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Letter: Multiple sclerosis, sensationalism and the media

Liberation therapy has been debunked.

CBC reports that a new study at the University of British Columbia has produced a “definitive debunking” of a controversial procedure that surgically widens neck veins as a treatment for multiple sclerosis. I watched the report on “The National” recently. The reporter ended by saying, “The liberation therapy may be best remembered as a study of the effect of social media on science and medicine.”

Social media may have stoked the flames, but CBC has ignored mainstream media’s role in starting the fire. News agencies like the Globe and Mail and CTV need to step up and take responsibility for sparking a destructive chain reaction that for years has derailed critical progress in real MS research and put the lives of hundreds of Canadians at risk.

The Globe and Mail headline in November 2009 read, “Researcher’s labour of love leads to MS breakthrough.” It caught my attention. MS has touched my family and I know the disease first-hand. So, when CTV’s “W5” aired a full-length episode on what they dubbed “a medical discovery,” I was glued to my television. But as I watched, I began to get a sinking feeling.

Dr. Paolo Zamboni, a former vascular surgeon and professor in Italy, had developed a new therapy for MS in hopes of curing his wife. He hypothesized that MS was due to a buildup of iron in the brain as a result of blocked veins in the neck. As the details unfolded, my skepticism grew.

Zamboni was a vascular surgeon, not a neurologist, and had no previous experience in MS research. The study only included 65 people, all male, and it was not a double-blind, placebo-controlled clinical trial.

All the patients knew they were getting the treatment, all had blocked veins and all saw significant improvement — it was simply too good to be true.

MS can be a horrible disease. Disability is progressive, and in many cases can happen very quickly. If you have MS, time is a luxury that you don’t have. So when the social media frenzy started, I wasn’t surprised. Families, communities and social media groups started fundraising. Unscrupulous doctors sprung up abroad who were willing to perform any procedure as long as you had the cash.

Given the mounting pressure, governments responded and agreed to fund studies and clinical trials to investigate the controversial treatment.

Experienced MS doctors were unconvinced and when the MS Society of Canada decided not to support the liberation treatment, it started a backlash. But the MS Society was relying on good science and the advice of experts to protect patients.

All of this was triggered by a reckless media that sensationalized the story to sell papers and get ratings. There should have been an ethical and moral obligation to present a balanced, unbiased story. Instead the coverage depicted liberation treatment as a miracle cure.

Dr. Michael Rasminsky, a neurologist at McGill University, commented last week that, “anybody who knew anything about MS knew the idea was nonsense from get-go. Had there not been the fevered publicity, no one would have thought it was necessary to spend the millions of dollars to do all these studies, including the one that’s just coming out.”

The impact on the MS community in Canada cannot be ignored. It fractured relationships between doctors and patients and split MS associations down the middle. The head of the St. John’s chapter of the MS Society resigned over it in 2010. It diverted precious funding from real science and has set back research into MS by years. It put vulnerable MS sufferers at risk — two people died after travelling abroad for the treatment .

CTV and the Globe and Mail need to acknowledge their role in this debacle with the same fevered sensationalism that they used in 2009 when they hailed the liberation treatment as a miracle breakthrough. They owe it to readers and viewers who trust them to provide fair and balanced news. They owe it to researchers and medical professionals who strive for a cure. Most importantly, they owe it to the thousands of courageous Canadians who struggle and do battle every day against this terrible disease. They deserve better.

Trevor Sooley

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