Proposal for Canadian CRC to join forces with US NIH's 3 CRC's to research ME

Discussion in 'General ME/CFS news' started by John Mac, Apr 30, 2018.

  1. John Mac

    John Mac Senior Member (Voting Rights)

    JaimeS, Inara, Andy and 17 others like this.
  2. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Mixed emotions:

    At $280k a year it beats the current $70k one off.

    So now we have another crumb to go with the one crumb we've got. Equitable ME research funding is about $92M / year.

    Its not a fait accompli - Health Canada rejected an application in 2016 because it took a biological, and not psychological, approach.

    In 2017, there was 1 other grant for ME (besides the $70K) for $100k and all applications were rejected for not being strong enough.

    So I'll believe it when the cheque gets cashed.
    Last edited: May 1, 2018
    Dechi, Inara, Indigophoton and 7 others like this.
  3. MsUnderstood

    MsUnderstood Senior Member (Voting Rights)

    If CIHR will be providing funding to one Canadian team to participate in the ME/CFS Collaborative Project, it seems vitally important that steps are taken to ensure that actual ME patients are studied. This is less likely to occur as long as those advocating for ME patients in Canada continue to promulgate the falsehood that 580,000 Canadians have been diagnosed based on data gathered by Statistics Canada.

    The Canadian Community Health Survey (CCHS) collected self-reported data by telephone. Surveyed individuals were asked if they had been diagnosed with CFS or ME. No diagnostic criteria was established, nor was any safeguard in place to ensure responders were diagnosed by physicians qualified to do so.

    It is often claimed that Canada has the highest ME rate in the world, and also that our incidence is 4X that of other countries. Do other countries, perhaps, report clinical diagnosis? Regardless, unless all countries use the same diagnostic criteria and survey method, making comparisons is meaningless.

    From Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: (

    “As with other medical syndromes that involve a multitude of symptoms and lack a definitive diagnostic test, differentiating one disease state from another similar or overlapping condition becomes a challenge . . . This makes the prevalence of ME/CFS difficult to assess.”

    According to the report linked above, ME/CFS prevalence was 4.3 times higher when determined by self report (as in the CCHS) compared with clinical assessment, in which case the Canadian prevalence of “true ME” (580,000/4.3) could instead be approximately 135,000. This is comparable to the high-end of the prevalence range most commonly quoted -- .2 percent (73,000) to .4 percent (146,000).

    Advocates claim that there is very little awareness and use by physicians in Canada of the Canadian Consensus Criteria for ME, and also that 44 percent of Canadians living with ME report that their GP is “not at all” familiar with ME. Based on these statements, plus the institutional bias, disease denial and inaccurate physician education claimed to exist in Canada, how is it possible that 580,000 Canadians have been diagnosed by physicians? Who are these physicians, and how many ME patients would each need to have diagnosed to reach that huge patient number? And if there are enough knowledgeable and qualified physicians to diagnose 580,000 patients, why do we have such a hard time finding them?

    One graph from the CCHS shows that 22.5 percent of “Chronic Fatigue Syndrome” patients aged 18 – 64 are permanently unable to work. This means that 77.5 percent of the survey responders are working. But, according to the #MEAction website, the disease “leaves 75% of those affected unable to work”. Why the discrepancy? What does this tell us about the responders to the CCHS? Might many of them not have ME at all, but instead be chronically fatigued for some other reason? Or, did the survey capture many responses from those very mildly affected?

    ME patients have witnessed more than their fair share of propaganda from researchers, physicians and governments over many years. Shouldn’t ME patients and advocates apply the same degree of scientific and statistical rigour to their message that they expect from those on the other side of the argument? In my opinion, only then will we earn respect from those we are asking to support the cause.

    With the 1st Canadian Collaborative Team Conference taking place in Montreal later this week, what better time than “right now” to be honest about what we know, or more accurately don’t know, regarding illness prevalence in Canada?
    JaimeS, Keela Too, Inara and 7 others like this.
  4. Alvin

    Alvin Senior Member (Voting Rights)


    You make a lot of very good points. Also my GP knows nothing about ME/CFS (except that both of her patients that had it spontaneously recovered :emoji_face_palm:) and nether did the many specialists i saw before getting diagnosed :emoji_frowning2:
    JaimeS, Keela Too, Inara and 8 others like this.
  5. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)


    Does anyone believe the Statistics Canada number is accurate? Probably not.

    Does the Canadian government have any other data they have produced about prevalence of ME in Canadians that can used in advocacy? Not publicly.

    Have you taken your concerns about the data to Statistics Canada? How have they responded to your concerns about the ME data? What actions did they take?

    To be frank, the govt hasn't given a fuck about Canadians with ME. That is self-evident in the research funding. The current problem isn't the data. The problem is the institutional bias.

    The current challenge isn't getting accurate data. The challenge is getting a meeting with the government to talk about the data.

