MS patients doing their own science

Scores, even hundreds of people with multiple sclerosis have in the last half-year or so undergone a procedure many hope will cure or at least improve their disease symptoms. And with each passing week, more are travelling abroad to have the untested therapy, which most cannot get in North America.

Dr. Paolo Zamboni  speaks about the research he has done at the Neurologist Seminar in Toronto on April 14

Dr. Paolo Zamboni speaks about the research he has done at the Neurologist Seminar in Toronto on April 14

TORONTO — Scores, even hundreds of people with multiple sclerosis have in the last half-year or so undergone a procedure many hope will cure or at least improve their disease symptoms. And with each passing week, more are travelling abroad to have the untested therapy, which most cannot get in North America.

But instead of results of their treatments showing up in the pages of scientific journals, they are appearing in YouTube videos and website testimonials. It’s as if there were a large, informal experiment underway. But it’s one that isn’t likely to persuade scientific skeptics that the therapy is useful in treating MS.

The liberation treatment, as it is called, is based on an unproven theory that blocked neck and spinal cord veins are to blame for MS and that opening up those blockages gives MS patients back some of the ability to function that the disease has stolen from them.

The condition has been given the name chronic cerebrospinal venous insufficiency — CCSVI. Clinics in Poland, Bulgaria and India are opening the blockages for patients who can afford to travel to them and are healthy enough to do so.

But just how much scientific followup is being conducted on treated patients is unclear. Patients themselves seem to be amassing the evidence of successes and failures — and there have been both — on the electronic bulletin boards of websites like This Is MS.

“If CCSVI turns out to be gospel truth and it actually helps people then it’s terrific for the patients that are getting the procedure and getting benefit from it. But it’s doing nothing to advance the science — which is really what needs to happen,” says Marc Stecker, who has MS and who writes about life with the disease on the blog Wheelchair Kamikaze.

Stecker thinks CCSVI may be part of what is going on with MS. And he would like to see the scientific community conduct treatment studies now to capture the type of evidence that isn’t being methodically gathered on patients who are getting treated outside of North America and outside of clinic trials.

But many in the scientific community insist it’s too soon for that. At this point, they say, it’s not even clear that the venous blockages — first identified by Italian doctor Paolo Zamboni — are abnormal, let alone whether they are involved in the MS disease process and can be treated in a way that will benefit patients over the long term.

Such basic questions need to be answered before clinical trials designed to see how best to treat the problem can start, they say.

“We don’t know the normal anatomy of the venous system…. What does a normal venous system normally look like?” notes Dr. Paul Hebert, a critical care physician and editor-in-chief of the Canadian Medical Association Journal.

“How much stenosis (blockage) is normal? Most of us probably have elements of this.”

Hebert is worried patients will die while the world looks for answers. Though treatment advocates believe it is relatively risk-free, Hebert says manipulating fragile veins can be dangerous.

“We normally only dilate arteries. Dilating veins is highly experimental and the structures are so weak that people will die,” he warns. “At some point it will happen because putting in vascular catheters is dangerous at the best of times.”

On Monday, Hebert’s journal joined the growing debate. In an editorial he co-wrote with another editor, Hebert argues that pressure from advocacy groups — fanned by positive media coverage — cannot be allowed to trump science, or in this case a lack of it.

“Good health policy decisions should not be based on hope and desperation,” the editorial insists.

Some patients believe there is already solid evidence — the positive stories they share with each other. Some talk of regaining lost function in their feet or their hands almost immediately after having a blocked vein opened, others about how the crushing weight of fatigue has lifted since the treatment.

Brian Light, a Toronto man with MS, argued during the Multiple Sclerosis Society of Canada’s recent board meeting that scientists should accept the stories told by returning patients as proof of the merit of the treatment.

But in the world of science, one person’s story is an anecdote, not evidence. And multiple anecdotes don’t constitute data.

“I call them the miracle videos,” Stecker, who lives in New York and who has had MS since 2003, says of some of the testimonials.

“You see before and the person is struggling to get by on like two canes and a crane. And then the day after they show them sauntering around Poland or wherever they’ve gone to have the procedure done.”

Stecker is among a group of patients not featured in the YouTube videos nor most of the news reports on the liberation procedure. He had the treatment done, but his doctor was not able to open all the blockages he found. Stecker has not experienced the benefits he’s seen others enjoy.

Stecker knows of other patients who also didn’t benefit. Some, like him, couldn’t have their blocked veins reopened, because of where blockages were located. Others had blockages opened but felt no benefit.

“A couple of us haven’t seen great results — it’s like the liberation losers’ league,” Stecker quips.

“I know personally through the blog and from people that I’ve met just in MS circles who have had it done (that) it seems to be that it’s not a small percentage that are not finding any benefit.”

Other patients report benefits that are fleeting, lasting merely months. Some people have travelled back to Europe to have the treatment redone a second time after their initial gains disappeared.

This is all useful information for people considering whether to undergo the procedure. But in the world of scientific evidence, it doesn’t make it over the bar. So health-care policy-makers under pressure to approve funding for the procedure here or in the U.S. still have nothing solid on which to base their decisions.

“That is one of the sad byproducts of this,” acknowledges Dr. Aaron Miller, head of the MS clinic at New York’s Mount Sinai Hospital and chief scientific adviser to the U.S. National MS Society.

Could these unmonitored treatment trips lead to conclusive evidence? Miller suspects not.

“One would be dependent on the people doing the procedures to provide useful information. And the validity of the information provided by the people doing these procedures is not necessarily the kind of information that we would like from a scientific perspective.”

Miller explains the procedures are mainly being done by interventional radiologists. They know about imaging vessels, but they may not know a lot about multiple sclerosis.

“So if they alone are going to provide the data, the data is of questionable validity. It would be comparable to my trying to produce credible information on some other subspecialty area that I don’t have any expertise in.”

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