Can social media be used to mobilize large groups on topics other than Justin Bieber and Charlie Sheen? Yes, it can. The Canadian medical community has been bombarded by exceptional social media support for a new multiple sclerosis treatment.
The treatment in question is a controversial multiple sclerosis procedure which is not currently supported by Canadian doctors or the Multiple Sclerosis Society of Canada. Called liberation treatment, it was developed by an Italian surgeon, Dor Paola Zamboni. His hypothesis is that M.S. can be caused by blocked veins that drain the brain and spinal cord. This is a significantly different (even “radical) view of the disease; the traditional understanding of M.S. contends that it is mainly an autoimmune disease. Liberation treatment involves unblocking the veins.
In 2009, a newspaper article in the Canadian Globe and Mail and a television program on Canadian station CTV featured stories about MS patients undergoing liberation treatment. The patients were, apparently, seeing dramatic improvements. These stories must have struck a particular chord with Canadians because while the treatment has seen some interest from other countries, it is nothing compared to the surge of interest in Canada.
Since 2009, more than 500 Facebook groups, pages, and events have popped up. This is, in turn, has put pressure on the medical community to consider clinical trials of the treatment, and the issue has become a controversial one. The Multiple Sclerosis Society of Canada and Canadian and Canadian researchers do not support the treatment, noting that recent research has not found a link between vein blockages and M.S. But, some are accusing the Canadian medical society of having a conflict of interest.
So, what’s the Canadian health industry to do? Ignore the swelling pressure from thousands of patients or do clinical trials and ignore the fact there is a lack of evidence supporting the treatment?
Roger Chafe, director of paediatric research at Memorial University notes that “ “What is fascinating here is the extraordinary mobilizing power of the media and the Internet [...]In this new social media environment, researchers 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.”
Chafe is correct. What is significant about this case is not just the treatment itself, but the power of social media to both mobilize and pressure formerly difficult to influence entities such as the medical community.
Through social networks, patients have found a voice, and by banning together, they have created a significant enough uproar to impact researchers and clinicians alike. This means that drug companies, governments, and researchers may now not only have to negotiate with each other to determine which trials should be conducted first, but also with the patients. On the one hand, it is disconcerting that average social media users– who are presumably less qualified than the health professionals – could impact the direction of research. On the other hand, it gives a voice to the people impacted most by research: the patients.