MS liberation latest: Aglukkaq under fire - Macleans.ca
 

MS liberation latest: Aglukkaq under fire


 

I see that Colleague Kingston is unsure why the federal Minister of Health is frustrated at media coverage of her ministry’s approach to the vein-centered Zamboni hypothesis about multiple sclerosis. One possible reason, I think, is that statements like those of Liberal health critic Kirsty Duncan are being repeated rather uncritically. Duncan told Kingston “They say we need evidence-based medicine but they are doing nothing to gather evidence.” Nothing? I wonder how else, but as “evidence-gathering”, one could possibly characterize the seven MS Society-funded preliminary studies Aglukkaq mentioned in her burst of finger-wagging at the media. These studies are designed to establish precisely what needs to be confirmed before the dream of a pan-Canadian trial of vein therapy for MS can appropriately be fulfilled: namely, whether there is any such thing at all as “chronic cerebrospinal venous insufficiency”, and whether it is really correlated with MS.

The religious conviction of some MS patients that they have a venous disorder is hard to account for, given the state of the evidence. It seems to be a by-product of natural frustration with slow progress on MS treatment, and, often, of conspiracy theories about sadistic drug companies and greedy, arrogant “neuros”. Some of these patients now reject the idea that they have multiple sclerosis at all—and, indeed, one must admit that there is something refreshingly categorical about such views. MS is not diagnosed by direct observation of demyelination, after all, but largely by means of functional criteria. The idea that CCSVI is not MS at all sidesteps the multiple logical problems with attributing MS to CCSVI. (One obvious example: why doesn’t anybody develop MS beyond middle age, even as the vascular system in most humans continues to fall into ever-worse disrepair?) I suspect it is almost easier to believe that there are some non-MS patients whose real problem might be a chronic vein blockage than it is to believe that MS, which is known to be a demyelinating disease, is caused or worsened by such blockages.

The problem with making grandiose statements about this wholly novel ontological entity, CCSVI, seems similar to the one that plagued the field of back surgery until fairly recently: patients presenting with chronic lower-back pain would be given MRIs, and a surgeon would go “Ahhh, here’s your problem”, point to some apparent lesion—a “slipped disc” or the like—and recommend an expensive, disabling operation. We now know, because people got around to checking by means of controlled investigations, that many of these lesions are indistinguishable from ones commonly found in asymptomatic individuals. Put in plain English, everybody’s back kind of looks like hell in an MRI, because we are imperfectly evolved to walk upright. Stronger criteria have thus been established for surgical interventions into chronic lower back pain, and even for mere medical imaging of bad backs. Something similar is likely to happen with tonsillectomies for children, which are increasingly thought to have been performed much too commonly in the past (although the rates at which they are done seem to be about as high as ever).

Like it or not, medicine no longer cuts first and asks questions later. We can’t presume CCSVI into existence; we have to ascertain the natural background rate of vein blockages, even ones that look dramatic in a venogram. You can see for yourself that this is the basic aim of the studies Aglukkaq points to; all seven involve vascular comparisons of MS patients with healthy controls.

For the record, I would like to politely distance myself from any suggestion that the strongly evidence-based treatments developed for vein-obstruction problems in the legs should be used, on the premise of a “right to blood flow”, to justify vaguely analogous and non-evidence-based treatments in the region of the head and neck. I would also like to observe that surgery for varicose veins does not normally involve surgical widening of the affected vessels with balloons or stents: instead, the veins are simply removed, perforated, or destroyed, precisely because a sufficient volume of blood can be counted on to return to the heart from the leg through other tissues.


 

MS liberation latest: Aglukkaq under fire

  1. From the Globe and Mail today:

    MS Society of Canada to fund controversial procedure

    Group setting aside $1-million for new treatment for multiple sclerosis called liberation therapy

    • Not exactly. read the whole thing. Same thing the Minister said.

      – The Multiple Sclerosis Society of Canada is setting aside $1-million for a pan-Canadian therapeutic clinical trial of a controversial new treatment called liberation therapy which would begin if research studies currently being funded by the society find that the procedure shows promise-

  2. I think I understand the nature of your argument Colby but at times you are a little disingenuous. It is not the least bit difficult to understand why so many MS patients are eager to be considered for vascular treatment. There is a growing list of testimonials in support of the efficacy of the treatment, and I would imagine that at this point a significant fraction of MS patients have some connection to anther patient who has had the treatment. The impression that the anecdotal evidence
    is uniformly positive and impressive cannot be confirmed, but there don't seem to be any counter cases that have come forward.

