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The CCSVI files: A closer look at the ATI documents

Documents reveal CIHR’s response to pressure to research chronic cerebrospinal venous insufficiency


 

On June 3, 2010, Peter Liu, a scientific director of the Canadian Institutes of Health Research (CIHR) in Ottawa, sent an internal email outlining his thoughts on a procedure causing medical and political schisms—and inciting patient activism. Liu, head of the Institute of Circulatory and Respiratory Health, was responding to CIHR executives’ request for his opinion about chronic cerebrospinal venous insufficiency, or CCSVI, a condition identified by Paolo Zamboni in 2008. Zamboni, director of vascular diseases at the University of Ferrara in Italy, made headlines in Canada in November 2009 with his hypothesis that multiple sclerosis, long viewed as a neurodegenerative condition, had vascular roots and was linked to blocked veins draining blood from the brain and the spinal cord. He found venous angioplasty—sending a balloon to open an obstructed blood vessel—alleviated, even arrested, symptoms.

Zamboni’s pilot study yielded amazing results but lacked scientific rigour: it was small and non-blinded; no one could duplicate its results, including Zamboni. Still, it stirred rare hope among the estimated 75,000 Canadians suffering from the incurable, degenerative condition. By June 2010, many were travelling out of country, paying upwards of $10,000 for CCSVI scanning and treatment unavailable to them at home. Some returned with YouTube testimonials, others with dashed hopes, others with complications. The issue had become a flashpoint. People with MS were mobilizing for treatment. CCSVI was up for debate in the House of Commons. The CIHR, which hands out just under $1 billion annually for scientific funding and reports to Parliament through the Ministry of Health, was under pressure to act. Canada has one of the highest per capita MS populations: three people are diagnosed every day. Eight provinces wanted to co-fund pan-Canadian trials, according to CIHR documents obtained by Maclean’s under an access to information (ATI) request.

Liu’s response to CIHR executives was cautiously optimistic as he called for clinical trials. But his advice was ignored. Instead, as hundreds of pages of documents generated within the CIHR between June and September 2010 obtained under ATI reveal, the agency embarked on a process that was focused more on political optics than scientific results and, in hindsight, designed to reinforce the status quo.

Read Anne Kingston’s feature story here. 

These excerpts from documents obtained under an Access to Information request outline the Canadian Institutes of  Health Research’s (CIHR) response to public and political pressure to research chronic cerebrospinal venous insufficiency, a new condition proposed by Italian doctor Paolo Zamboni.

See all 21 documents here.

 

 

 

 


 
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The CCSVI files: A closer look at the ATI documents

  1. This is so embarasing as a Canadian…CCSVI does work to help to ellivate symptoms. No one other than those who are frightened by change and loss of extra income claim that. It’s time for the corruption to stop and the trials to begin in earnest!

    • its time CANADA had the right help now and stop prolonging it all , its morally wrong

  2. If the proper people had followed through on Dr. Liu’s recommendation maybe we would be feeling better and have a better QOL right now. All we had to go through for NOTHING in the past three freaking years. DISGUSTING.

    FOR ALL MY FRIENDS WHO HAVE PUT UP WITH MY RANTS THE ARTICLE BY ANNE KINGSTON POINTS OUT ALL THE DECEIT WE HAVE GONE THROUGH FOR THREE YEARS. O’CANADA YOU HAVE MADE ME SO MUCH MORE UNTRUSTING.

    • its morally wrong I support the Canadians lots from UK

  3. I can’t wait to see the creative spin that the CIHR and the MS Society come up with for this one! I guess the finger pointing will be the next step, you know the “he said, she said” game. Maybe someone who has recently left the administrative staff at the CIHR will get accused of this cover-up.

    We know that the procedure does not work for everyone, but inaction will only cause Canadian tax payers to fork out billions more to pharmaceutical companies, as most provinces cover the MS medications, despite their obvious short-falling in the area of efficacy. And what about those with progressive forms of MS for which no treatments are available?

