On Tuesday, the Globe‘s Patrick White discussed Saskatchewan premier Brad Wall’s announcement that he wants to set aside cash for trials of Paolo Zamboni’s “liberation therapy” for multiple sclerosis. White says that Wall’s audible “serve[s] up an uncomfortable nudge to political leaders elsewhere who have largely avoided the emotionally charged debate” over the Zamboni technique.
This is factually true. But the wording seems hard on our “political leaders”—most of whom have, and I’m just guessing here, avoided the “emotionally charged debate” because the debate is not really their business, but that of deputy ministers, health bureaucrats, foundations, and research establishments. To be sure, there is a place for improvisational, rapid-response policymaking at the top of the pyramid of state where justifiable public demand for it exists. But “the squeaky wheel gets the grease” is a dangerous maxim, full of moral hazard, and hardly a fit foundation for a system of funding scientific research. (Surely no level of hell can possibly be hot enough for opposition politicians who abuse a scientific controversy in order to establish their emotional bona fides.)
Wall’s moment of inspiration will have the effect, intended or not, of encouraging sufferers of painful, intractable illnesses like MS to besiege the Saskatchewan legislature directly with appeals for the latest internet nostrum-of-the-week. Nobody’s good intentions will stem that tide: let thy voyage unto Regina begin now, O ye with lupus, ye sore afflicted with fibromyalgia! Having conjured a research project into existence in the interests of anecdote-armed Victim A, on what grounds will Wall and his successors be able to turn away B, and C, and D?
It bothers me that Wall talks of the “hope” offered to MS patients by the Zamboni theory as if it were a virtue in itself; it seems to me that this is precisely what remains to be decided—whether the hope consciously cultivated by a handful of instant medical celebrities is fully justified, or whether it is an irresponsible, tragic delusion propagated for personal gain. It could well be either: the story of Barry Marshall reminds us that weird, unanimously heckled theories sometimes turn out to be true. The patients themselves can hardly help experiencing hope, though I rather admire the stoicism, evidently informed by experience, of one CBC.ca commenter (indeed, this may be the first cogent utterance ever made by any CBC.ca commenter):
This is the third “cure” I have seen for MS in my lifetime and it wont be long before it too is relegated to the scrap heap to lay beside the hyperbaric oxygen chamber and the snake farm. I still hope to see the one that works but this isn’t it.
How could anyone be so pessimistic? Well, even leaving aside the history of MS quackery and hype, there is no shortage of circumstantial reasons. The “liberation therapy” tag is an obvious mark of heavy con-artist and/or halfwit involvement in the publicity effort. Why not go all the way and just call the Zamboni technique “super amazing unicorn magic”? In newspaper accounts (and even in our own exemplary coverage), recipients of the therapy often report renewed energy without necessarily enjoying total relief from symptoms; this may not be a sign of the placebo effect at work, but it is certainly consistent with it. And it is hard to understand how the instantaneous improvements so often described by the “liberated” can possibly be consistent with Zamboni’s actual theory of MS etiology—i.e., that poor drainage of blood from the brain encourages, over a long term, the formation of cerebral iron deposits that then lead to immunological issues and demyelination of the nerves.
These things make you go “hmm”, and when you throw in the additions to the “hmm” list provided by a March review of the Zamboni theory published in Annals of Neurology, you start sounding a little like a downed power line. Zamboni’s study claimed to be able to distinguish the intracranial veins of MS patients from those of normal people perfectly. This is not a figure of speech: they claimed literal perfection. “They reported that only MS patients and not controls met the criteria for abnormal extracranial cerebral venous outflow. This observation perfectly overlapped with the diagnosis of MS, with a reported 100% sensitivity, 100% specificity, 100% positive predictive value, and 100% negative predictive value.” Major “hmm” points there.
The authors of the review also point out that Zamboni’s proposed etiology offers no obvious explanation for why women contract MS twice as often as men, or why incidence rates around the globe get larger with greater distance from the equator. They wonder why, if MS is a vascular disorder, it almost never appears after the age of 50. They ask why retinopathy and other known consequences of poor vein drainage aren’t statistically associated with MS. Perhaps most interestingly, they point out that sufferers of head and neck cancer have, for more than a century, been receiving a (horrifying-sounding but surprisingly inconsequential) treatment known as “radical neck dissection”, which involves, among other things, the total removal of the jugular veins. If Zamboni were right, one would have expected demyelination and MS symptoms to have been noticed in these patients immediately, or at least at some point since 1906.
There might be good answers to these questions, and, indeed, Zamboni’s angioplasty/stent approach might relieve MS symptoms for reasons having nothing to do with his theoretical ideas. But his treatment will have to do significantly better than placebo in proper trials, because angioplasties and stents come with known mortality risks. And if Zamboni and his advocates are to receive the benefit of all the hypothetical “ifs”—it might work for some reason we don’t yet understand!—then common sense demands that the “ifs” whose spear-points run in the other direction be considered: everybody who’s had “liberation therapy” might drop dead at midnight on New Year’s Eve for reasons we don’t yet understand!