Canadians' extraordinary support for an unproven "liberation" treatment for multiple sclerosis has led to a call for the country's research community to get with social media.

More than 500 Facebook groups, pages and events emerged in less than two years to promote the controversial MS treatment - which is not supported by MS doctors or the Multiple Sclerosis Society of Canada - says a report to be published Thursday in the journal Nature.

"What is fascinating here is the extraordinary mobilizing power of the media and the Internet," says the report by Roger Chafe, director of pediatric research at Memorial University in Newfoundland, and his colleagues at the University of Toronto and St. Michael's Hospital in Toronto.

"The case indicates the unprecedented pressures that politicians and funders worldwide can now face to alter research priorities even in the absence of credible scientific evidence. In this new social-media environment, research-ers and clinicians need to engage more actively with the public to articulate the science validating, or debunking, novel treatments - and to ensure that patients' concerns and priorities are heard."

Liberation treatment was developed by Italian vascular surgeon Dr. Paolo Zamboni, who hypothesizes that MS can be caused by blocked veins draining the brain and spinal cord, a "radical departure" from the prevailing view that MS is mainly an autoimmune disease, says the report. Zamboni's controversial treatment involves unblocking the veins.

The report says Zamboni's hypothesis has received little attention in other countries, but in a "seemingly unique" situation in Canada it has garnered a huge amount of media and Internet attention.

The Globe and Mail and the CTV news program W5 featured stories in 2009 about patients experiencing dramatic improvements after vein opening treatment for what Zamboni calls chronic cerebrospinal venous insufficiency (CCSVI). W5 described it as a "revolutionary" treatment that "could free MS patients from a lifetime of suffering." Canadian media reports about Zamboni and the liberation procedure have appeared almost weekly, dwarfing coverage in other countries, Chafe and his colleagues say.

The Multiple Sclerosis Society of Canada, clinicians and researchers didn't advocate the treatment, but hundreds of Canadian patients and their supporters turned to the Internet and social media to share information and testimonials about the benefits of the therapy and to attack the credibility of its critics.

"Some have even accused the MS society and MS physicians of being swayed by conflicts of interest as 'when CCSVI is introduced, the number of MS patients will drop,' " says the report in Nature.

The attention and controversy has fuelled a heated national debate over whether the health care system should pay for the vein-opening procedure and fund a clinical trial.

Liberal Leader Michael Ignatieff weighed into the debate last year, saying he would support clinical trials. Meanwhile, hundreds of Canadian patients are travelling out of the country, at their own expense, for the treatment at private clinics. Severe complications are rare, but there are reports that at least two patients have died after undergoing the vein-opening treatment known as a venoplasty.

Chafe and his collages say "a clear lesson" is that the traditional approaches of communicating scientific findings through reports, briefing notes, press releases and news conferences are insufficient.

"When patient groups are using social media to advocate and mobilize, scientists must use similarly effective tools to communicate," they say.

"Scientists and research funders also need to avoid adopting an 'us versus them' mentality," they say, pointing to "new models" that can bring together patients and clinicians to identify research priorities.

Chafe and his colleagues say "in today's era of 'Facebook equipoise,' it may make sense in rare cases to conduct a clinical trial before the desired weight of scientific evidence accumulates; for instance, if thousands of patients are exposing themselves to risks and costs of unevaluated medical procedures."

The Multiple Sclerosis Society of Canada and the U.S. National Multiple Sclerosis Society are now funding studies to evaluate the association between CCSVI and MS.

"If these studies consistently show no association, this may be enough to convince most people with MS that venoplasty is not worth trying," says the report. "If the results are delayed, or are unconvincing to many patients, we believe that the benefits of a double-blinded randomized trial would outweigh the costs - including the diversion of resources from other priorities."

To prevent more and more public resources from being diverted to refute unproven medical claims, Chafe and his colleagues say "more effort needs to be devoted to improving the scientific literacy of the public, politicians and the media - and to engaging with a public that is no longer deferential to experts."