MS liberation: in defence of Saskatchewan - Macleans.ca
 

MS liberation: in defence of Saskatchewan

COSH: “There’s no unitary global Science Court where hypotheses can be hauled in for exoneration or hanging”


 

You all know I’m sceptical of Paolo Zamboni’s vascular hypothesis about multiple sclerosis, so allow me to express support for Saskatchewan health minister Don McMorris, who is defending his province’s right to fund research into the idea. I didn’t like Saskatchewan’s politically-driven funding decision, but I don’t think there is any reason to believe that the funding cannot be useful even if the hypothesis is true. That seems to be what the MS Society is suggesting when it argues that Saskatchewan can’t possibly muster up a large enough sample to conduct a useful test of the hypothesis. From today’s Globe:

Yves Savoie, president of the MS Society of Canada, said a true clinical trial must be conducted at more than one institution and in more than one province. Because MS is so variable, “it will require well over 1,000 participants that will be recruited through a number of centres,” he said. “A single province or a single site would simply not be a way to get to the definitive answers that we all want.”

Logic and experience suggest an obvious rejoinder: a single trial, however large, won’t be the way to get an answer either. Pure statistical power is a good thing, but so is experimenter diversity. If there is any merit in the Zamboni hypothesis, the scientific community is likely to arrive at a consensus about it on the basis of many different kinds of tests, some of them modest in scale, most of them performed independently. There is danger in Savoie’s apparent insistence on a One True Trial and in his gratuitous, pre-emptive criticism of what Saskatchewan is doing: he is inadvertently encouraging the Zamboni believers’ cherished conviction that they are being ganged up on by a conspiratorial clique that desires a monopoly on truth.

And if the MS Society thinks a single, giant experimentum crucis is advisable, it would be fair to ask why it isn’t advocating one, instead of funding CCSVI research in dribs and drabs. The fact is that piecemeal accumulation is the usual means of accumulating scientific knowledge. There’s no unitary global Science Court where hypotheses can be hauled in for exoneration or hanging.

We don’t really need a trial with a sample size of thousands to confidently confirm or disconfirm the most basic claim of Dr. Zamboni: that an MS diagnosis can conceivably be verified, or falsified, from nothing more than medical images of a patient’s head and neck veins. As I’ve suggested before, we could arrive at a good initial answer to that question quickly and inexpensively. There is no sense in going ahead with inquiries into causality, or into the effectiveness of any particular therapeutic regime, until we have first established that yes, there is such a thing as “chronic cerebrospinal venous insufficiency”. Trap your unicorn first, then study its anatomy.


 

MS liberation: in defence of Saskatchewan

  1. I agree totally on this.

    “A single province or a single site would simply not be a way to get to the definitive answers that we all want.”

    Well….there's an easy way to fix that.

  2. I also found that quote in the Globe this morning to be very odd and wondered what the thinking was behind it. In a narrow sense, the statement is correct but does not go far enough: the definitive answers will only be arrived at when positive results are obtained in multiple countries. The question is should we be one of those countries?

    • For once I disagree with you Stew.

      Given the number of people clammering for this treatment, the question is: Why WOULDN'T we be one of those countries?

      After all it's my understanding that Canadians have a disproportionate number of MS sufferers per capita compared to many countries.

      • LOL, I just said it was the question… we agree on the answer!

        • So we agree… again? LOL

          Aw hell, I don't know why I even bother commenting anymore. You've got a better reputation score, write more eloquently and based on the picture you're better looking than me too. So now I suspect you're taller, make more money and probably have a hotter girl/boy friend than I do too!

          I want to hate you, I really do, but I just…can't…stop…agreeing…with…you. LOL

  3. A useful strategy is to appreciate that whenever Mr. Savoie opens his mouth, whatever follows is going to be self-serving.

