Winnipeg Free Press - PRINT EDITION

Advocates shut out of MS board

Debate over treatment divisive

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TORONTO -- Multiple sclerosis patients and advocates were thwarted in a bid to win two seats on the MS Society of Canada's board on Saturday, positions they sought in order to push for immediate access to an unproven treatment not available in Canada.

Linda Molyneux, whose 22-year-old son has MS, and Brock Winterton, whose wife has the disease, failed to secure enough votes to unseat two of the five board nominees on a slate proposed by the society's governance committee.

Though their nominees prevailed in the election, the society's executive and professional staff took a verbal pounding. Member after member denounced them for failing to use the society's clout to demand immediate access to treatment in Canada for a condition called CCSVI -- short for chronic celebrospinal venous insufficiency.

"You're not meeting the Number 1 need of your constituents," one angry society member said in a heated discussion that stretched what is normally a 30-minute meeting to nearly five times that.

"It has become quite clear to me the MS societies have lost touch with their membership," Molyneux said when she appealed for votes.

Patients feel the single greatest impediment that stands between them and this treatment is the MS society, she said.

At issue is the unhappy confluence of a new theory about what causes MS, an untested therapy, a disease advocacy group that feels it must be guided by scientific evidence and a sizable membership that is unwilling to wait for science to prove something they already believe to be true.

"This house is probably divided and we may not reconcile it today," MS Society of Canada president Yves Savoie acknowledged.

The society reiterated it cannot advocate for treatment for a condition -- CCSVI -- that hasn't yet been proven to be involved with MS, let alone shown to be the cause of, not a side-effect of the condition.

The theory is the brainchild of Italy's Dr. Paulo Zamboni, who has linked blocked neck veins with MS. He contends a build up of iron in the brain due to insufficient blood drainage triggers the disease. The longstanding belief is that MS is an autoimmune disease.

-- The Canadian Press

Republished from the Winnipeg Free Press print edition June 13, 2010 A12

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