Colby Cosh

Colby Cosh

Maclean’s man in Edmonton writes about everything. Follow Colby on Twitter: @colbycosh

Brad goes to the Wall for MS miracle cure

by Colby Cosh on Thursday, July 29, 2010 5:36am - 103 Comments

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!

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  • http://www.ccsviclinic.ca/ rebecawatson

    I was diagnosed with Multiple Sclerosis back in 1983. I can hardly walk now and it seems my condition worsens every day. When I first heard about the Liberation procedure and its results from a friend, I thought United States would be the first to conduct the trials. I could never imagine the corruption involved. I ended up applying for this simple procedure in Poland and waiting.. The other options were to get it done in India. After researching the internet extensively, I came across http://www.ccsviclinic.ca/ . They are screening for CCSVI in Fargo, ND and have very affordable packages for the Liberation procedure in India. I called (404)461-9560 and spoke to their nurse administrator Lisa whose priceless support made me realize that we are not alone in the fight against MS. They are screening within the US and Canada, their medical travel package includes flight arrangements and help with the visas, world class accommodation and meals within their hospitals, the liberation procedure, a stent if needed, medications necessary, a site-seeing tour, Pre-and post-procedure supervision, Full medical file including copies of charts, screens, CDs of Venograms, blood work, EKGs, etc. Post Procedure Screenings, follow-up and consultation with surgeons for the next 6 months and so many other provisions Lisa told me about, I can’t recall however you might be able to find out more on their site.. http://ccsviclinic.ca/?page_id=564 . They are providing all of this at just $13000 as compared to the other companies that charge something like $20000 just for the procedure. You may also contact Lisa by emailing her at apply@ccsviclinic.ca or calling her on (404)461-9560. I am getting liberated mid- November and I am so very thankful to everyone at CCSVI Clinic for making this happen!

  • HJK

    There is a discrimination lawsuit in the works to help bring the liberation treatment to all Canadians.

    Please visit: http://www.angioplastyforall.com/

    Join us.

  • Jessica Forester

    After 6 months of offering stem cell therapy in combination with the venous angioplasty liberation procedure, patients of CCSVI Clinic have reported excellent health outcomes. Ms. Kasma Gianopoulos of Athens Greece, who was diagnosed with the Relapsing/Remitting form of MS in 1997 called the combination of treatments a “cure”. “I feel I am completely cured” says Ms. Gianopoulos, “my symptoms have disappeared and I have a recovery of many functions, notably my balance and my muscle strength is all coming (back). Even after six months, I feel like there are good changes happening almost every day. Before, my biggest fear was that the changes wouldn’t (hold). I don’t even worry about having a relapse anymore. I’m looking forward to a normal life with my family. I think I would call that a miracle.”
    Other recent MS patients who have had Autologous Stem Cell Transplantation (ASCT), or stem cell therapy have posted videos and comments on YouTube. http://www.youtube.com/watch?v=jFQr2eqm3Cg. For more information visit http://ccsviclinic.ca/?p=838.

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