    • Sue, of course, Mr. Savoie has a conflict of interest – his $450,000 salary – he wants it for life. With CCSVI there would be billions of dollars saved by provincial health departments in the future. Of course, the potential loss of such major drug revenues is of considerable concern to those that have substantial financial ties to the pharmaceutical companies that manufacture and market the current MS drugs. t is big losses for NMSS, NEUROLOGISTS, DRUG COMPANIES, WHEELCHAIR AND WALKER COMPANIES – AND SO MUCH MI HOPE ALL SEE THE REAL BIG PICTURE. WE MUST KEEP FIGHTING. CCSVI PROCEDURES ARE POPULATING ALLL OVER THE GLOBE-

  4. Trap your unicorn first, then study its anatomy.

    Good point, but a humble suggestion (which Cosh has also suggested above, and before). Perhaps before we start the unicorn hunt, we should wait to see what we find out from the studies (already ongoing in Canada) into whether or not there are such creatures as unicorns. If there are unicorns, people could be hurt trying to capture them. And if there are no unicorns, people could STILL be hurt trying to capture them, but in that case for no good reason whatsoever.

  5. For a clear insight into this issue one has to look at at whose ox is being gored here. The MS society is very well funded, it doesn't take a PhD in economics to see who their contributors are. The CMA is also deeply beholden to Rx firms. Most MDs are also deeply influenced by their education and peer pressure (and licencing agencies…ie provincial colleges)…care to take at stab at who funds that?
    Further, other than tradition and cash flow, there is very little evidence that many surgical procedures are safe or effective. Examples include back surgery, most surgical arterial grafting/cleaning, most psychiatric surgical protocols etc.
    What I see is a lucrative status quo, with tremendous financial upside for the current pigs at the trough, flexing their bureacratic muscles and reminding all about "brown envelopes", to achieve personal success.
    Maybe putting the squeeze on the generics is responsible for the current shortage of drugs (referenced elsewhere on this site.) (cont)
    .

    • In conclusion, am I the only one who sees this "controversy" as the flip side of AGW. The facts are different, the pattern is near identicle. The only difference is the medical cats had a 100 year head start and totaly controled the debate for 85 years. Just imagine how "deniers" would be ostarcized today if government had prosecuted AGW deniers for the past 100 years and we were living under rolling blackouts and brownouts as we struggled with bogus technology that represented a significant percentage of GDP, even though it didn't work all that well…just sayin'

    • It isn't as if the Liberation treatment would be administered by, say, the naturopaths. It is still a surgical procedure that will be conducted by trained surgeons; in hospitals; paid for by health canada; using drugs and medical supplies from the same channels as currently supply the health system. So, doesn't that discount a good portion of what you possit is the motivation for the opposition against this treatment?

  6. Of course, we do have a very large trial which sheds significant doubt on this therapy; the very large number of people who have been diagnosed over history with problems with veinous drainage from their brains; none of whom have ever showed any signs of developing MS. So, if there is any merit in the Zamboni therapy, which there may be, it can’t be due to opening blocked veins for drainage.

    • That doesn't make any sense. Are you serious?

      • Besides, it could be a side effect rather than a cause. A side effect with nasty consequences, like heart attack and stroke.

        And I should point out that no one yet knows what actually causes MS anyways, only what the disorder results in, and many experts believe there could be multiple causes.

        Why we wouldn't want to study that with so many people clammering to join a study is beyond me.

    • Plilly is right, that makes no sense. Zamboni has found dozens of people with veinous drainage problems who also have MS.

    • So give the MS sufferers with venous drainage problems the same treatment that is available to non MS patients with the same problems. Why discriminate against them because they have MS? The connection with MS would be a moot point then, wouldn't it?

      There are enough patients reporting significant alleviation of symptoms to warrant serious investigation. The issue here I believe is not science vs nonscience; it is protocol vs empiricism.

  7. There is nothing wrong with a healhy dose of skepticism. Thank you for recognizing the practicality of doing some effective research.

    By the way 13 of the 23 CIHR panel members were Neurologist almost all were actively part of the traditional MS medical establishment. Only 2 have surgical backgrounds and only one has endovascular neuro surgical background. A list of the panel participants is at the end to the recommendation summary on the CIHR website.

    It strikes me that the panel pmembers were not as open minded, to see the merits of some practical research.

