Terence Corcoran: Just a media sensation,
On Nov. 21, 2009, the cTV television network’s W5 program launched one of the most disgraceful episodes in canadian health journalism. The cTV W5 promotional material described a documentary called “The Liberation Treatment.” It promised a radical new theory of what causes Multiple Sclerosis and “discovers a novel way to treat the symptoms.” On the same day, TV reporter on the story — Avis Favaro — co-authored a feature with Andre Picard, The Globe and Mail’s public health reporter. “A cure In Sight,” was the major headline on the front page of The Globe’s weekend edition.
The theory was that MS could be caused by blocked veins in the neck. Known as ccSVI—chronic cerebrospinal venous insufficiency — the idea caught fire immediately. The cTV report showed dr. Paulo Zamboni, an Italian vascular surgeon, at his clinic explaining his theories and how MS might be curable. In the global sensation that followed, MS sufferers demanded the vein-opening surgery which dr. Zamboni said had completely relieved his wife’s MS symptoms. “When dr. Zamboni performed a simple operation to unclog veins and get blood flowing normally again, many of the symptoms of MS disappeared,” The Globe reported.
Faced with mass public pressure and global publicity, governments and MS socieites responded. Tens if not hundreds of millions of MS research dollars were diverted into probing a theory that most MS experts believed to be implausible. Now, four years later, that research has run its course and landed in a dead end. Study after study has failed to support the theories, with the latest released this week in The Lancet.
As the National Post’s Tom blackwell reports today, a new study — financed in part by the MS Society of canada — finds that there are no unusual vein blockages in MS sufferers. A commentary by two european medical scientists bluntly said the new study is “one that sounds the death knell for the hypothesis.”
In canada, dr. Paul O’connor, director of the MS clinic at St. Michael’s Hospital in Toronto, said in an interview that the whole ccSVI story is now over. “Patients don’t even ask about it anymore,” he said. Moreover, he said, “the theory doesn’t make sense,” and never did. Vein blockages that de-
A major media-created miracle cure for Multiple Sclerosis reaches dead end. Maybe media should fess up
prive the brain of blood may cause problems, but there is no known link to neurological problems such as MS.
but the four-year saga is not really a medical story, and it should not end as a medical story. It’s a media story of how a couple of journalists hyped a speculative and improbable theory into a plausible cure for a disease that has no known cure.
The original W5 report and The Globe and Mail story are filled with suggestive promise, evidence of miracle-like relief from symptoms, and promotional elements that should today embarrass both institutions and reporters. On W5, Ms. Favaro urged her viewers to contact their MS societies and put pressure on clinics to provide funding. Viewers, said cTV, should “let the MS Society know this is something they want pursued.”
That the media are responsible for what has turned into a global healthcare fiasco is beyond question. A recent paper published by bioMed central highlights the media-led frenzy that surrounded the Zamboni theory. Titled “Media, politics and science policy: MS and evidence from the ccSVI Trenches,” the paper attempts to explain what happened in the four years since the initial 2009 reports.
One of the authors of the bioMed paper is Andre Picard, The Globe health reporter. Mr. Picard goes to great lengths to dodge any responsibility for sensational positioning or overreach in reporting on the ccSVI theories. He admits that the “initial story about ccSVI was powerful and enthusiastic. but the story also cautioned that ‘ evidence is too scant and speculative to start rewriting medical text books.” It also warned that “MS sufferers should not rush off to get the surgery.”
True enough, but that was hardly the tone of the reports, which buried the cautionary fine print under headlines such as “researcher’s labour of love leads to MS breakthrough.” Not much introspection here. In fact, Mr. Picard lifts the story off his shoulders and drops into the hands of “the blogosphere” and social media.
Writes Mr. Picard: “Where ccSVI really took off was in the blogosphere. There, the provisos evaporated and the ‘liberation’ treatment was billed as a miracle cure.” Well, wait a second. It was The Globe headline that hailed “a cure in sight” and actually had Mrs. Zamboni walking around miraculously after having her veins opened.
A major and wasteful wrong was perpetrated with ccSVI, one in which science reporters ignored criticisms, accepted theories without much or no evidence, and then let the story fly for days, months and years.
It was, as I have written before (See National Post, Jan. 23, 2010), a case of irresponsible “hope mongering” by science reporters at cTV, The Globe and elsewhere. They played to the audience, fed off the ignorance of viewers and even MS sufferers, evaded the criticisms of medical experts, implied that miracles were possible. As dr. O’connor said in an interview Tuesday, “the media created this.” Now the media should fess up, and maybe begin to clean up a science act that has long been a disgrace, misleading readers and viewers daily with false scares and false hopes.