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Why MS scientists are taking aim at Canada’s new science minister

Anne Kingston on how the criticism levelled at Kirsty Duncan over a controversial MS treatment is surprisingly unscientific


 
Governor General David Johnston and Prime Minister Justin Trudeau look on as Kirsty Duncan is sworn in as the Minister of Science during ceremonies at Rideau Hall Wednesday Nov.4, 2015 in Ottawa. (Adrian Wyld/CP)

Governor General David Johnston and Prime Minister Justin Trudeau look on as Kirsty Duncan is sworn in as the Minister of Science during ceremonies at Rideau Hall Wednesday Nov.4, 2015 in Ottawa. (Adrian Wyld/CP)

It was only a matter of time before Kirsty Duncan’s appointment to the newly created science-minister portfolio would come under fire from the multiple sclerosis establishment for her past support of research into a proposed theory and treatment of MS posited by Italian venous specialist Paolo Zamboni. And, with “three-two-one” precision, it arrived this week. First, in an interview with Vice on Wednesday, retired MS neurologist Jock Murray questioned whether Duncan could possibly “be aware of the difference between good science and bad science,” because she “chose to ignore the peer-reviewed scientific papers which indicated that CCSVI [cerebrospinal venous insufficiency] was not an MS breakthrough.” Murray’s criticism was tame next to a pronouncement by neurologist Michael Rasminsky in a scathing piece in the National PostRasminsky, a professor emeritus at McGill University and a former member of the MS Society of Canada’s medical advisory committee, referred to Duncan’s new position as “the most curious appointment since Caligula named his horse as consul.”

Such extreme utterances have come to punctuate the discussion of Zamboni’s research, which hypothesized that MS could be a vascular condition; he also theorized that venous angioplasty, a procedure available under provincial health plans, though not for MS, could offer symptom relief and even forestall progression. Media coverage of the procedure back in 2009 in Canada disrupted the MS status quo and shone a spotlight on people living with an incurable, degenerative condition who were eager for new approaches and treatments. The National Post story doesn’t mention that Duncan, a former scientist and associate professor of health science at the University of Toronto who holds a Ph.D. in geography, wasn’t alone in calling for further research: Yves Savoie, CEO of the MS Society of Canada, made a show of calling for “accelerated” CCSVI  research in 2010 before an all-party subcommittee Duncan created to investigate neurological conditions (autism, MS, ALS, Alzheimer’s and Parkinson’s) shortly after she won the Toronto riding of Etobicoke North in 2008; so did Alain Beaudet, head of the Canadian Institute of Health Research (CIHR), an organization that describes itself as “patient-based.”

Then, nothing. Thousands of Canadians with MS travelled offshore to sundry clinics, paying tens of thousands of dollars for CCSVI treatment. In interviews with Maclean’s and other media, some reported lasting alleviation of some symptoms; others were disappointed; some found themselves denied aftercare upon returning to Canada in violation of the Canada Health Act; there were two reported deaths. In 2011, months after the panel convened by the CIHR said it was “premature” to conduct CCSVI clinical trials, Duncan tabled a private member’s bill, Bill C-280, calling for a national CCSVI strategy: accelerated clinical trials, a national patient registry to track people travelling offshore, and ensured access to aftercare. The bill, itself mired in politicking, was defeated by six votes in 2012. That year, the Harper government announced a 100-person clinical trial; it began last year and is ongoing.

Beatrice de Gea/The New York Times

Beatrice de Gea/The New York Times

One criticism against Duncan in the National Post was that she violated a perceived “Chinese wall” between politicians and scientific research, a claim not made when Elizabeth May spearheaded a “federal framework on Lyme disease act,” a national plan for another controversial diagnosis passed by Parliament and the Senate. The Post noted that Tim Caulfield, a health-policy professor at the University of Alberta, was “concerned the [new science minister] job is being filled by an MP with no qualms about exerting “top down” political pressure on the scientific community.” That’s something no scientist wants, as the past decade attests. But CCSVI was mired in medical politics and politics-politics from Day 1; Zamboni’s hypothesis was dismissed outright by MS neurologists and MS societies, even though researchers once regarded MS as a vascular condition; in fact, links between the venous system and the neurological condition predate French neurologist Jean-Martin Charcot’s classification of it in 1868. The CCSVI hypothesis also flew in the face of the entrenched, though unproven, theory that MS is an autoimmune condition, a theory that underlines a thriving MS drug industry estimated to be worth $20 billion by 2024. In Canada, MS neurologists, many of whom worked with drug companies conducting clinical trials or as speakers, were enlisted to research CCSVI, a vascular condition, while vascular specialists were mostly left out of the loop. In such a bizarre landscape, a politician calling for scientific inquiry offered weird synchronicity. In 2011, Duncan told Maclean’s that she was frustrated with the fact that research wasn’t happening: “The CIHR put a political process in place instead of a scientific process. Evidence was being wilfully ignored from the literature, from scientific conferences, and from returning Canadians treated for CCSVI.”