    • That's some interesting and useful information about the makeup of the panel. For whatever it's worth, I also think it should be noted that their finding was unanimous.

      • Someone minused me on that comment… am I wrong? Wasn't the recommendation from the panel unanimous? If I'm wrong about that, please post a link to correct me.

  8. Blocked veins from the brain are not a good thing and can be easily treated. Interesting that as soon as you tie it in to MS it gets categorised as a wive's tale. Come-on people – this is not a new molecule – it's a proceedure that's done in arteries thousands of times a day around the world.

    I personally know 3 people who have had the proceedure and all three have seen dramatic changes. Hmmmmm maybe there's something to this after all?

    • Arteries, veins, potato, potahto.

      • Where was that spellbindingly, razor-like wit (and spellin) when you and Staples were supposed to be entertaining us?

    • People have kidney transplants all the time all around the world too. That doesn't necessarily mean that we should have all MS patients have kidney transplants.

      • Geesh, and you criticized the Unicorn analogy? LOL

        Last time I checked no one with MS regained their ability to walk from a kidney transplant, but supposedly that's what's happened for a number of patients in the Italian study.

        So why wouldn't we replicate the study? Many others are and we have quite a few volunteers waiting.

        • Admittedly, it's a terrible analogy. My point is simply that just because something is often done in scenario X, doesn't mean we should rush against expert opinion to do it in scenario Y as well.

          Also, I never criticized the unicorn analogy, I LOVED the unicorn analogy. I even ran with it (arguably too far, but still… that just shows the love).

    • Darn right. In fact, blocked veins can contribute to heart disease and stroke due to lack of oxygen to the heart mucles.

      People with hemochromatosis get it done all the time for just this reason.

      I'm having trouble even understanding the resistance to be frank.

  9. I wish all governments would get on board with this great new treatment for the people who suffer with this debilitating disease. If any of our politicians had to live and walk one day or even maybe one week in MS sufferers shoes, I bet we would have the funding and approval to have this procedure done! Come on Canada, wake up!

    • I bet you're right. Which would be a shame, because really dumb political decisions get made sometimes when a politician is too close to the issue to be objective.

      • Also, truly great decisions too. This is a case of a scientific body (CIHR) not being scientific, but protecting its interests and a politition who is circumventing this…

  10. Mr.Cosh is right. Until there are a number of studies reproducing the results of the Italian study, and all are collectively evaluated through a meta-analysis, we won't really know whether blocked veins are a cause or side effect and whether the treatment eleviates symptoms or cures the disease.

    The question from my perspective is therefore:

    If we have such a huge cohort of MS sufferers asking for the treatment who are spending tens of thousands to go elsewhere, why WOULND'T we want to conduct our own study to contribute to the meta-analysis?

    Surely those who suffer from a degenerative disease of this nature should have some say in whether they can sign up for such a study?

    How does the government even come out looking anything but cold-hearted when they don't even want to STUDY the treatment?

    Let me put it this way, if you had to wear a diaper and have someone feed you and wipe your butt a couple times a day, what wouldn't you give for a shot at being in a study like that which shows such promise?

    • The question is HOW do we set up our own study. I am waiting to have the procedure. I am on 3 waiting lists. If there was a study / facility in Canada, I'll be there and I'll pay the same if not more to have it done within Canada. Funding the study would be relatively easy. How do we setup the study and get "permission" with all the resistance from the "MS Experts" ?

      • I know. It's ridiculous that we wouldn't study this considering the demand and considering there are already some positive signs that this could at least relieve some of the symptoms.

        Of course you have to ask why it's okay to clear severely blocked veins for some people and not for others when everyone with blocked veins runs a higher risk of heart attack and stroke.

        There's not even one good reason in my mind to deny this procedure in the first place as far as I can tell, as it's not even considered a high risk surgery.

        Two people in my extended family have MS, including my sister's husband. Whatever petitions, demonstrations or donations are required to move this study and treatment option forward will be signed, attended and remanded by me and mine.

        No government should be telling people destined to be trapped in their bodies and doomed to die a slow lingering death that they can't try a viable option for even partial recovery.