    I suspect another source of frustration for the patient community is that they are presumably interested in whether vascular treatment improves symptoms for a substantial group of patients already diagnosed with MS. That is a different issue than whether MS is caused by chronic cerebrospinal venous insufficiency. Your article, like the statements from the expert panel seem to ignore this logical distinction.

    • Checking the "Hypothesis is wrong but treatment still helps" idea would involve trials with sham vs. genuine balloon/stent procedures: you'll find that the believers aren't keen on this concept, but such a study is on Saskatchewan's new research agenda. Another such study, with quite a sizable 'n', is being done by a vascular surgery clinic in NY: http://clinicaltrials.gov/ct2/show/NCT01089686

      • I expected it was coming in Wall's initiative, and I certainly understand that nobody wants the sugar pill in such studies.
        Thanks for the link to the NY study, it has a surprisingly aggressive timeline.

        • It's also being funded by parties with a financial interest, but they are playing by the rules in registering the trial properly.

    • Bingo. The people I know with MS don't even care whether it's caused by CCVI or not.

      They want relief from the attacks and symptoms.

      None of the drugs really do that reliably, and they come with some brutal side effects to boot.

      • It is stupid to dangle with this. If there is a chance that the theory is right (and there have been patients who have had relief, who are any of thses organizations or individuals to stand in the way on the basis of past positions, or convictions. The best course would be to examine the cases where relief was claimed and look at each case. If there is even a glimmer of light a wider spread test should be done.
        This often happens when some new upstart threatens to upset uears of study – and committed belief- by people working in the field. Both science and medicine have been plagued by the "big man" in the field whose life's convictions are threatened aand may be crushed. A good example is Hubble and the premier scientist in the field, who ultimately had to eat crow. I think only pride and hubris keeps these people from at least having something looked at. It seems to me to be a giveawway when the one doctor who had success with this was not on the comm,ittee reaching the decision not to approve the procedure to have funded research.

        Of course we also have to be aware that there have been hoaxes.

  3. ."The religious conviction of some MS patients that they have a venous disorder is hard to account for, given the state of the evidence."

    It's not hard to account for at all. It's the same desperation that caused rational parents , on the slimmest of scientific suggestion, to blame vaccines for autism.

    My wife isn't jjumping on the bandwagon. Her science degree gives her a better overview of how clinical trials are supposed to work, and why. Most folks don't have that background, and interchangable terminology has made this a media dog's breakfast when trying to explain what's going on. The Health Minister has a valid point, and some outlets are, as you said, skimping on the fact checks and definitions.

    • Tell your wife to pick up a copy of former NEJM editor Marcie Angel's "The Truth about the drug companies, and what to do about it". As a former editor of one the world's top medical journals she has some fairly damning things to say about the pharma business model and the trial procdeures used today. If she still doubts ask her if she's an individual or a statistical model.

      • You seem to have skipped this rather fun peice of writing done by Dr. Angel.
        "Alternative medicine – the risks of untested and unregulated remedies." New England Journal of Medicine, 339(12):839-41.
        "It is time for the scientific community to stop giving alternative medicine a free ride… There cannot be two kinds of medicine — conventional and alternative. There is only medicine that has been adequately tested and medicine that has not, medicine that works and medicine that may or may not work. Once a treatment has been tested rigorously, it no longer matters whether it was considered alternative at the outset. If it is found to be reasonably safe and effective, it will be accepted."

        My wife, who has actually DONE clinical research in the past, prefers evidence to anecdote, best-science over best-sellers. And your thinly veiled "big-pharma" conspiracy talk needs to be clearly laid out, not hinted at.