    This file has been mishandled since the evening of Monday, November 23rd, 2009…..the day the MS Society got involved. From that date a small group of neurologists have downplayed the obvious vascular links to MS. Many have ruthlessly berated patients for wanting improved quality of life. Their pride will lead to their imminent downfall. Why don’t they want to even look at this? Is it so wrong to say, “I was mistaken” and to look at the theory of CCSVI with an open mind and to learn from it and further the research?

    Imagine where we would be today had neurologists embraced this theory and looked at it scientifically rather than belittling every aspect of it because it didn’t match what they thought MS was all about!

    • Thank you for this Christopher. I am in tears wondering why for going on to year four we have been discriminated against for wanting a better quality of life. We aren’t asking for much but they have made it out to be a HOAX AND WE ALL ARE PART OF A CULT. Joe Public have believed the lies and seem oblivious on how the system really works. Well I hope now we all will start seeing the truth.

  4. The steadfast resistance by the CHIR just goes to indicate who really supports the members and pays them. The CCSVI treatment DOES work. I and many others are living proof. What ever happened to our “Just Society”? We have fought for this and get only “lip service” from our so called health system and government and i use the words health and government with “tounge in cheek”.

  5. My mom commented that she liked my picture and I wanted to point out that I am looking into a mirror from my sister for my 50th birthday, which was 2 months after treatment of March/11. I know the picture is small so you probably can’t see the details on the mirror but I wanted to tell you that it was decorated with stickers spelling out “GREATEST MOMENT” (in my entire 50 years!)–“LORI LIBERATED”.

    I am not the only person who has received dramatic improvements. Many others have also seen significant improvements. Some have seen no improvements but progression may still have been halted. For the few who say they are “worse”, I am sorry but I can’t think of any medical treatment that is guaranteed to help 100% of all recipients. I asked Canada for a “chance” because there was absolutely nothing else available for me but they didn’t think my quality of life was worth taking this chance–they’d rather see me just deteriorate than interfere with the status quo. Now we have evidence that one of their experts, in June, 2010, recommended trials and felt that “CCSVI is likely a contributing factor in a subset of MS patients” but was ignored–just like me!

  6. YOU CAN DO WHAT YOU FEEL IS RIGHT I KNOW FOR MYSELF AND MANY OTHERS [MY GROUP IS OVER 800 ] IN JUNE 2010 I GOT CCSVI TREATMENT AND GOT MY LIFE BACK…DROPPED ALL THE SO-CALLED M.S. DRUGS AND WILL NEVER GO BACK..IT IS ALL ABOUT THE MONEY NOT OUR HEALTH…IF YOU WANT TO TALK TO ME ABOUT IT MY # IS 306-948-2912 DARYL SWAIN

  7. This just confirms our suspicions. Ultimately, I dont care to be involved in a blame game. Sad as these discoveries are, they are a diversion. By taking our eyes off the prize, we are not focusing where we need to focus, and that’s on treatment. Granted it is not the magic pill for everyone, but it IS the magic pill for SOME and this fact alone makes this procedure worth doing.

  8. CCSVI treatment saved my wifes’ life!
    Two years ago Dianne was very sick and choked when she ate & drank. After CCSVI treatment, one of her improvements include that she does not choke any more.
    Neurology uses the EDSS (Expanded Disability Status Scale) for their ratings. This scale needs updated as you may not see measureable differences in Dianne’s EDSS ratings but her downward progression from MS has slowed if not stopped.
    CCSVI treatment has given us “Hope where we had no hope before”.

    • I so agree with you. ;)

  9. Its never too late CIHR and MSS of Canada to admit publically you were wrong and step up to do the right thing now

  10. We knew there was a conspiracy of silence. Who to blame? Drug Companies, MS Neurologists and those associated with Brain Sciences, Physician and Hospital Insurance firms, MSSC, Health Canada, CIHR – they are all involved in this and all culpable.

    It is vital that all fascists of this conspiracy begin to think of the people who suffer and die from MS and it’s various complications. Lot less expensive than filling bodies with drugs that do nothing to ease or eradicate this diagnosis of MS, a diagnosis that is often misdiagnosed in the first place (think Lyme Disease).

    What is required now is testing for CCSVI, Angioplasty treatment by Interventional Radiologists and aftercare for every citizen in this once great nation.