        I'm trying not to get too worked up about it, but honestly, it seems downright immoral and cruel to block even the study of this treatment.

  11. It would be interesting if someone has any insight as to the actual level of risk of the procedure. My understanding is that it is rather minor surgery (although surgery nonetheless). My bs meter went off-scale when I read "CIHR head Dr. Alain Beaudet said experts weren't convinced Zamboni's procedure works and is safe." Again, I am happy to be corrected, but I believe that the procedure is already in use as treatment for other conditions.

    Someone should really smack Beaudet upside the head in my opinion. I get that in their expert opinion, there is no evidence that the procedure is effective and as a result they are not recommending it. That is what they were asked to do. I also get that all procedures have risk. It reminds me of Butler-Jones telling us that getting the regular flu shot was a good idea cause it might provide some protection against H1N1 (total, complete bs). Butler-Jones just believes everyone should get the flu shot every year and so he fibbed. Every time one of these old-school medical types tries to force their opinion on people by distorting the truth they diminish their value to the public.

    • I could only find the risks of angioplasty related to heart surgery, which according to statistics less than 1% of people die from complications like stroke and myocardial infarction. I suspect the latter complication would be less likely in this case too, but I don't have facts to back that up.

      The surgeons I've seen quoted in the media seem to think it's pretty low risk though. If anyone can find a better source, I'd be glad to see it so we can make a better case for or against.
      http://en.wikipedia.org/wiki/Angioplasty

    • There have been studies, not at work computer now can't cite, that show angioplasty and stents are over prescribed probably because cardiologists get paid more for performing procedures than counselling diet and exercise and smoking cessation. A few more angioplasties for someother reason isn't exactly going to melt down the entire healthcare system.

      My argument with the Saskatchewan move is the province is now in the business of funding "science" based on reactive emotional/political reasons — "This is dreadful, get me the science department immediately!"

      • I don't think its fair to characterize the Saskatchewan move that way. It's not like they take action like this often or without cause. After all the Italian study included 65 individuals and appears to have had some success, and represents what could be a low cost option of treating symptoms at least.

        I think they're just recognizing an opportunity to be involved in the study of a topic that is low risk and can possibly help people quite a bit.

  12. 42 other countries have already defined the "unicorn" of CCSVI and Colby Cosh just keeps making Canadians look like backwoods dimwits that have to be brought into the 21st century. I don't appreciate it. I wish vascular specialists would stop laying down for the insults.

  13. nice to see saskatchewan manning up with intelligent action

  14. but I don't think there is any reason to believe that the funding cannot be useful even if the hypothesis is true.

    Depends. If you need a bigger sample size, and you are underpowered, you may miss the breakthrough you were hoping to find: Type II error.
    http://en.wikipedia.org/wiki/Type_I_and_type_II_e

  15. What would we lose if the trial goes ahead? I don't see a down side in trying it out no matter what the numbers. I am suspicious of those trying to block the test. Let's ask why would it bother them? Curing a disease such as MS would put a lot of people out of work since it is a procedure and not a drug…The MS society would lose the most,, how many people are currently hired to fund raise and provide services? We found out that drug companies don't like curing diseases unless they can make money at it take for instance the research done in Edmonton where they;ve shrunk cancer brain tumors with a generic drug with no funding from the cancer society or the big drug companies. Diseases like MS are a cash cow and I am afraid that greed has taken over instead of truly trying to find a cure no matter if it is profitable or not. Lets get this trial going and find out if it works or not ……I know my friend just whats his life back even if its just a little bit..

  16. THIS IS NOT A CURE!! We all need to accept this. At the same time how long did we wait before the CRAB drugs were put out? Did the $20,000+ a year price tag speed these drugs onto the market? There is no money in the liberation treatment. Like the CRAB drugs it is not a cure, but if it means the end to me injecting myself everyday it sounds good to me!

    One of my physiotherapists other patients also has MS and just went to Mexico for this treatment. He claims an instant improvement to his day to day life, where as another person I know has gone across the Atlantic to have it down and was able to stand for the first time in 10 years. No proof? Ok PC's if you say so.