        • Except that the drugs for MS are neither safe nor effective, but are the only treatment accepted by neurologists treating MS patients. I am surprised your wife doesn't know that. I think 11 billion dollars in drug sales for MS drugs that kill people and have terrible side effects is fairly clearly laid out. The neurologist that prescribed my daughter's interferon said this may or may not work I don't know. The latest studies are showing they don't work at all. Tell that to my daughter who now has liver and pancreas problems after 6 months of Betaseron. I assume these drugs went through rigorous testing and still ended up on the market. CCSVI is a venous flow condition that can be treated by a simple procedure that is well tested and very effective it just hasn't been used in this context. Clinical research is needed to assess the best testing and procedures for treating CCSVI whether or not it is associated with MS.

  4. CCSVI is recognised as it's own condition. For some reason it can be treated for all but those who have MS.

    • CCSVI is recognized as it's own condition.

      Well, arguably true I suppose, but you make it sound like this is some well known condition that people have been dealing with for years and years. It's Zamboni himself who first described this "condition" and coined it CCSVI, and he did that less than two years ago. I'm not sure we can say that something is a "recognized condition" less than two years after it was first described by one researcher as something that might even exist at all.

  5. Aglukkaq is only under fire for accepting the "expert" opinion of only one group. Had people who have actual hads-on experience with CCSVI and treatment procedures been invited to the table, it would have been a more unbiased decision, one that we could live with.
    If you only invite people of a like mind to the table, you get no discussion.

    Until the MS Society proves or disproves association between MS and CCSVI, let's treat them as separate issues.

    I'd like to have a scan to see if I have CCSVI, and if so I would like them treated to see if it alleviates some of my CCSVI symptoms.

    That would make waiting for a cure for my MS a bit more bearable.

    • Had people who have actual hands-on experience with CCSVI and treatment procedures been invited to the table, it would have been a more unbiased decision, one that we could live with.

      Given that CCSVI was first described by Zamboni in 2008, how many of those people are there? My impression is that the number of doctors with "hands-on experience with CCSVI and treatment procedures" is vastly outnumbered by the number of doctors who believe that CCSVI isn't even an actual condition.

      I'm all for people getting scans to see if they have CCSVI, I'm just with Colby in thinking we should perhaps first determine if there really is such a thing as CCSVI and whether or not it can be seen with a scan.

  6. Perhaps, Colby, your rather snide and condescending tone is intended to provoke discussion. However, as a non-desperate, informed, critically thinking MS survivor, I take exception to being disregarded in this issue, as though ignoring the actual victims of a miserable disorder (MS or CCSVI,regardless) and focusing on archaic research paradigm s will distract from the needless human suffering that continues in Canada—not the USA, not Germany, places with equal or better medical systems!!!! Whaaaaat????

    • So it's come to this: evidence-based medicine, which the profession has only begun to embrace after decades of fuss and harrumphing, has mysteriously become "an archaic research paradigm" overnight.
      As far as I'm aware, CCSVI is a matter of major public controversy only in Canada, largely because of the efforts of CTV. The mention of this acronym to the vast majority of doctors in "places with equal or better medical systems" will still earn you a dazed stare.

      • So it's come to this: evidence-based medicine, which the profession has only begun to embrace after decades of fuss and harrumphing, has mysteriously become "an archaic research paradigm" overnight.

        It's worse than an archaic research paradigm, apparently. It has become the pitiful excuse bought-off health scientists are using to snooker a gullible government minister as they gleefully watch suffering people wither away and die. Or something.

  7. I'm not sure where you get the idea that MS isn't diagnosed on the basis of observed demyelination. That's simply incorrect.

    The MacDonald criteria (the most widely used) require that the clinical presentation include "objective clinical lesions", which are only observable through MRI. The higher up the scale, the more clinical lesions you need to observe, and the more specific their distribution needs to be (e.g., 2 or more spinal cord lesions or 4-8 brain and 1 spinal cord lesions, etc.

    • But the brain-lesion criteria don't involve direct observation of the myelin, right? That's still an inferential criterion; you can still be diagnosed on attacks plus brain images alone. Pardon me if I'm misunderstanding this.

      • But have those MRI lesions ever been produced by any condition other than MS? Any autopsy information to lead us to say "Oops — I guess that MRI finding wasn't MS after all"? After dozens (hundreds) of such confirmations, it would get upgraded from "inferential criterion," no?

  8. If you want to be pedantic about it. But then you would also have to argue that x-rays are an inferential criterion of broken arms.