What is striking about the criticism levelled at Duncan by scientists this week is how unscientific it is. Facts are cherry-picked.  In referring to “good science,” Murray, a former head of Dalhousie University’s MS unit, author of an MS textbook, and adviser to the MS Society, appears to be referring to the research published in neurological journals or by MS societies that have discredited Zamboni’s theory, and lead to scores of editorials and headlines that it has been “debunked.” But that’s not the complete picture, as this summary of CCSVI-related research papers makes clear. Research has often been conflicting. Scanning studies have also been all over the map. None has duplicated Zamboni’s original small study.

The National Post asserted “rigorous, independent studies have arguably disproven Zamboni’s hypothesis and his vein-widening ‘liberation therapy’ for treating MS.” But these studies have also raised questions. A 2013 UBC study published in The Lancet that found no connection between CCSVI and MS, and was proclaimed the “death knell” for CCSVI in a Lancet editorial, didn’t follow Zamboni’s protocol, which makes the result like comparing apples and oranges: Instead of using the widely accepted measurement of venous diameter found in textboks, the UBC team employed a different criterion for measuring vein stenosis,  one apparently not seen in published literature, as Zamboni notes here; The Lancet refused to publish his letter to the editor. The UBC study, led by neurologist Anthony Traboulsee, who is heading the ongoing CCSVI clinical trial announced by the Harper government, also deviated from Zamboni’s work in focusing on venous architecture, not blood flow. Another much-publicized and heralded 20-person study out of the University of Buffalo that found no benefit to CCSVI treatment didn’t meet its stated endpoint to improve venous flow, proving its conclusions moot; its size also renders it statistically insignificant, a criticism levelled at Zamboni’s first CCSVI trial.

Also evident in the National Post story is an unscientific sexism—an ad feminam attack—underlining criticism about Duncan’s experience as a young scientist leading an expedition to Norway, recounted in her book and another. Scientists describe Duncan, who was in charge, as “glory-hogging” and “a control freak.” She was accused of “touchy-feely emotionalism,” a decidedly gendered term. There are even shots taken at her clothing choices (deleted from the original Post story but cached here) and exercise routine. Amusingly, she’s even taken to task because she “repeatedly warned of a ‘darker side’ to science replete with power politics and resistance to change.”

In the article, Rasminsky, who declares Zamboni’s theory to be “profoundly non-scientific,” without elaborating, expressed concern about Duncan: “I’m worried about her objectivity,”  he said. “The lack of objectivity in one area certainly translates.” Like Murray, Rasminsky was a CCSVI critic; he co-authored a 2013 editorial “Goodbye to all of that: A short history of CCSVI” that noted “[i]n the last four years, the CCSVI hypothesis has turned the MS world upside-down,” as if disruption of a status quo that has yielded no advances in cause or cure in more than a century were a bad thing. CCSVI had been discredited, they wrote, referring to the UBC study: ‘The scientific process, in the face of enormous pressures, seems to have done its work.” Yet that comment reflects only part of the scientific process; some studies, noted above, report that venous angioplasty does improve symptoms of some people with MS.

For scientists to assert that the scientific process is ever over—nothing more to see here—runs contrary to how science works. It is particularly odd in the field of multiple sclerosis, which remains a medical mystery. Even so, researchers cleave to the notion that, despite wildly varying symptoms and progression, MS is an immunological disease with one trigger for disease progression, even though they don’t know what that cause is. Jock Murray, the neurologist interviewed this week by Vice, made the point in his 2004 text, Multiple Sclerosis: The History of a Disease. Even after 50 years devoted to the exploration of immunity as a primary basis for the “pathophysicological changes” in MS, Murray writes, “the evidence still remains mostly circumstantial. That there is an immunological process is evident. Whether it is the cause or the mechanism by which the cause acts is still unclear.”

Outside the official MS research orbit, new insights into the role of the vascular system and blood flow in neurodegenerative diseases, between the brain and the heart, are happening (a few examples herehere and here). The recent discovery of a brain lymphatic system linked to the vascular system also could potentially revolutionize science in the field, as suggested in this paper published last month.