    Once again this is not a cure, it's a liberation treatment. Liberate me already!!

    • "There is no money in the liberation treatment." Hilarious.

      • Very true though eh? The clearing of a blocked vein is a low cost, overnight procedure that would possibly only have to be repeated every couple years.

        Compare this to the very expensive weekly shots my brother in law has to give himself that leave him feeling sick for at least a day, and you can see why people are so willing and eager to be a part of a study.

  17. I know someone who is getting the treatment overseas next week. I will reserve judgement until then. That being said, there are thousands (Canadian and otherwise) getting the treatment overseas. Why not examine a sample of them to find out if this unicorn exists? They all have scan images of their veins, and stories about their improvements. OK, so it's not an official clincal study, but if 1000 people independently bring in pictures of the unicorn they sighted, wouldn't that be impetus enough to start a unicorn hunt? What would it take… 1001? 1002? When do we decide that the stories are real?

  18. If CCSVI treatment had a miniscule effect like a drug then indeed 1000 subjects would be needed. However if it actually helps people improve (drugs at best make people slightly less worse) then a small trial might well show a statistically significant result. However, no matter how big a trial and no matter how good a result, the MS Society will always find fault and say we need more research before making the treatment available. The last thing MSSOC wants to see is an effective treatment for MS. Their continued fight to stop any CCSVI treatment trials has shown everyone their true motives .

  19. I agree with Allie. In terms of gathering information about the effectiveness of CCSVI, is there a way to to create a database by following up with people who have taken it upon themselves to get the treatment? In my experience, drug trials are fairly anecdotal as well — filling out questionnaires, tracking MS symptoms after injections. Accept that it would be a long-term study, not double blind, yet may reveal commonalities in patient's post-CCSVI experiences (or not). Also, whether the anecdotal alleviation of symptoms continues past the placebo stage.

    To a certain extent the debate as to whether CCSVI treats a side effect of MS or is linked to its cause is just one question. Another, and very important question, to those with MS is: Does CCSVI help reduce the symptoms of MS.

    • If I spent $00.000's, do you think I would meekly agree to being monitored for results. Reimburse, at the least, my travel expense to the place providing the 'procedure' before expecting me to provide any data for reserch that rightly should be done in Canada, except the Canadian MS society and its researchers (scientists) are too scared they may become superflous … which is something many of us have suspected for a long time!

  20. The MS Society exists because of, and for the benefit of ms sufferers, yet their latest attitude to Liberation treatment is so much favouring the status quo (can we infer big pharma?), that they may bring down a plague on their house. It is only a matter of time until impatient sufferers will either dissassociate from the MS Society or effect a radical change in the Board at the next annual meeting. It might even happen sooner through an Extraordinary Resolution. I can't wait. I'm planning on Sofia. I cannot really afford it, but I can't afford not to seek the Liberation.
    Maybe I'm in the same boat as the MS Society – time is running out for both of us unless we take decisive action
    Sidelined

  21. I think it takes courage to move on this, and for that I applaud the Saskatchewan government.

    If this treatment turns out to be effective, then not only does it validate the treatment, it shows us a blindspot in the scientific community because this thesis is actually many decades old, and yet had never been tested by the established medical community.

    Instead it took a husband watching his wife waste away who didn't care what the medical community said to test the theory, which appears to have had a very high success rates with most of the 65 patients in the study.

    "…Dr. Zamboni's wife, Elena, has undergone a battery of scans and neurological tests and her multiple sclerosis is, for all intents and purposes, gone…"
    http://www.theglobeandmail.com/news/national/rese

  22. When I say there's "no money in it" I'm referring to the longterm profitability of the treatment versus the drugs. Short term amounts flooding here or there for the study of the topic notwithstanding, it's difficult and I think naive to believe the drugs would come out less profitable in the longterm, given that their costs have been extremely high for decades.

    My brother in-law's MS drugs cost about $700 a week. His doctor has suggested this is a fairly typical cost, shocking as it is. He will likely take this or some other form of drug every week for the rest of his life, and the costs only tend to go up. What's the profit margin on that? Can we be exceptionally kind and suggest the pharmaceutical companies would only take 10%?