    The MRI reveals a "plaque" on the bran that is clear evidence of demyelination (dyes are used to actually stain the myelin). In fact, depending on whether or not you have dye injected, the MRI can reveal whether the area of demyelination is active or inactive.

    According to the MacDonald criteria, you can't, in fact, be diagnosed with MS without observation of demyelination (via MRI).

  9. If one only reads the pro-CCSVI websites gets the mistaken impression that the CIHR panel was staffed only with "neuros" and CEOs of pharmaceutical companies. However there were vascular surgeons on it, Barry Rubin (head of vascular surgery at Toronto General), Julian Spears , endovascular surgeon at St. Michael's, Jean Raymond an Interventional Radiology specialist ( the ones that routinely use balloon angioplasty), Lori West, Director of Heart Transplant Research at the Institute of Circulatory and Respiratory Health (probably seen one or two veins in her career). Daniel Reich, National Institue of Health, Radiologist probably has seen radiographic images of veins as well. However the true believers will say they were bought off or silenced by Big Pharma or did not have the expertise of CCSVI proponents.

    • I would like to know how much hands on experience those vascular and IR people have had with CCSVI. When Dr. Mcdonald was told to his face that no one who has publicly supported CCSVI would be invited to the meeting I would have to think that this was a biased decision. You should read Dr. Lorne Brandes' blog and his open letter to the fedreal health minister. If you don't know who Dr. Brandes is, he is a highly respected Manitoba oncologist.

  10. The condition Dr. Zamboni calls CCSVI was first identified in 1863. Researchers have been trying to interest neurologists in a venous connection for MS but when a group is so entrenched with pharmaceutical companies and so much money is at stake a non-drug therapy is going to be fought against and hard.The vascular "experts" on the CIHR panel have no experience at all with CCSVI, testing for it or treating it, and, therefore, are not the right experts to form an opinion.Anyone who is interested in some hard truths about the CIHR panel should read Dr. Ashton Embry's analysis – http://www.direct-ms.org. I was tested by Dr. Sandy McDonald and I have two restricted internal jugular veins. If I did not have MS I would have the same rights as others in Canada to have this vascular problem corrected.

    • Linda, I hope the best for you, and I understand your frustration over how little modern medicine has been helpful to date. Please avoid getting caught up in the following phrase:

      Liberation therapy for MS patients is not yet ready for prime time, although many with vested interests accuse others of vested interests.

      • Thank you for your kind wishes.My only vested interest is in my health. I deeply respect anyone's decision not to seek testing and treatment for CCSVI.I have made a decision for both and I would like to have the treatment in Canada.I will pay for the treatment so that public money is not used. As to research, well MS sufferers have funded the study at St. Joseph's hospital and I hope that study will start soon so that public research money will not have to be spent on MS sufferers.

  11. The International Union of Phlebology, recognized venous experts, consider CCSVI to be a very real condition that is congenital and that needs to be treated. Dr. Marian Simka is about to publish the results of a study of 381 MS patients, 97.l% of whom had restricted jugular and/or azygus veins. Other studies conducted by other experts have resulted in similar figures (Bulgaria, Italy, Jordan etc.). Doctors in the US who are allowed to test for and treat CCSVI have found similar results in MS sufferers.Dr. Sandy McDonald, Barrie, has tested close to 400 MS sufferers and has found that over 90% have restricted veins.The evidence is there and it is robust.The association of CCSVI with MS is demonstrated and the evidence is robust. Check Dr. Aston Embry's site for the scientific details – http://www.direct-ms.org.

    • Oh nonsense! None of the studies you are citing are published, and most are not double-blinded.

      The only two studies that have been peer reviewed (UK/Germany & Sweden) showed no link at all. http://www.news-medical.net/news/20100802/Researc

      The Buffalo study has preliminary (non peer-reviewed) results showing that barely a coin-toss of MS sufferers have blocked veins (55%). Oh, and 23% of "healthy" people also have blocked veins. Hardly a smoking gun, and nothing like the 90% nonsense you are spouting.

      • Nonsense to you too.The studies that are cited have been peer reviewed and have been published.The German and Swedish studies are the only studies not to find a link.Suggest you do some research before you start tossing out nonsense.

        • No, Michel, they have not been published in peer-reviewed journals, and they were not double-blind studies.

          If you want to prove me differently, provide references.

