A new study argues that social media and the Internet are so influential that they’re setting national research priorities. The study, by a group of Canadian doctors, was published today in Nature.
Multiple sclerosis is a devastating illness that, experts widely agree, is an autoimmune disease. But in 2008, Italian surgeon Paolo Zamboni submitted that MS was not an autoimmune disease but rather a vascular disease. “Brain blockages” were the real culprit behind MS, he argued, and symptoms could be alleviated by something he called a “liberation procedure”–the physical, mechanical widening of veins in the brain, known more technically as venoplasty.
Globally, among experts, this thesis was met with the round rejection it evidently deserved. Except in one place: Canada. A pair of mainstream media misjudgments apparently launched the craze: The Globe and Mail penned an article in late 2009, and then CTV followed with a segment on the treatment. But after those missteps, the Internet took over. YouTube, Twitter, and Facebook have become a social echo chamber among patient-advocacy groups demanding access to the unproven treatment. There are over 500 Facebook pages (including groups and events) dedicated to promoting the Zamboni procedure. Half of all Canadians know of the theory, according to one poll; articles appear weekly; tens of thousands have joined the ranks of the procedure’s supporters on the web. A national debate rages on about whether publicly funded trials should be conducted and whether MS patients should have immediate, publicly funded access to venoplasty. All for an unproven treatment that has been rejected by the scientific community.
More on Why You Should Consult Your Doctor, Not Facebook, On Medical Issues
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Talking about CTV British Columbia – MS patients claim discrimination in treatment access – CTV News
Friends Rick Pereira and Martin Dimitov both suffer from MS. Every day, Pereira visits a Burnaby care home to help Dimitov.
Though both were diagnosed at the same time, Dimitov’s symptoms are so advanced, his vision is eroding daily. The former semi-professional soccer player can’t sort out his vitamins without assistance.
Many MS patients believe that a simple vascular procedure can ease and even eradicate the debilitating effects of MS.
Dimitov and Pereira both say that the so-called “liberation” or “zamboni” treatment is like pulling a drowning person out of the ocean.
“Because it treats the cause, it would definitely help. All the evidence is showing that everybody who has had this done has been helped in one way or another,” Pereira told CTV News.
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Talking about Liberals seek MS debate – The Globe and Mail
Toronto MP Kirsty Duncan is leading the charge, pressing Health Minister Leona Aglukkaq call a meeting of provincial health ministers to develop a plan that would allow all Canadians with MS to have access to the procedure. She also wants the federal government to provide $10-million to Multiple Sclerosis Society of Canada for research into a new hypothesis about the causes and treatment of MS.
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Talking about Protesters rally for access to MS treatment
OTTAWA — A fast, easy cure for multiple sclerosis has been found, but Canadian health officials won’t let MS victims have it, protesters said Wednesday on Parliament Hill.
About 200 people, many in wheelchairs, called on the federal government to get behind a new treatment they believe can cure the degenerative disease.
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Talking about Facebook | MAY 5 Rally VANCOUVER
For Vancouver and Vancouver Area
MAY 5TH at 11:00 AM – CCSVI RALLY
Vancouver City Hall 453 West 12th Avenue.
We are joining the rest of Canadian cities in quest of medical equality for patients with MS. Please bring your family and friends. We need your support.
(edited to not be in ALL CAPS)
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