    If we assume my brother in-law who is 30 reaches the average life expectancy of an MS sufferer, he will live another 42 years. The drugs companies will make $141,960 in profit over that time.

    CONT'D

  23. CONT'D

    What's the cost of the treatment? It hard to say, but looking around the cost varies from $8K to $20K worldwide, but let's go wild and say you're right that specialization will drive cost and say it's 80K. So far it has been suggested the treatment may have to be repeated as often as every five years, probably less, but hey let's go with that, and lets assume an equal profit margin, the clinics would make $72K over the same time lifetime period.

    Now obviously this math is wildly speculative, so I've purposefully high-balled the treatment costs but it's still not even close. And frankly, given that renal and cardio angioplasties are done every day in this country for far less 1/10th on average, I expect that the increased specialization argument will turn out to be nonsense. Any advances here will have a broad impact and amount to shared cost with other forms of angioplasty.

    And let's be honest, that doesn't even take into account the difference between shooting toxic chemicals into your thigh every week that make you nauseous and sick versus a treatment you get once or twice a decade.

    • Oh, yeah, let's go wild and assume that a labour-intensive procedure that costs $8K in India will ONLY cost $80K here. We're on a wild and crazy economics bender! (And I notice that "a couple" years became five amidst all the madness.) But all this is, of course, irrelevant; the pious, delusional claim was that there is "no money" in CCSVI treatment, not that there's somewhat less. We aren't really talking about future profits, we're talking about what the early pioneers can make immediately from getting a few journalists to spread word of their "revolutionary" "breakthrough". You're crazy if you think Dr. Paolo Zamboni won't die rich, no matter what happens.

      • I'll agree that to say there's "no money" in the treatment at all is silly. Of course some amount of profit will be involved, but the difference is likely HUGE between ongoing profit from the drugs versus this treatment, IF IT WORKS. I think people exagerate certainly, but their point is still intact IMO because of the massive difference in the total potential profit.

        The research costs for this procedure also pale in comparison to the ongoing research costs for the drugs, so all things being equal it's self serving to point to Dr.Zamboni and say "he'll be rich!" when the drug industry is so much more so.

        By the way, those costs I listed included travel. The procedure alone costs less, so if offered in Canada it would cheaper. For example its $6900 Euros in France and Germany and $10K in the USA.

        So no need to cite India, China or Timbuktu for that matter.

        Even assuming that improvements and refinements drive up the cost, 80K is still an extremely high estimate. As far as how often the procedure would be required, obviously a lot more study is needed, but even in the case of those with hemochromatosis who have a predisposition to such blockages, it still takes a number of years for those blockages to reform.

    • The shots I am taking are daily, that means everyday with out the benefits of H.G.H or steroids.
      Colbycosh how has MS affected your life, outside of this debate?
      We also live in a country where non cosmetic surgery doesn't cost us thousands and thousands of dollars.

      Have either of you ever heard of "Prokarin"? It's a topical 'disease modifying therapy' (can't call them medications because they don't cure anything) developed by Elaine DeLack. It combines a histamine with caffeine and is an alternative medicine, not accepted by the mainstream medical community. She has had great personal success, and people who are using her therapy are walking after years in a wheelchair, didn't even need Billy Graham.

      Ms. DeLack could not get any pharmaceutical companies to pay any attention to her discovery because they saw no way to make it profitable. She has written a book called "They Said It Didn't Make "Cents"-MS-The Prokarin Story"

      I have seen 2 neurologists since my diagnosis last July and neither of them have mentioned this to me. I just read about this yesterday and will read lots more before my next appointment in November.

      In closing I don't talk about heart disease because I only know what I have read about it, I'll talk about this all day because I'm living it!

      • Question: What's the annual total cost of your drugs regardless of whose paying for it?

        • $19,575 I think. It only costs me $200, I love you Great West Life!

          • Well thank god for insurance eh?

            I also note that you're costs are on the low end of average given the MS Society states a range from $20K to $40K.