          • Al-Omari MH, Rousan LA, Internal jugular vein morphology & hwmodynamics in patiens with MS, Int.Angiol.2010 Apr;29(2):115-2e
            Simka et al. Int.Angiol.2010Apr.29(2):109-14
            Singh AV et al, J Cereb Blood Flow Metab. 2009
            Zivadinov, R et al, Int. Angio. 2010
            Do some research on your own.

          • Michel.

            I've done the research. Clearly you haven't actually read any of the articles you cite. Let's go through them, shall we?

            Al-Omani et al (2010). Not even single blinded. Quote from their paper. "The study we performed was not blinded" P. 116.

            Simka et al (2010). Not even single blinded, because they didn't bother to test anyone without MS. A really poor study.

            Singh et al (2009). Didn't test for anything at all, but rather tried to examine the theoretical potential that CCSVI could lead to iron deposition. A totally different question altogether.

            Zivadinov et al (2010). This is a pilot study has Zamboni as a co-author, contained only 24 patients and, yet again, was only single blinded. Here is the conclusion to their own study. "One of the main shortcomings of the study is represented by the absence of patients with inflammatory and non inflammatory neurological disorders in the control group. In fact, this drawback did not allow us to establish whether the presence of increased brain iron deposition and CCSVI is restricted to MS patients or shared with other inflammatory neurological conditions."

            If you are going to cite research, please do so responsibly and report what the scholars actually tested for, how they did it , and what they found. Simply throwing out number like 90% is not doing justice to the data.

          • Check Simka's latest study on 381 MS patients for the 97.1% figure. When did double-blinded studies become the Holy Grail of research? What makes you such an expert that you can call a study by Simka "poor" simply because it was not double-blinded? Perhaps you can explain why an unproven mouse study conducted just after the second world war is the absolute last word about MS (strictly an autoimmune disorder) and has been chased by neurologists ever since with nothing to show for it.

          • You are kidding, right? When did double-blinded studies become the Holy Grail of research? Well, somewhere around 100 years ago, I would imagine.

            For the very simple reason — that you are illustrating perfectly — that all people have a tendency to "see" the results that they favour. Why is it that you seem to automatically favour the studies that agree with your position that MS and CCSVI are linked, but you automatically dismiss the studies that show no link? Doctors, despite best intentions, do the same. The might look just that much harder, or give the benefit of the doubt to a borderline dark spot on the MRI or Ultrasound of an MS patient than a non-MS patient. Not for malicious reasons, just because that's human nature.

            Does it not seem suspicious to you that there is such variation in the research results? From no link, to 50% to 97%? And does it not seem suspicious that the studies with no control samples and no blinding have the highest frequencies, while the studies with control samples and blinding have the lowest frequencies?

            The Simka study had no control samples at all! Even if his 97% is right, which I doubt, it tells us very little because we don't know if 97% of ANY OTHER GROUP (including non-MS patients) might have the same frequency. It is not a controlled study. That's fine, so far as it goes. But the problem comes when people like you come along and just spout off the 97% figure without understanding what it is that it actually represents.

            And if you honestly believe that "an unproven mouse study conducted just after the second world war is the absolute last word about MS", then we have nothing left to talk about, because you clearly are not really wanting to discuss actual MS research.

      • Ted, those oft quoted German and Swedish studies are the real nonsense, they did not follow the proper protocol were very shodily done and were very small numbers(less than Zamboni's study). Also they were done by neurologists, not IR or vascular people. The neurologists need to stop making themselves look foolish by sticking their noses into areas that they are not the experts in.All the drugs approved for treating MS have gone through double blinded studies and many studies are now showing that they don't change outcomes for people who take them. The fact that 67 people who took Tysabri developed PML and 12 of those people died would suggest that double blinded studies are given alot more merit than they deserve. Those greater than 90% numbers are being reported by vascular surgeons and interventional radiologists who actually know what they are doing.

        • So let me get this right. The most rigorous studies (double blinded) don't give us perfect information (which I assume is your point with the Tysabri connection?), so your solution is to advocate for studies that are LESS rigorous? Okay . . .

          Why not just do away with studies all together.

          Honestly — I really do not understand the opposition to properly conducted medical research.

