Monthly Archives: November 2010

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.

Plus ca change …

Art maybe longa and vita brevis (to coin a phrase) – but it seems our memories are even shorter.

There’s a promotion for an upcoming movie I kept seeing on the Space channel – something called Airline or Skyline or some damn fool line ( I gather some giant flying machine runs amok, destroying everything in its path, all, no doubt, to stunning and deafening effect (at least for those of us with intact hearing). Unfortunately, all I can see are the fake-looking computer-generated effects that make me want to giggle, dramatic voiceover notwithstanding.

Can anyone take these things seriously? That last Indiana Jones movie, for instance. I watched it on an airplane and could not take the interminable chase scenes even semi seriously: lovely two-dimensional jungles as the three-dimensional Jeep carried away Cate Blanchett and the two guys.

More than anything it reminds me of those corny old movies with the painted backdrops of the Rocky Mountains – Nelson Eddy and Jeannette MacDonald singing “When I’m calling you-hoo-hoo-hoo-hoo-hoo-hooooo …”. Horses bobbing up and down. Or those ‘40’s and ‘50’s movies with cars speeding down some hillside where it’s obvious the car is stationary and there’s a film rolling in the background.  It did not remind me of Gene Kelly dancing with the cartoon characters because that was actually rather cool.

Don’t look at the backdrop .

I suspect most people don’t care because unlike me they enjoyed the Indiana Jones movie and will enjoy the Skyline one – especially if they watch it on their iPhone screen. But c’mon, who are we kidding?

Fake is fake, whether it’s generated by a cool, high tech gizmo or painted onto a piece of fabric by a guy who went to art school and can’t believe he ended up in Hollywood and not some Montmartre atelier. In the end, it’s goofy and tiresome and repetitious. Personally, I’m more impressed with that Bridgestone tire ad where they come to a crashing halt at the end of the pier because naturally their tires are so terrific. (I gather the director was so nervous that the car wouldn’t stop in time that he suspended a net in the water to catch the car – and the actors – in case it went flying into the bay.)

My curmudgeonly gripe today is that we just don’t realize it’s been done before. Except we forgot or don’t know. So this wide-eyed aren’t-we-all-so-clever-today thing is just so the day before yesterday.

So to speak.

It’s not just movies, it’s science and everything else. The so-called new neuroscience where we’ve realized the neuropolasticity of the brain. Genetics. All presented in the tones of a child who’s just learned to tie his or her own shoelaces for the first time and figures there’s an award in it. A Nobel prize even. (The parents would concur.)

One of my students practically spluttered a few weeks ago when I told her that actually epigenetics and the concept that the developmental process mitochondrial DNA undergoes is more important than the actual nature of the DNA itself isn’t new at all. In the thirties and forties it was called embryonic or, quite appropriately, developmental genetics.

In his 1926 book, The Theory of the Gene, T.H. Morgan pointed out that it’s important to keep apart the “phenomenon of heredity, that deals with the transmission of the hereditary units” and the issue of “embryonic development that takes place almost exclusively by changes in the cytoplasm”. (quoted in Evelyn Fox Keller: Refiguring Life; Columbia Univ. Press, NY, 1995)

Epigenetics in other words.

Whoever it was who said that we stand on the shoulders of giants knew whereof he spoke. Too bad we seem to have forgotten.