  24. Well, by God, if Bob, jim and Shannon moved a foot, wrote their name or stood up with out falling over, I'm on that waiting list (and I am), and if that makes me a crackpot-so be it….i am not going to a third world country (it will be either the US or Germany).

    You say 'based on our current understanding of the disease'…gee whiz, what if we've been wrong all along-did you know the earth used to be flat too, homosexuality was thought to be a concious choice, ulcers were caused by stress and aspirin only relieved headaches.

    yes trials are a must….and please lets use the 3000 people who have already had this done -use their images before and after, measure their EdSS…or use the next 3000…whatever, but use us.

  25. What I find shocking is that this thesis is has been around since 1863?

    1863 Rindfleisch: Dr. E. Rindfleisch noticed that, consistently in all the autopsy specimens of MS brains he viewed with his microscope, a vein engorged with blood was present at the centre of each lesion.

    1930s Putnam: Dr. T. J. Putnam researched lesions and noted that thrombosis of small veins could be the underlying mechanism of plaque formation- Putnam, T.J. (1937) Evidence of vascular occlusion in multiple sclerosis.

    1942 Dow and Berglund: Dr. Robert Dow and Dr. George Berglund continue on with Dr. Putnam's research and continue finding venous connections to MS lesions.

    1950 Zimmermann and Netsky: Dr Zimmerman and Netsky carry on with Dow and Berglund's research, and note that the lesions are indeed venous in nature, but not caused by small thrombosis as Putnam surmised.

    1980s Schelling: The story began in 1973, at the University of Innsbruck, when F. Alfons Schelling, M.D. began investigations into the causes and consequences of the enormous individual differences in the widths of the venous outlets of the human skull.

  26. Drug companies typically have high profit margins to keep investors happy.

    Government funded studies and hospital procedures, not so much.

    So I'm not sure how one argues that drug companies don't have a lot to lose without beggaring credibility.

    I'm certainly not an anti-pharma nut. I think a lot of good comes from the work they do. But let's not pretend they don't have a huge interest in protecting their investments, not to mention the influence that comes with that money.

  27. "But there is justifiable fear in the research community that if we allow research money to chase fads and allow the research agenda to be dictated by desperate sufferers, soon every "alternative" physician who can gain a following on the internet will be using politics to interfere with science."

    Not so justifiable fear. If the Liberation therapy is a bust the problem will self-correct once the results are published. If it is supported by trials, then yes the door will remain open to alternative medicine….on second thought maybe their fear is justifiable – maybe it's a fear that there's something in it?

  28. I have so much trouble with the argument that theres nothing to learn from people who have had CCSVI on their own initiative because of the placebo effect. Hiow are surgical studies carried out — no double blind studies there I would think. How long is recovery of symptoms considered to be due to the placebo effect — weeks, months, years?

    These patients have neurologists, it's not as if there's no way to measure their recovery (or their relapses) based on their patient history. Why is there no initiative to follow them systematically, building knowledge about the effects of this procedure. The federal government doesn't want to fund a clinical trial — fine, I have no problem with that — but really why is there no interest in following the people who have already had the procedure?

    • So because double-blind studies are difficult in some contexts, we shouldn't insist on them when they are easy? Even the CCSVI believers postulate an immediate recovery which then attenuates–which is not only (a) precisely what one would expect from placebo but is also (b) precisely the inverse of what we would expect if Zamboni's hypothesis about cerebral iron deposits and demyelination were actually true.

      • Again, why is this either/or? I'm not saying to not proceed with the double blind imaging research that I understand has been funded. I'm saying also systematically follow the people who have had the procedure, building a database of more information about the effect of this procedure on recovery or relapses. It seems to be a big sample size. They have neurologists for objectivity if their own descriptions are suspect.

        You said it yourself, CCSVI believers postulate. Is this really what happens; that the recovery attenuates? Anecdotally there have been some quite dramatic remissions. How long does it take for these recoveries to attenuate, if they indeed do? Do the symptoms go back to pre-CCSVI levels? Does anyone know or care to?