The notion itself that ideas are inherently “good” or “bad” is anti-science, says Michael Shannon, a former deputy surgeon general and former co-chair of the FPT steering committee on blood governance, who supported accelerated CCSVI research in Canada: “If one looks carefully at the history of scientific revolution, it becomes very clear that good ideas are very often seen as bad science, because they fly in the face of conventional scientific thinking or beliefs,” Shannon told Maclean’s this week. “Good science, in my opinion, should ask more questions than it answers, and it should never be conducted at the expense of new ideas.”

Now Canadians will have to decide what they think of a science minister who, as an MP, was willing to ask questions and call for research into a new idea for a population numbering more than 100,000 Canadians who have no other options, even if that meant pissing off the medical establishment.


 

Why MS scientists are taking aim at Canada’s new science minister

    • DUncan is an idiot…..

      but more interesting, is this line from the above article:

      “For scientists to assert that the scientific process is ever over—nothing more to see here—runs contrary to how science works.”

      Please remember this line, and consider it the next time the Editors at Macleans spout off about global warming, and thh “consensus”

      There is no consensus, and any “scientist” who insists the debate is over….isn’t qualified to be called one.

  1. Let’s see how much farther she can get this going now!?

  2. The sad part is, we PWMS never meant to piss them off. We trusted that they had OUR interests at heart and would be thrilled to investigate – – and we were shocked to realize – they had absolutely NO interest in looking at anything but their own failing drug programs. I still feel the distress of their deep betrayal. UBC MS clinic is dead to me.

  3. I don’t know if it’s Godfrey or just the National Post, but something tells me that maybe a Royal Commission into the state of the press in this country wouldn’t be a bad idea.

    • I am concerned that the disgraceful attack on Kristy Duncan might not have been a “report” at all. I think it could have been a bought and paid for “Attack Advert” of the type we see in politics. It kind of creeps me out that they went so over the top and so vile in what they said about the woman. Maybe the reporter was drunk when he was writing it? And all the woman hate just spilled out? He sure has low standards. I think it would be good to have Rasminsky spoken to. Who the hell does he think he is? That was pure ignorance. Comparing Duncan to a horse. Fire him. He has no manners, a disgrace to this country. There is another aspect to this. I remember watching Kristie Duncan at a conference. In her speech, she said that one MS researcher said to her “CCSVI is shit and I am going to prove that it is shit”. Well, I hope that researcher gets named. Nobody who already knows the results of their research before they do it, should be in science, because knowing your results before you do it is premeditated scientific fraud. That man or woman should be disbarred from ever getting a cent of research funding again. I want to know who they are, pure and simple. Maybe a freedom of information request?

      • The one “research scientist” I am most concerned about is neurologist Anthony Traboulsee, who is heading the ongoing CCSVI clinical trial and appointed by the CIHR. I suspect he had his final report written even before starting the trial. Save the taxpayers some money and stop him from continuing to be the head of this trial now.

        Thanks Anne Kingston for continuing to keep the balanced reporting on this issue that has the MS medical establishment, as you say “pissed off”.

  4. My wife got the venous angioplasty in California in August 2013. It was our last gasp because she looked like she would drop dead of heart failure by Christmas. I was hopeful but we got a MIRACLE. And she got huge improvement ON THE OPERATING TABLE. (As have many others) The surgeon there has 2 entirely different theories about how it works so well. The balloon shakes up the vagus nerve that runs along beside the vein. and this resets misfiring nerve fibres in the nerve. And those neck veins also have nerves around the outside that detect stretch. Same deal, the venoplasty jump starts them. And then the brain finally is getting the signals from the body that it needs to run its automatic routine PROPERLY. This is called the autonomic nervous system and all the signals to and from the brain run through the vagus nerve. Heart problems in MS? vagus nerve! constipation? vagus nerve! Renauds? Vagus nerve, lost reflexes? Vagus nerve! My wife had half a dozen “autonomic dysfunction” symptoms improved or cured within 24 hours of the operation. It was absolutely amazing. How come the neurologists never thought of the vagus nerve as a connection between SO MANY MS Symptoms? Maybe in 1/3 of MS patients, the lucky 1/3 that get this extraordinary response, the vagus nerve IS the entire problem? Anyways, the procedure is safer than plastic surgery, so it is probably completely against the charter of rights and the Canada health act and freedoms to deny it to MS patients and only MS patients. Important footnote, this procedure IS now covered by some insurance companies in the USA. So it is a completely valid treatment. Insurance companies do not have millions to waste on clinical trials done by the wrong “scientists” on the wrong patients to try to disprove the wrong theory. Wrong patients? Yes indeed, the place in California screens you. After 3000 Venoplasties, they have a very good idea who will get success and who will get failure. Success is likely with certain sets of symptoms, and less likely with other sets. AND, they did not find a co-relationship between narrowing of veins and the likelyhood of success. My wife DID NOT HAVE obstructions, I remember the surgeon telling her “your veins were fine”. But her symptom set and her result on a heart rate monitor made her a very good candidate for success. Interestingly, our surgeon was in Vancouver for a conference on neurovascular health this October. Dr Traboulsee was invited but he DID NOT SHOW UP. That frankly terrifies me. Our surgeon has done around 3000 venoplasties on people with MS from all over the world. You would think Traboulsee would be somewhat interested in knowing how the big boys do it, but obviously not. The Canadian trials are a sick joke. The 6 million dollars they wasted on them could have treated about 400 people. Follow up is real simple and matching them with 400 similar MS ers who didn’t get the treatment is real simple too. This by the way can still be done. People do have medical files and all you have to do is pull the files for before and after the treatment. 2 questions, why no reporters at Newport Beach for a week or 2 to see for themselves? And why refuse to measure the improvements? They are real big, but it is hard to imagine that they are immeasurable.