          • I have no opposition to properly conducted research, but in the case of CCSVI I think the research should be done by vascular surgeons and interventional radiologists not neurologists. I f you check who funded those German and Swedish studies you will see they were funded by drug companies. To me and alot of others that would appear to create a conflict of interest. Angioplasty or in this case venoplasty does not need to be researched it is already done on a daily basis and is an accepted treatment for various arterial and venous problems. To me the problem appears to be that neuros don't want to accept that there could be other factors than the immune system at play in MS.The only way to get the answers we are seeking is to do the procedure
            in other words clinical trials.Neurologists do not own MS, only the people who live daily with this horrible disease own it.It would be really impressive if the neuros would collaborate with IRs and vascular surgeons instead of just rejecting all evidence out of hand as impossible.

  12. The issue is not whether there is an association between CCSVI and MS. The issue is that people who have been given the MS label are being discriminated against and are denied access to a well-known, lost risk medical procedure, angioplasty, simply because they have MS. Those who live with MS want the same rights that other Canadians enjoy.That is the issue.The MS Society and the neurologists who run it do not want to lose their cash cows and have done everything they can to ensure that MS sufferers will not be afforded the same rights as other Canadians.MS sufferers would pay for testing and treatment in Canada.CIHR, the MS Society and the Health Minister are simply wrong.

    • I can empathise with the frustrations of MS sufferers for the lack of progress on therapeutic treatment.

      However, your comment is outrageously absurd.

      • What I find absurd is that Dr. Beaudet told Dr. McDonald that anyone who had expressed publicly an interest in CCSVI would not be included in the panel of experts making the decision on whether to fund this research.That is truly absurd.

  13. The Ministers of Health and the hospitals should authorize the procedure for patients who want it, trial or not. Most will pay the $ 1500.00 that it would cost in Canada (that amount is on the record with the Committee of the House on Neurological diseases.

    And, COLBY, YOU UNTHINKING, MISERABLE INHUMAN BEING, NEXT TIME YOU SEE AN MS PATIENT IN A WHEELCHAIR OR HOSPITAL BED, TELL HIM OR HER TO JUST SUCK-IT-UP; ANGIOPLASTY IS TOO DANGEROUS.

    • HELP! I CAN'T ARGUE WITH HER, SHE PLAYED THE "CAPS LOCK" CARD

      • And this is why my wife no longer shares her opinion on the MS message boards she used to post on. She has suggested a "wait for the research" approach, and has been attacked, called a sell-out, and even had her disease status questioned.

        • It may also help explain why Stewart's "counter-cases" don't come forward more often.

  14. There has been a few comments above about evidence-based medicine. Two notes on that

    1) WHAT KIND OF HAPLESS EDITORS ROAM THE HALLS OF MACLEANS INC NOT TO RECOGNIZE THIS VERY CANADIAN INNOVATION!!!!

    2) As a kind of side bar to evidence-based medicine, medical practitioners lost their privileged status as determiners of best practice. i.e. you don't really need an MD to appreciate the inferences of a well designed trial. I think this has perhaps accelerated the demands of the patients and general public to have a say in health care decisions.

    There remains those that argue that the experts are still the best ones to make the calls. (I don't really disagree) It is perhaps similar to incarceration of criminals. We have experts who can tell us the most likely way to rehabilitate criminals, still it sometimes doesn't feel right to the public at large. Balancing what the public wants with what the experts recommend is perhaps the single most important aspect of modern politics.

    • Rest assured, I'm abundantly aware of the revered David Sackett and his gang. But I am ever mindful of the gaucheness of shouting "It's a Canadian fact!" Though perhaps that is part of the fundamental business model here at Maclean's.

      As a fairly firm rule I don't like to play the expertise card in any debate. In this case, the people that everyone would have identified as the top MS experts until CCSVI was invented/discovered (whichever you prefer to provisionally believe) have many unanswered, sincere questions about Zamboni's hypothesis. The very existence of these questions has been little publicized. And of course in this thread we see the emergent, perhaps anticipatory phenomenon of people arguing that the Zamboni hypothesis doesn't really matter. (That hypothesis can't really account for instant relief from vein unblocking, so at some point Zamboni may become inconvenient to the CCSVI believers, or even an enemy.)
      I thus feel an unusually strong obligation to point to what the experts are actually saying–hopefully, without ruling out the possibility of non-expert insight and discovery. (There is certainly an important difference to be made between the informed non-expert and the non-expert who easily loses track of the difference between veins and arteries.)

