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The Internet-fueled demand for an experimental, unproved treatment for multiple sclerosis is the subject of a great story today in The New York Times.
Reporter Denise Grady examines the phenomenon: patients, armed with information pulled off a website, have formed, in essense, "a back alley" queue to get an experimental procedure which involves opening narrowed veins in the chest in order to restore blood drainage from the brain.
This so-called "liberation procedure," developed by an Italian vascular surgeon, is completely at odds with the conventional thinking that MS is a disease marked by inflammation, and triggered by a malfunctioning immune system.
Nevertheless, hundreds of patients, part of an online solidarity movement, want access to the questionable treatment:
The new theory has taken off on the Internet, inspiring hope among patients, interest from some researchers and scorn from others. Supporters consider it an outside-the-box idea that could transform the treatment of the disease. Critics call it an outlandish notion that will probably waste time and money, and may harm patients.
These critics warn that multiple sclerosis has unpredictable attacks and remissions that make it devilishly hard to know whether treatments are working — leaving patients vulnerable to purported “cures” that do not work.
The controversy has exposed the deep frustration of many people with this incurable, disabling disease, who feel that research has let them down. It is a case study in the power of the Internet to inform and unite angry patients—which may be a double-edged sword. Pressure from activists helped persuade the Multiple Sclerosis Society to pay for studies of Dr. Zamboni’s theory, but the Internet buzz has also created an avid market for a therapy that is still unproved.
“It’s eye-opening the way this group of patients has grabbed hold of the social-networking technology,” said Dr. Simon, an interventional radiologist at JFK Medical Center in Edison, N.J. “They’ve taken this to a level I’ve not seen in other patients. Patients used to read an article or two. Now, they’re actually seeing procedures on YouTube. Is this the future of medicine?”
This program aired on June 29, 2010. The audio for this program is not available.
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