    • Brian White…The hypothesis you are putting forth regarding the vagal nerve is completely different then that being defended by the author. The original theory that came under attack is that MS was caused by a lack of blood flow to the brain due to narrowed veins, hence venoplasty to enlarge the vessels. Unfortunately, the findings in medical procedures whether the surgeons follow the exact surgical instructions or another procedure that in the Canadian study was the gold standard, the results should be consistently replicated. We do cardiac bypass surgeries all over the world and despite different surgeons using different techniques, the outcomes are always predicable and easy to replicate.
      There is an expensive Canadian study that is being referred to and it sounds as though it was staffed completely by neurologists. Although a neurologist headed up the study, the plasties were all done by well know vascular surgeons using the gold standard techniques. To my knowledge there were also radiologists involved in the study. The initial report that came out of the study was that several of the participants (I do believe as many one half) did not have narrowed veins but the team was still optimistic that they might see some consistent improvements in the study participants symptoms. Unfortunately, in a large study, you need consistent results that can be replicated. The Lancet is a peer reviewed journal and they printed what came out of the study. If the doctor who treated your wife believes it is the vagal nerve, he should conduct and study and put his findings in a reputable medical journal. This study does not stop other physicians from doing their own studies. If this MP believes they are wrong, she should put together one herself and prove it. I myself have two sibling, a brother and a sister with MS. My brother has had it for 20 years and he is a successful rancher. He has the type that tends to worsen and then remit. He has never been crippled. The first symptoms affected his vision..it became very sensitive and he had to wear wrap around sun glasses. Shortly after he was hospitalized for a very severe but short-live case of paranoid psychosis. Since then he has been sensitive to warm temp. In the bath and in the outdoor heat, his vision becomes blurred. He has other strange symptoms and he tires easily but he is very active. My sister was just diagnosed at age 50. She suddenly lost vision in the left field of both eyes. Originally they thought it was a stroke but it improved and she had multiple MRIs
      . Then she thought back to a case of severe virtigo she had a few years ago. She also is temperature sensitive with blurred vision resulting and sometimes she staggers. Neither of their symptoms seem related to the vagus nerve.or diminished blood flow. The blurred vision that appears in warm water and is gone as soon as she leaves the water is especially interesting to me. This is a complex disease. I think you are right that some people for some reason get symptom relief with venoplasty but to say that vascular physicians are not participating in the studies is absolutely incorrect and to surmise that the answer is something simple like narrowed veins when many of participants do not have them is highly unlikely. People are skeptical of the medications. My brother is. My sister is trying an injection. It is a protein that the MS will apparently attack instead of the myelin sheath of her nerves. Who knows if it will work.

      tie

  5. That’s a fine defence of junk science Ms. Kingston.

    Dare we ask what your thoughts are concerning childhood vaccines and autism? Or is the medical establishment lying to us about that too?

    • I don’t think the article’s point is defending science you believe to be junk. I think instead it tries to shed some light on the absolute nonsense some are using as a ‘criticism’ of our new Science Minister. I also find it to be a very weak comment, as referencing inflammatory subjects such as, “thoughts on childhood vaccines’ to deter from the article’s strong, referenced points is a textbook example of poor reasoning. Your gross overgeneralization of ‘medical establishments lying’, is intended to do what, exactly? To show that you haven’t really said anything, except to illustrate that you haven’t read the science, or possibly to use emotionally-charged accusations to deter from facts? Not particularly scientific, or even logical…

      • This is 2015 for goodness sake. Didn’t the Liberals say something about being a party of science?