      • Actually the point of my post was that in some respects there is no difference between the informed & uninformed. We certainly don't consider the Coynes & Harpers of the world particularly well suited to tell us what to do next on the economy despite the fancy (& not so fancy) degrees they hold. Why should medical policy be so different? Is it fundamentally more important than economic policy? Is it more scientific than other areas? I am actually a big fan of evidence-based political policy, however I recognize that the case remains to be made in order for it to take hold.

        • Stewart, when you experiment ethically on humans, there is a logical sequence of accumulating evidence that must be accumulated to justify interventions for trial. The people who know these things are saying the evidence is not there yet to get to that "last step." And people with far greater vested interests are shrieking over the alleged vested interests of those who know the rules for ethical research.

          Look, this may well be the breakthrough everyone has been waiting ages for. And OF COURSE it is frustrating to those who are suffering and want to leap at even the faintest glimmer of hope, because everywhere else one looks one finds darkness. But it is PRECISELY to avoid preying on the desperate that ethical research requires the underpinnings of scientific evidence to support it. First.

          • I get that. The ethics are: the procedures are happening anyway… do we take advantage of the information that they provide?

          • No, the ethics are: WHY THE HELL are the procedures happening anyway, with so little supporting evidence that we can't even justify a controlled trial? There are your ethics.

            And without a decent control group, there is not much useful information (except for side effects and price paid) that can be gleaned.

          • When you can't do a proper "before and after" on your subjects, every other possible factor you don't know about can render any results you have worthless.

            Even leaving out the double-blind problem, you need for each and every person who undergoes the procedure to provide info as basic as…an MS diagnosis. Sounds freaky, but there are people out there who say they have MS, and don't. And one or two of those can kibosh an entire study.

          • That problem gets solved addressed by random allocation to intervention group and control group. If the randomization was not perverted in some way, you would expect similar rates of mis-diagnosed patients in each group. No kibosh.

            And I suggest you WANT those people in there, since one day the "real world" will maybe apply the intervention to just that group of patients that includes the misdiagnosed.

    • You posit it (EBM) as a Canadian concept. That may or may not be true. I know from lobbying on Capitol Hill in DC that almost without exception, every single US Senator's "Health and Social Policy" aide is a re-branded former-pharma lobbyist. Perhaps they are all independantly wealthy and can absorb the $100k/yr reduction in pay without personal distress, but I doubt it. Perhaps they are just socially responsible? And Colby, when you cleary understand the scam of bogus science for cash ala AGW (gee who defines "evidence there?) I am curious how you fail to understand that redefining evidence as a statistical trend on a little understood process that has zero individual applicability is a gold standard. The standard is " the only evidence we will accept will cost tens to hundreds of millions to acquire"…kind of limits the number of players able to produce evidence.

  15. Any scientific trial has to begin with anecdotal incidents otherwise why would anyone begin to pursue any avenue? It seems to me that there is an abundance of anecdotal evidence regarding this liberationtreatment so why is the medical community so loathe to begin studies?

    • ed smith,

      Perhaps you should RTFA:

      "I wonder how else, but as “evidence-gathering”, one could possibly characterize the seven MS Society-funded preliminary studies Aglukkaq mentioned in her burst of finger-wagging at the media. These studies are designed to establish precisely what needs to be confirmed before the dream of a pan-Canadian trial of vein therapy for MS can appropriately be fulfilled: namely, whether there is any such thing at all as “chronic cerebrospinal venous insufficiency”, and whether it is really correlated with MS."

  16. I had angioplasty to clear 5 blockages. Two in each jugular, one in the azygos vein. I feel better. I started taking Ampyra. I feel better. I saw MS take my father, very slowly and horribly. I took the risk and I will continue to take risks so that I do not share his fate, and believe me all of you would too, if you knew what he went through.

