Patients seeking treatment information are looking for it online: report
Roger Chafe, Memorial University’s director of pediatric research, says social media seem to be driving the debate on treatment for multiple sclerosis. — Photo by Danette Dooley/Special to The Telegram
Social networking sites highlighting the benefits of the controversial Zamboni procedure for multiple sclerosis have politicians and funding agencies feeling pressure to support clinical trials that researchers say have not been scientifically justified.
Facebook, Twitter, YouTube and similar sites that tout Dr. Paolo Zamboni’s “liberation treatment” have garnered a huge amount of media and Internet attention in Canada, says Roger Chafe, Memorial University’s director of pediatric research.
Chafe is the lead author of a recently published report in the journal Nature about the treatment.
Zamboni, an Italian vascular surgeon, says MS may be caused by blocked neck veins, a condition he calls chronic cerebrospinal venous insufficiency (CCSVI). He suggests the problem may be fixed by widening the veins through a procedure called venoplasty.
Chafe and his colleagues at the University of Toronto and St. Michael’s Hospital in Toronto call Zamboni’s theory “a radical departure from the prevailing view that the disease is mainly an autoimmune disorder.”
There is ongoing debate about whether publicly funded clinical trials should be conducted on the treatment of CCSVI and whether patients should have free access to venoplasty.
“This is despite the fact that virtually none of the country’s MS physicians and researchers, and not even the Multiple Sclerosis Society of Canada … have advocated for either,” the report in Nature says.
It notes that more than 500 Facebook groups, pages and events promoting vascular treatment for MS have emerged in Canada in less than two years.
Chafe says people who learn about the procedure through social media are not hearing about the potential limitations of the unproven treatment.
Yet hundreds of Canadians are travelling at their own expense to private clinics around the world to have the procedure.
The Nature article says that while severe adverse reports from the procedure are rare, at least two patients have died following treatment.
While scientists are leery, Chafe acknowledges that credibility should be given to patients who report good results.
“Lots of people may want to say it’s a placebo effect but that’s not really fair. ... Maybe there is a positive benefit for some patients,” he said.
In November 2009, CTV’s “W5” featured a story about Zamboni and CCSVI, describing venoplasty as “a revolutionary treatment for a most debilitating disease (that) could free MS patients from a lifetime of suffering.”
“The program was almost reporting miraculous benefits from this treatment,” Chafe said.
“No one on camera spoke against the procedure even though they’d interviewed people, neurologists, who were very doubtful of it.”
Chafe and his colleagues began searching leading newspapers in seven countries for more reports on the treatment.
Their search covered the period November 2009-January 2011.
They found more than 80 articles in Canadian papers, 16 in Italian papers and a total of six from newspapers in five other countries.
The Multiple Sclerosis Society of Canada and the Multiple Sclerosis Society in the United States are funding seven studies to evaluate the association between CCSVI and MS.
In this province, Chafe says, a registry of patients has been established to assess those who travel outside the country for venoplasty, both before they leave and when they return.
He hopes the Nature report about the influence of social media will get Canadian scientists considering whether they need to change the way they convey information.
“If patients are getting most of their information from the Internet and from Facebook groups and YouTube, researchers also have to be in that space,” he said.
“The best way of doing that is sometimes a bit difficult to determine.”