The YouTube Cure: How Social Media Shapes Medical Practice

Popular demand for an unproved surgical treatment for multiple sclerosis shows the growing power of social media to shape medical practice—for good and ill

Furthermore, the ultimate cause of the disease remains obscure, which makes it hard to gauge the appropriateness of an intervention. Everyone agrees that MS destroys the fatty myelin sheath that enwraps many nerve fibers. Stripped of their insulation, the wires of the nervous system lose their ability to transmit the electrical signals needed for movement, sensation and vision. Most researchers assume some kind of autoimmune response, in which a person’s own defense system attacks rather than ignores the body’s own tissues, is at work.

Given that current MS treatments are a far cry from a cure and do not work for everyone, some people with MS feel there is no harm in trying something that might improve their quality of life. The answer, of course, is that it could also make their quality of life much, much worse. Any surgery carries the risk of infection, and the procedure itself can actually damage the blood vessels, making them more vulnerable to clots and aneurysms.

Without more rigorous clinical trials, it is almost impossible to weigh accurately the potential costs and benefits. The operation to straighten out and puff up crooked and collapsed veins, called venoplasty, is almost identical to cardiac angioplasty—a common treatment for diseased coronary arteries. (Side effects for both include blood clots, infections and severe internal bleeding.) After piercing through a vein in the pelvis, a spaghetti-size catheter is threaded up through a vein near the spine and into the neck, where a balloon on the catheter’s tip is inflated to pop the neck vein back to its normal shape—just like squatting in jeans that have shrunk in the wash stretches them, Simon explains.

But veins, which are more pliable than arteries, often regain their tortuous shape within months after venoplasty, requiring multiple procedures. One MS patient in the U.S. reportedly died from a brain hemorrhage while recovering, and another needed emergency surgery after a stent implanted to permanently straighten a vein dislodged and migrated to the heart.

Ready for Testing
One thing in favor of Zamboni’s approach is it has a reasonable scientific rationale, which not all potential therapies touted on the Internet have. A close look at the characteristic plaques of scar tissue that lend the disease its name shows that they typically cluster around blood vessels. And that, Zamboni says, is key. Veins are flexible and can get twisted, slowing the rate of blood flow and potentially leaving waste and compounds such as iron to accumulate in the brain. Isn’t it possible, he wonders, the buildup triggers an inflammatory response? And if the inflammation lasted long enough, it could eventually end up targeting the myelin wrapping of the nerves. A similar mechanism had been linked to myelopathies, degenerative conditions of the spinal cord, which bear a pathological semblance to MS.

That is a lot of “if’s.” But some physicians consider Zamboni’s hypothesis and treatment plausible enough to test. And the National MS Society and the Multiple Sclerosis Society of Canada have pledged $2.4 million over the next two years to examine the role that problems with venous circulation might play in multiple sclerosis. “There is little doubt that the intense interest in [venoplasty for MS] played a role in the decisions by the National MS Society and the Canadian MS Society to fund further research,” Miller says. Still, it is just too soon, he believes, to offer the procedure unless it is a part of a clinical trial.

A lesson from this episode, Miller says, is that it is important for neurologists and other physicians to be aware of what patients are seeing and reading online. “We can’t bury ourselves in an ivory tower and function as though [social-media sites] don’t exist,” he notes. “What our patients are thinking, we need to address. We have to be aware of it and be prepared to discuss it with them logically.” Miller says his patients almost invariably have been able to engage with him. After he explains the lack of certainty about venoplasty for MS, he observes, they usually agree with his advice to wait. Just how long they will continue to do so, however, may depend a lot on what social media push next.

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