  11. It has not necessarily helped with my balance and therefore my walking. Although I have had angioplasty three times, some of the things that have improved greatly are; bladder/bowel function, constant headaches, brain fog, fatigue, heat tolerance. With those improvements my will to live has also improved . There are days’ that I feel sorry for myself, like when I can’t participate in some of the activities that I use to or just do my own cooking and housekeeping. I’m sure that a few of us feel this way.

    I’m now just happy to be here with my supportive family and friends and will continue to fight this horrible disease.

  12. It’s easy. They will never admit they were wrong, because to do so would cost a lot of money. Money for MS drugs which don’t work, money for neurologists who don’t even know the cause, money for big pharma that rake in billions. Money can make people do horrendous, dispicable things as we have all seen!

  13. ” all chronic diseases, even though the ill health is definitely
    due to damaged organs which can be recognized by physical signs-as
    arteriosclerosis, chronic heart disease, chronic kidney disease, and
    even consumption and cancer. The reason for
    including these is that they are probably secondary diseases, the
    original cause not being capable of recognition.” Dr. C. Da Fano, 29th Jan, 1921.

    If Doctor Da Fano was alive today, he’d view modern medicine and clinical science as entities detached from reality.

  14. My life has been returned to me since I received angioplasty treatment for CCSVI. I have received a miracle and yes i do beleive in faith healing the only difference is for the past twelve years I beleived I would be healed and on Jan. 27 2011 – I was!

  15. I was treated for CCSVI 2 years ago this Nov 30th…all of my “MS” SYMPTOMS ARE GONE and now I am back out in the full time workforce and enjoying life to the fullest!
    We know this does no work this way for everyone, there have been no treatments available that actually work for MS! this has been the best treatment to date and the way it has turned lives around is amazing. Pharma is killing us, the inections I was on made me so sick and I have permanent damage from them!! The Neurological community can turn this around just by coming together and look at this from our perspective, they could change the world, and our children would have a fighting chance!

  16. Now that “ANOTHER” drug pusher has been caught, we can only HOPE that the rest of the world can see the TRUTH behind CCSVI.

  17. Zambonis procedure changed my life in away I couldn’t imagine prior to November 2009. It amazes me that the ones who proclaimed to be there for MS patients are still denying it almost 4 yrs after the news broke. It has opened my eyes to the corruption in this crazy world.

  18. Since this issue was turned into a Political one rather than a Medical one, it would be good to know who the Minister of Health has gotten her ‘Expert’ guidance about M.S. from. We know she has a panel of ‘MS experts’. Strange that not one of them is an M.S. patient. I know one who has apparently been on her panel – my EX MSneuro. He’s the one already mentioned who labelled us MSers interested in the angioplasty as cultists who were falling prey to a HOAX. You want to hear something scarey? He teaches our young doctors at the University. Yet he apparently does not even know the meaning of MS as there is a youtube video where he gives a decidedly incorrect meaning of it. I often wonder how he would describe MS fatigue or MS pain? I know I cannot even guess. This man is so in love with himself that it appears that listening to anyone of us is beneath him. I wonder if ‘experts’ for the government get paid for being ‘experts’ to the government.

    You know the way they spew the term “evidence based” around? Impressive, isn’t it?. You know how Angioplasty results are fluffed off as “anecdotal”? Guess how they diagnosed me? Yup! Anecdotal evidence I gave them. Funny how that word is a dirty word when it applies to an MSers’ symptom relief but is an absolutely decent term when it applies to doctors’ diagnoses.

    And speaking about diagnoses – strange isn’t how so many people diagnosed with MS find out after years and years that – Gee Whiz! This wasn’t MS after all. It was Lyme Disease. Fancy that and in Canada too where,, by Government decree apparently, Lyme ticks do not come. The well mannered and totally law abiding little bugs, – NOT!! Of course, the same high IQ it seems, has made it next to impossible to be tested for Lyme (which is treatable) so that we are all diagnosed with MS (which, in Canada, is NOT treatable) Mensa – you are more than safe from our Canadian MS doctors and our Canadian Politicians.

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