  29. There is such a concerted push against Liberation procedure trials in the media, the medical establishment and the MS industry that it really does seem politically coordinated. Saskatchewan has stepped forward to offer funding for a trial but the CHIR report and the MS Society pronouncement seem intended to place a professional chill on any would be applicants. Certainly it's easy to see an at least implicit conspiracy there.

    I thank God that there is a world outside of Canada because if it were left to the Canadian establishment we would never know if the procedure is effective or not. But empiricism will prevail over "science" in the end, and science will be better for it.

  30. Yeah well it's interesting that some of the doctors are saying they see no effect from the treatment, while others say they do but it's likely a placebo effect. Seems no one can get their stories straight.

    This whole thing reminds me of the science around gastritis and peptic ulcers. For decades everyone thought it was merely a matter of bad diet or a stressful lifestyles.

    Barry Marshall and Robin Warren, who ultimately proved that the condition was actually caused by a virus, confronted significant opposition to their hypothesis that peptic ulcers are caused by the bacteria Helicobacter pylori.

    Companies like GlaxoSmithKline and Astra had an annual income of over $8 billion from the sale of ulcer treatments such as “Tagamet” and “Zantac”. Not surprisingly, they were antagonistic to the findings.

    And when you note that the two scientists in question collaborated for over two decades to prove their case for this simple, yet overlooked cause of the disease, you can understand the unwillingness of MS sufferers to wait for medical science to catch up in the case of the liberation treatment either.

  31. it appears to me to be a 'no-brainer' to proceed with this treatment. How do you get clinical trials and data without trials to produce the data? A consenting adult should have the right to try a procedure that could very well be the breakthrough needed.
    Let's look at the very expensive chemo treatments- much appreciated, much needed, but not always effective in the long term. Is this not of a similar nature??

  32. "We don't really need a trial with a sample size of thousands to confidently confirm or disconfirm the most basic claim of Dr. Zamboni: that an MS diagnosis can conceivably be verified, or falsified, from nothing more than medical images of a patient's head and neck veins."

    There are MS patients turned away from so-called "liberation therapy" because they have no observable vein issues affecting blood flow. So it's not clear why this is a pre-requisite to doing clinical trials on the procedure itself.

    For people who do have constricted veins or some other veinous issue that affects blood flow away from the brain, does treatment of that specific problem help with their MS symptoms? Some people who have had it done say yes. Proper clinical trials into this question will tell us whether it's placebo or, if not, how many people can benefit.

    And whatever answer we get from that question will help MS patients. Either those with the applicable veinous issues will have a new treatment available locally, or they will know there's no point spending tens of thousands of dollars to go overseas for it.

  33. I’m not used to blogging and having material out there. Your site here is extremely informative and offers me with a lot more understanding as to making an effect when leaving comments. Please continue your posts and I can carry on and read all of them.

  34. These nitwits at the MS Society should really talk to each other. Here we have Yves Savoie claiming that we need 1,000 participants in a nationwide trial, blah blah blah, while over at the CBC website we have a quote from Jock Murray who is still claiming we shouldn't do anything due to the Swedish and Germany trials, which, despite being proven to be flawed, were very, very small trials that were not done correctly. I'm still not sure why we have to get the permission of the MS Society for any trials – it's obvious they don't know much about MS or they would have cured it by now. But beyond all that, it appears that we have a whole bunch of people who have a vein problem – why can't we just fix that for them using the proper professionals, not a bunch of drug pushing neuros.

  35. This whole mess is unbelievable and tragic for those with MS. It's time for our leaders to do what's right – tell the MS Society to get on board or go home. There are lots of compassionate, caring, professional doctors who would no doubt love to be involved in a national trial with a treatment arm in order that those with MS can actually be helped, instead of being mocked and bullied by the MS Society and the so-called "experts" at CIHR.

  36. All I want is to be able to trade my crab drugs for the procedure. The RISK…REWARD ratio in favor of rewards. What monetary benefit would you be seeing by writing such rubish other than making yourself look like a fool. Like the premeir of saskatchewan said "this the right thing to do".

  37. 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.