        Junk science remains junk science even when it is peddled by a female progressive in a cabinet position.

  6. Thank you, Anne Kingston, for a well-informed, unbiased, response to the ignorant articles and comments about Kirsty Duncan. People who actually follow the research, without political bias or pharmaceutical conflicts of interest, KNOW how important CCSVI is for many conditions. Even Traboulsee KNOWS that the procedure of venoplasty has had a remarkable, positive influence on 50% of the patients in his BC CCSVI Registry. NONE of the so-called MS disease-modifying drugs can claim ANY improvement in any symptoms.

    There are also many with progressive forms of MS who don’t “qualify” to take the drugs so I believe it is inexcusable to refuse them the opportunity to try a simple procedure if they want to. Maybe Kirsty Duncan can teach the Canadian Health Care System a bit about compassion.

    • Nonsense. Junk science has no place or role in our Canadian health care system.

      Keep your progressive quackery to yourself!

  7. As a very intelligent (male) friend wrote, “The science aside (the varied success reflects the varied nature of MS or any progressive disorder), what I find interesting is the superficial criticism. Apparently she’s self centred, attention seeking and wears sexy clothes. Translate that description to a male scientist; he’s driven, providing forceful leadership, and hip wearing the latest trends. A female with a dissenting opinion….”

    Gets gutted in the media for the most outrageous things. I would not legitimize those who criticize her by even calling them ‘scientists’.

    THANK YOU, Ms. Kingston, for writing something SANE.

  8. What a huge improvement this open discussion is, actually, after the last decade of chiropractors, creationists and muzzled ideological messaging.

    • Cons stuck to the science. No man or woman with such flaky views would ever receive such an important position.

  9. Because you are researching on people, there aren’t too many data points. It seemed like a treatment that might work and had at least a placebo level of statistical success. It as said flew in the face of known MS science, as did bacteria causes ulcers, and continental drift. It hasn’t had much success since, and has killed at least one person. I don’t see the big deal.
    They say Wpg is strategically the 3rd best biocluster on Earth. This will drop due to China getting sick. My current city would be 3rd in the nation, but will be 8th because it carries 1980s union baggage I think. For whatever reason they didn’t re-educate/retrain after lobbying for their own demise. The industry isn’t value-added apparently, so there wasn’t much middle class housing. At what housing there is, you basically don’t work for; you get in line for, all but 3 of more than 100 people. A mistake is to encourage mental illness; this was known by 1930s Hollywood and the greatest movie until Gene’s time. Another mistake is to give housing away instead of cash. And there is nothing wrong with giving away cash as my 3 Lions dream dictated: UK cared about her people probably before the Magna Carta.
    They say offering work is more important than money. I guess the point is to make work available in cities larger than 200000; not doing this lead to Hitler’s rise.
    At some level of luxury, you can attract the finest. This is why breeding mental illnesses is bad; you don’t get the best researchers/doctors…I’m getting help with a Helicobacter Pylori biosensor. On my own I’m figuring out a social media signaling system to demonstrate one’s mental health or efforts to minimize one’s mental illness. It is a bit like a proximity dating app I heard about almost a decade ago. Most of my 100 inventions over the next decade or two will be health related.
    Apparently the best street in Wpg is along the Forks and not Corydon. You have the river bank, clubs, the Forks, the Baseball Stadium….Canada’s 2nd best street where I can’t beat Fei Long with Ryu, is not as good as the two best (parallel) streets in Vcr (nearby is the googie area that Amazing Race went to where I got skirmishes out of my system for a while and had loonie sushi while my date gave me grief for eating unsafe sea urchin)….policies that don’t make treatment of mental illnesses prime, are bad both in that a crazy person might wipe out civilization, and in stopping solutions people from aggregating. They say CN Tower is 100 yrs in the future, because you wouldn’t want to aggregate among too many strangers and you’d want the view. I have a biz idea to put cameras on a pill bottle.
    Where should I start my businesses? I think they might help me with a coating to apply on a diseased artery. I need to learn more still. Everyone in power should serve utilitariainism; I think Kirsty does.

    • Kirsty serves Kirsty…

      that is all her history shows.

      • By the way folks…..

        If this treatment actually worked, don’t you think it would be heralded by the media from coast to coast? don’t you think other countries would be begging for more info, details etc?

        If this treatment worked, then yes, it would be great. However, the speed with which this fad dropped from the public eye is pretty much all the proof you need that it was quackery.

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