.

And the e-mail asks them to use those votes to maintain the balance of the current board, effectively closing out candidates who want resources increased for research into chronic cerebrospinal venous insufficiency, a new diagnosis that suggests MS could be caused by iron blockages in the veins.

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Based on this theory, Italian physician Paolo Zamboni has claimed some success with a procedure he developed known as the Liberation Treatment. Publicized in Canada last fall, it has given sufferers a ray of hope, and had them clamouring for the procedure that some people who tried it are saying has eliminated symptoms. It is not available in Canada but is approved some countries, including Bulgaria, Kuwait and Poland. Even proponents say the procedure has not been scientifically proven, and a clinical trial at the University of British Columbia is just gearing up.

The diagnosis and procedure have become divisive issues in the MS community, and Ontario board vice-chair Valerie Hussey fears they might overshadow other important ongoing research the MS Society is promoting.

"Anyone with a connection to MS hopes for a 'liberation' cure," she wrote in the widely circulated e-mail. "But is this really it?"

In an interview, the Toronto woman, who has a loved one with MS said she only hopes to maintain balance on the current board of 10 directors. New members who are staunch advocates of CCSVI might steer decision making in one direction.

"Because there's this sense of hope around CCSVI, my concern is that our very balanced approach to research not be diminished, not be altered."

But board candidate Brock Winterton, whose wife, Janet Heisey, has battled the disease, says it is necessary to have a strong voice in support of CCSVI and the Liberation treatment on the current board. Many MS sufferers would like to try this treatment, which includes an ultrasound or MRI and then an angioplasty which involves local anesthetic, whether it's as part of a clinical trial or not, he said.

He is running for a seat with Linda Molyneux, who he joins on the Blocked Veins MS Research Group which maintains that the MS Society isn't allocating nearly enough resources to the study of CCSVI.

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"We're not trying to take anything away from anybody else. We're not trying to diminish the research dollars that are going into stem cells and many other areas of research," he said. "We simply want to see the MS society take this seriously and provide the opportunity for MS sufferers to improve their quality of life."

In December, the MS Society announced it will include grants to study potential vascular aspects of the disease. The total grants are $100,000 over two years of study, and only part of that will look at CCSVI, said MS Society president and executive director Yves Savoie. The CCVSI competition results will be announced on June 14.

But the entire $100,000 would only cover about a tenth of the cost of the clinical trials starting up at UBC and 20 per cent of what's needed to run trials at McMaster University's St. Joseph Hospital, said Kate Bahen, managing director of Charity Intelligence, an organization that helps Canadians make educated charitable donations.

"The medical research are not funded and people who want these trials funded should donate directly to UBC faculty of medicine and St. Joseph's," she said. "You don't have to go through the middle guy."

Mr. Savoie says he's excited that there will be such vigorous debate at the upcoming Annual General Meeting in Toronto next Saturday where these votes will be cast (members can also vote by proxy).

"Our members, many of them who have MS, have mobilized, they've pressured governments and we have called for quick action," he said. "And what we're seeing is that debate's taking place everywhere - Question Period, letters to the minister… and now on the floor of our AGM. People who are passionate about this issue and their voices will be heard."

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In early May, Liberal MP Kirsty Duncan urged health minister Leona Aglukkaq to call a provincial meeting to discuss the controversial treatment and dole out $10 million for more study on the diagnosis.

About 55,000 to 75,000 Canadians are suffering from the debilitating disease.

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