The story
“A Controversial ‘Cure’ for MS”
http://www.nytimes.com/2012/10/28/magazine/a-controversial-cure-for-multiple-sclerosis.html
by Paul Tullis
The New York Times Magazine, October 26, 2012
The pitch
WHEN SCIENCE MET FACEBOOK
A dangerous and unproven M.S. treatment has patients excited and researchers enraged.
New Yorker Adam Gottschalk, 41, has had multiple sclerosis for 12 years. In early 2009, he learned through Facebook of a condition called Chronic Cerebrospinal Venous Insufficiency, or CCSVI. It was first described the year before by an Italian vascular surgeon named Paolo Zamboni, whose wife had been diagnosed with MS. Zamboni theorized that the disease was caused by constriction of veins draining the central nervous system—a radical notion which no MS researcher, in 140 years of research, had thought worth exploring. Zamboni prescribed balloon angioplasty and stenting as treatments. Thousands of patients have since paid up to $14,000 each (no health insurance will cover the procedures), traveling across the country and around the world, to undergo surgery. Many report positive results; in the MS community it’s become known as “the liberation treatment.”
The trouble is, none of this is supported by research. Zamboni’s studies were unblinded, without a control group, and published in the neurological journal you submit to when no one else will publish you. Much worse, several patients in the US have died while having a stent inserted for CCSVI.
Adam Gottschalk was undeterred. In July, he flew to California and paid $11,000 to treat his supposed CCSVI.
Adam’s brother is Christopher Gottchalk, MD. He was doing brain-imaging research at Yale in 1999, when Adam’s diagnosis inspired him to begin pursuing MS research. Soon he was leading Yale’s work on the disease.
Dr. Gottschalk thinks his brother made a mistake to rely on anecdotal evidence and hype in deciding to undergo a risky, unproven treatment, and that Zamboni is a charlatan selling false hope to people like Adam. “It’s one of the saddest and most outrageous stories of scientific
misconduct,” he says. “It’s a gross exaggeration of preliminary findings that has snowballed into this worldwide, sensationalistic enthusiasm for something for which there’s not a shred of evidence that it works.”
Zamboni violated a rule among medical researchers by promoting his purported discovery in the press and on television, despite the absence of good evidence. News quickly spread through social media and online networks of MS patients. People undergoing Zamboni’s recommended procedure reported immediate, positive results, which fanned the flames of excitement. The result, Chris Gottschalk says, has been “this whirlwind of enthusiasm, particularly among young, intelligent, web-savvy people all desperate for a cure.”
Dr. Gottschalk attributes patients’ positive reports following the surgery to the placebo effect, and points out that in many cases, symptoms return after a few months. Zamboni is not a researcher, and his results have not been reproduced. He’s seeking a patent for an ultrasound process to locate CCSVI, so he has a financial incentive, and with his wife having the disease there’s the potential for a powerful observer bias.
There have been previous instances of internet- and media-fueled hype over medical treatments—bee-sting therapy, aloe infusions, ibogaine, weird diets—and the web has enabled self-diagnosis, to varying degrees of accuracy, to a degree never before possible. But the excitement and controversy over CCSVI may be the most extreme instance of an unproven (if not entirely bogus), expensive, invasive, and potentially deadly medical treatment becoming popularized and legitimized through the internet and social media we’ve seen yet. (A couple of experts I’ve spoken to agree.)
The controversy is boiling over in the medical community, at the MS Society, and in social media. Doctors are caught between their patients and their better natures in deciding whether to advocate for insurance carriers to cover surgery for CCSVI. Pressure to find a cure at the Society, and to support any line of inquiry that holds such promise, is huge. People writing in chat rooms of disappointing results following CCSVI surgery get flamed and even threatened for dissing Zamboni, his diagnosis, or his treatment.
I’d like to write a feature exploring the CCSVI controversy as a new and significant instance of internet-fueled misinformation regarding medical science with fatal results. I’ll tell the story through the Gottschalk brothers’ disagreement over CCSVI. Zamboni may the well-intentioned villain of the piece, whose judgment has been clouded by the ardent hope for his wife and potential for riches. Medical imaging companies and surgery centers profiting from Zamboni’s ultrasound diagnosis and treatments are an important “b” story, occurring in a context of no nationally-coordinated policy on health technology assessment, and of physicians irresponsibly adopting all sorts of unproven devices and procedures (often with a profit motive).
Adam Gottschalk has no regrets. The first night, he could sleep better. The next morning, his gait was stronger and smoother. His extreme sensitivity to heat has disappeared. “What can I say to him,” says his brother, “other than ‘I’m happy to hear you’re feeling better’? But then, our dad has been giving me reports, and last week Adam stepped out of the car without his cane and fell flat on his face.”
Please let me know your thoughts as soon as possible.
Thanks, Paul
