MS and the Facebook effect

Danette Dooley
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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.”

 

telegram@thetelegram.com danette@nl.rogers.com

Organizations: Multiple Sclerosis Society of Canada, University of Toronto, Hospital in Toronto

Geographic location: Canada, Michael, United States

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Recent comments

  • Susan
    May 21, 2011 - 12:20

    A new CCSVI clinic it is available in Bucharest, Doctors team from Bucharest are certified by DR.ZAMBONI in Ferrara and by Dr. Simka in Poland to perform the CCSVI treatment/procedures. The price of the treatment INCLUDING Travel Expenses(flight ticket,accomodation,transfers,­all exams,angioplasty) is 8200 USD for USA/CANADA patients and for europe patients 5100 Euro Incl. Travel expenses.

  • Katherine
    May 02, 2011 - 15:55

    MS patients have always exhibited vascular symptoms, and the vascular theory and research pre-date the autoimmune theory by many years. MS patients are routinely prescribed outrageously expensive medications that are minimally effective, and let's not forget they are treating something they don't yet know the cause of, and know little about despite the years of research and billions of dollars. It is time to revive the vascular theory and see what it will yield. I can't help but having more confidence in the scientific integrity of the researchers of years past, before billions were at stake.

  • Lori Batchelor
    May 02, 2011 - 13:02

    People with MS just want a chance at a better quality of life! When I was having pain in my ribs and thought it was the "MS Hug" I was referred for ultrasound and was found to have gallstones. This was treated with gallbladder removal and wasn't questioned even though I also have MS. Why can't people with MS be tested/treated for a recognized vascular condition that might be responsible for some of their symptoms? I have received angioplasty in the U.S. and for some reason the ballooning of my azygos (which was 50% blocked) and both of my jugulars (which were both 90% blocked) coincided with a marked improvement in my balance and my drop-foot. For the first time in 17 years, I can walk unassisted for several hundred metres, without falling. I was always told these were symptoms of my MS and there was no treatment but having restored my blood flow seems to have improved my quality of life. What's wrong with having this chance? Please have a look at my before/after videos: Walking before: http://www.youtube.com/watch?v=RUjoY0GEzFk&feature=feedu Lori walking after: http://www.youtube.com/user/lorimayb#p/a/u/0/rhEoCj7GcaA

  • GinR
    May 02, 2011 - 12:14

    If CCSVI is so different but still occurs in MS patients, why NOT treat their veins? Do people who have MS, who may also have CCSVI, NOT deserve to have free blood flow from their veins? Why does the relationship matter? If a non-MS patient went for vascular issues, it would be covered. Why should it matter if they also happen to have MS? My mom was stented in her LJ and RJ on 12/01/10 in Tampa, FL. With restored blood flow from the jugulars (her azygos was cleared of "webbing" as well), many of my mom's "supposed" MS symptoms have become minimal some disappearing altogether. Her left side drop foot was immediate from the recovery room bed. My mother has improved, which is more than we hoped for. My mom who prior, couldn't walk 20 feet without assistance prior to surgery. Walked the whole 2 miles at the CCSVI Walk-n-Roll charity walk. Unassisted. There are reasons WE believe in CCSVI. There is a reason that MS patients and patient advocates want more research into CCSVI is WE SEE RESULTS! Now is CCSVI the cure or cause, that is why we need more research. However, I think we can hypothesize that CCSVI and MS correlate somehow.

  • jade
    May 02, 2011 - 09:26

    I agree with Xanthippe. I have seen doctors who treat MSers like me and researchers speak honestly and openly about needing to be sure the treatment is not only safe, but proven scientifically in Facebook and other forms of social media like blogs and they have been attacked by angry CCSVI supporters. Recently, I saw this happen to Zivadinov in Facebook after he released his research. This is the same researcher who early on was a "god" to these same CCSVI supporters. These docs and researchers can get into social media, but really, to what end if people who don't want to listen won't listen.

  • Xanthippe
    May 02, 2011 - 09:10

    So what should researchers say or do when their results do not validate Zamboni's theory? I'm noticing that Zivadinov's most recent paper is being attacked on CSSVI pages on Facebook. I'm afraid the CCSVI movement will become like the anti-vaccine movement, taking pride in their denialism in science and attacking those who give evidence against their beliefs as being in the pockets of "Big Pharma". I want to know how we get the CCSVI activists to concede and stop playing doctor on Facebook, because there is evidence that CCSVI is NOT the cause of MS and is found even in healthy individuals and individuals with other neurological conditions with vastly different etiologies than MS.