    There are people who drive race cars for a living, people who box, people who go a mile below the earth to to make a few dollars a day, people who climb mountains. Those people know the risks they are taking and do these things anyway. Some do it for money and some for the thrill. The world will have no shortage of people willing to be involved in double-blinded controlled studies to determine safety and efficacy of this procedure. There is no shortage of interventional radiologists who will perform the procedure to see what happens. So if there are people willing to do it and people willing to have it done let's go ahead with it, tally the results and see what we have. I'm assuming someone will still have a problem with that proposal. My response to you: find a topic you can win, because this isn't it.

  17. Oh, Cosh – you are right except you got your examples muddled up. The "blanket back surgery" = neurologist's blanket MS drugging, and CCSVI is the next wave of knowledge .. and Canada looks like a bunch of greedy stupid bumpkins saying "snake oil, oh my!" (and I quote Freedman et al) to the rest of the world.
    We don't have to presume CCSVI into existence – but we sure can presume ourselves into a lowly medical position behind the US, Germany, Australia, etcetcetc…

  18. I think 2000 plus examples of this procdure working is more than enough.Science is generally a good thing, it;s the scientist failing as basic human beings that is the problem.If you put the blinders on tight enough and get self richeous with your own methidology ,you can ignor simple facts as you and they are.A willow bends in the wind a maple will break.I like being a willow.How does it feel being a maple in this wind?By the way i am a willow without ms..you see i was liberated January 29th 2010.

  19. Can I just say that this commenting system is pretty lame. What's wrong with the archaic listing by chronology approach?

    Scrolling up and down looking for tiny grey font on an even greyer background to figure out which comment might be the newest is pretty much a deal breaker for my patience. Wait, was the newest one 37 minutes ago? <scroll scroll scroll> Nope, here's one from 11 minutes ago — I wonder if that's the newest one or not? Let's keep scrolling up and down to figure it out.

    • You could always use the "sort by" link at the top of the comment thread. It has a "last activity" option.

  20. Colby represents the far right from a political point of view and it is no surprise he is anti-CCSVI just like I expect he is also anti-abortion, anti-big government and anti-environmental stewardship.
    I would note that there are no bad CCSVI columns, including Colby's, because every contribution keeps the topic in the public's eye. The problem will come when people like Colby are no longer talking about CCSVI and have moved on to trashing another benficial scientific advance.

    • Is inventing defamatory crapola about somebody's political positions part of the official activity of Direct-MS? Both the Canada Revenue Agency and I would like to know.

  21. I don't get it. Did Cosh ever say we shouldn't fund research? His point, and the Minister's point, is that despite all of the zealots claiming Canada is doing nothing, we are, in fact, already funding 7 studies designed to do exactly what you are asking — determine whether or not CCSVI exists and whether it is correlated with MS.

    What's the problem, exactly?

    As someone with MS, I'm somewhat confused by the venom so many seem to have for folks who are asking for medical trials to be conducted properly.

    You claim that so many have proven that it does work. But they haven't. Nothing has been proven at all. Anecdotal evidence cannot be used to make expensive, potentially harmful, medical decisions.

    Already one person has died from having a stent put in. Stanford University stopped doing the procedure completely because of the complications.

    Rushing into treatment — no matter how promising it looks from anecdotal evidence — is not good medicine.

    • Also, I am a man. Technically at least.

    • Well, I have my doubts about the bias of the researchers selected by the MS Society to conduct these studies. As to whether or not the treatment for CCSVI (not a treatment for MS) works, perhaps you should talk to Steve Garvie, Barbara Farrell, Tim Donovan and other Canadians who have had to leave the country to get treatment for a vascular problem they cannot be treated for in Canada because they have the MS label. I have talked to a number of Canadians who have had the treatment, including Steve Garvie. The person who died in California did not die as a result of the placement of a stent and this was confirmed by the autopsy performed on her.

    • Ted nobody died from having a stent put in. One patient very early on had a stent migrate to his heart, he had surgery to retrieve it and he survived. Dr. Zamboni does not advocate the use of stents. Once again the drugs are far more dangerous and ineffective than a simple 45 min venoplasty procedure. As an MS patient who does not want this procedure that is your right and you have the right to state that, but please make sure you have your facts right.The people who do want the procedure also have the right to state that. All most people want is the right to have this done in their own country even if they have to pay for it themselves.

      • Well, there have been reports of deaths as of Nov.25/10 that involved stent placement (Mr. Mostic had it done in Costa Rica). I suugest reading Colin Rose's blog about that issue.