MS “liberation” therapy – not in Canada (eh)

The story so far:  An unpredictable disease in both course and symptoms, multiple sclerosis (MS) is a terrible diagnosis (and is more common in Canada than anywhere else – perhaps because we’re so far north and lack sun and Vitamin D half the year).  Some people can live for decades with only minor symptoms; others deteriorate with alarming speed. And nobody really knows why; our best hypothesis is that MS is an inflammatory autoimmune disease, one where the immune system turns on itself and destroys the myelin “sheaths” surrounding the various nerves in the body.

Although it was identified in the mid 19th century by the French physician and thinker Charcot, MS is a recent disease, probably because it is devilishly difficult to identify – essentially the diagnosis is made by ruling out everything else.  An MRI, that shows up the lesions that the myelin loss causes, is the ostensible gold standard of MS diagnosis but even that’s tricky because several other conditions cause similar lesions, e.g., Lyme Disease.

Unusually, for an autoimmune disease (which rarely get the same kind of air play as cancer and heart disease even though they’re terribly common), MS has been much in the news lately.

Apparently, a certain Dr. Zamboni, an Italian physician whose wife had MS, has hypothesized that a lack of blood flow to the brain could cause many MS symptoms (known by the unwieldy moniker ‘chronic cerebro-spinal venous insufficiency’ or CCSVI) and that clearing aforesaid blood via angioplasty (a common procedure in cardiac disease) could relieve many of the onerous symptoms. MS could even be said to be “cured” according to some proponents.

Well! The experts and researchers are miffed. This so-called “liberation” procedure has been roundly criticized and a panel of Canadian experts has refused to countenance a clinical trial, insisting something so untried is probably untrue.

Maybe it is. But a great many MS patients have not paid attention to the experts and are flying to various places like Costa Rica to have the procedure done, paying out-of-pocket because they so desperately want to feel better.

What I find fascinating is that the argument seems fixated on the notion of “cause”.If MS is caused by the destruction of the myelin, or so the narrative runs, then this venous insufficiency notion is incidental and getting rid of it, useless.

But what if these blocked veins are simply a side effect, as it were, of the inflammatory condition (if indeed that is what it is) we call MS? What if clearing such blockages relieves symptoms for patients for six months or a year or longer? Why shouldn’t it be offered as an option, at least for those MS patients whose veins are blocked?

We give dying cancer patients ridiculously expensive medications in the hope that they will live a few months more. We transplant multiple organs into small children knowing full well that the vast majority of them will not live very long. We provide heroic measures for people whose life expectancy is pretty damn short. So why can’t we at least consider providing a procedure for those MS patients who might benefit – closer to home and without bankrupting them, which was, after all, how Medicare was originally envisioned: a program to prevent Canadians from losing their all in the case of catastrophic illness.

It’s true that for now there’s only anecdotal evidence to support this procedure. But, umpteen clinical trials have shown the connection between high cholesterol and dying of heart disease is tenuous at best if not invisible, but we still insist people lower their lipids. Doubly so if they’ve already had a heart attack. There is little evidence that in people over 60 most cardiac surgeries have any benefit (pharmacotherapy works just as well), but we do them anyway.

But no, now with this treatment we’re gone all cautious and conservative and gosh-we-couldn’t. Venous insufficiency isn’t the cause of MS, trumpeted the expert panel, so the bottom line is that we shouldn’t do it. Heck, we shouldn’t even undertake a test of it.

So why get so fixated on cause – when the myelin hypothesis is still only that, a hypothesis. One that most people agree on, true, but simply because a lot of people think something is true doesn’t make it so.

Many patients insist the procedure has helped. So, are they all nuts? Deluded? Is it placebo? (Bearing in mind that ‘placebo’ means ‘to please’.) The placebo effect is, after all, a wondrous thing and people who have just spent a whole bunch of money flying to Costa Rica for surgery are predisposed to believing they haven’t wasted their time and money. Maybe they just needed a few weeks of rest in a nice hospital in an even nicer tropical paradise.

But the only way to know with a modicum of accuracy is to do a clinical trial: find about 100 MS patients who do have this blocked vein thing, give half of them the real surgery, the other half a sham surgery and see what happens.

In the interim, why not offer it as an option for symptom relief. That’s all most drugs are.

What’s the point of turning it into a battle of wills, an argument about who’s right about the cause of MS? Dr. Zamboni, as nearly as I can make out, is not claiming that his treatment is magic or truth, merely that it seems to help some people.

More later on classification systems and their essential role in medicine in a later post – for now, perhaps medicine and the medical establishment needs to remember that its role is not just about cure but care. Which is what MS MS patients need right now.