Saturday, January 23, 2010

Cure vs. Hype - Is new MS research the real thing, or a media-driven frenzy? - National Post

For long-suffering multiple sclerosis patients, it seemed like a miracle: a relatively simple new explanation for what causes the often-crippling disease, and an equally straightforward fix.

Indeed, glowingly positive Canadian media accounts of work by Italy's Dr. Paolo Zamboni, who says the disease can be treated by unblocking veins from the brain, have triggered a sensation across the MS world -- and raised questions about how journalists and scientists portray medical research to the public.

Clinics throughout Canada and the United States have been deluged with calls and emails from patients eager to learn more or demanding immediate treatment with the new technique, often bringing the offices' regular work to a halt, physicians say.

Some doctors report that patients have gone off their medication, with potentially long-term negative implications. Others have talked of taking out loans or even selling their houses to fund the experimental therapy. Almost overnight, the MS Society directed hundreds of thousands of dollars in funding to study of the new concept.

Meanwhile, neurologists trying to explain the limitations of Dr. Zamboni's findings have faced sometimes angry recriminations from patients desperate for a cure.

"Many of the callers were very abusive, right from the start," said Dr. Luanne Metz, director of the Foothills Hospital MS clinic in Calgary. "Nasty to the nurses, accusing us of withholding treatment or playing Big Brother and not letting people have what they want, and arguing and arguing and arguing."

MS specialists blame the over-heated response in large part on that CTV documentary and an accompanying newspaper report, calling the stories one-sided depictions of preliminary, unproven research, including the treatment Dr. Zamboni evocatively terms the "Liberation" procedure.

At best, his work represents a promising new way of looking at MS that requires much more validation and testing before it can be widely applied, experts say. At worst, the more rigorous investigation now getting underway will show it to be a scientific dead end.

Most MS neurologists interviewed recently said they welcome the expanded research into Dr. Zamboni's theory, if only to settle the controversy; others lament what they consider a media-driven distraction. "There have been reverberations across the world as a result of that media story," said Dr. Mark Freedman, a neurologist at Ottawa Hospital and a top MS researcher. "I think there are going to be millions of dollars spent now to follow a hoax.... If I thought for one instant there was substance to this, I'd be all over it. But there really is very, very vague backing for the whole theory."

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