    When we meet privately with them this Thursday in Montreal, we will not be wasting time and burning bridges by bickering with them over the accuracy of their data - we'll be focusing on building a working and collaborative long term relationship and addressing far more pressing issues like stopping the iatrogenic harm, and increasing access to testing and treatment, and especially, given who we are meeting with, ramping up research funding and capacity to equitable levels.

    If, and when, that research funding comes, than we can meaningfully address the accuracy of Statistics Canada's data. Until we reach that point, let us focus on the immediate challenges and the institutions that impede our access to equitable health care and funding.
    Keela Too, Inara, Medfeb and 5 others like this.
  6. petrichor

    petrichor Senior Member (Voting Rights)

    I don't know what kind of people think that self reporting for a condition with a name like "Chronic Fatigue Syndrome" is any kind of accurate measure. That many Canadians being diagnosed with CFS is a pretty absurd statistic on many levels. I'm concerned that this statistic gives people the wrong impression about what CFS is - that it's just a bit of tiredness, rather than actually being a really disabling condition. I'm also concerned that this statistic indicates that the Canadian government has the wrong impression of what CFS is, or that they don't want to believe what it really is.

    I think this statistic is actually very important. It's very plausible it's allowing the government to get away with denying what CFS really is, and allowing people in general to misunderstand what CFS really is.
    Keela Too, Inara, Sisyphus and 3 others like this.
  7. Alvin

    Alvin Senior Member (Voting Rights)

    I've given this some thought in the past and i don't know how we would get accurate numbers, many are undiagnosed, the name is crap, doctors are useless when it comes to this disease, there are virtually no specialists in it, we know little about it...
    So all that being true they still use statistics on other diseases but have a lot more data to work with, even asking on the census won't be accurate enough with few being accurately diagnosed the crummy name :emoji_face_palm:

    So i don't know exactly how to fix this problem, but the lack of funding is fixable, and training doctors is also fixable but there is a cultural not a technical issue on that one :emoji_face_palm:
    Keela Too, Inara and ScottTriGuy like this.
  8. petrichor

    petrichor Senior Member (Voting Rights)

    There are prevalence studies like those done by Leonard Jason where he, for example, rung up thousands of people to ask them about symptoms, and then interviewed and tested some of them further to arrive at a prevalence rate of CFS. You can then use those prevalence rates to estimate how many people in a country have CFS. In the UK I think the ME association uses a rate of about 0.4%, so that would mean 145,000, both diagnosed and undiagnosed, for Canada. Then on top of that as many as 80% of them are undiagnosed, so that's maybe only 29,000 Canadians actually diagnosed with CFS.
    Inara, MsUnderstood and Simone like this.
  9. Alvin

    Alvin Senior Member (Voting Rights)

    It doesn't always work this way, some diseases are more prevalent in some places then others, plus we have no idea what causes ME/CFS so we can't even theorize if its more likely or less likely in a given country.
    For example Canada has one of the highest rates of MS in the world. Using statistics that apply to the US or Europe or anywhere else an using them to calculate a rate for Canada would give demonstrably faulty numbers.
    Inara, Simone and ScottTriGuy like this.
  10. petrichor

    petrichor Senior Member (Voting Rights)

    Yeah, but it's our best guess. The best way to find out the prevalence in Canada would be to do a prevalence study like the ones Leonard Jason has done.
  11. Alvin

    Alvin Senior Member (Voting Rights)

    Indeed, its probably the best idea we have so far, though i would have not been counted 5 years ago when i was less severe and before i had the diagnosis.
    Inara and ScottTriGuy like this.
  12. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

    How about using the Canadian consensus criteria.....we know so much, yet so many physicians know nothing...grrr
    adambeyoncelowe and MsUnderstood like this.
  13. Simone

    Simone Senior Member (Voting Rights)

    The website says that the funding decision was due to be made on July 19. Has anyone seen an update on this? Do we know who the successful team is?
    Inara, Andy, Dechi and 2 others like this.
  14. Inara

    Inara Senior Member (Voting Rights)

    There is a set of symptoms one has to fulfill to get an ME diagnosis. You can check this list for yourself and/or by a clinician. That's not so difficult. But if there is no clinician to diagnose you, what can you do? There are not so many ME experts that can use their experience on top of the criteria. Why, then, can a doctor (without experience) diagnose ME better than a person with ME?

    In Germany, I would guess maybe 5-10% get a diagnosis; some guess (often correctly) they have ME by applying the criteria, and most will maybe never know they have ME but instead try to train and therapy or meditate away their "conversion disorder".

    The problem is that most probably no other diseases were checked for and excluded (and I don't mean psychiatric illnesses). But even this is something one can partly direct for oneself.

    Another problem may be that people don't check the ME criteria but think "fatigue" is ME/CFS and then say "I have ME or CFS" if they feel exhausted/tired/fatigued.

    In times where you are nearly instantly labeled with a psychiatric diagnosis and/or MUS, people have to rely more on themselves. And maybe that's the trick after all, because you go to the doctor less often.
  15. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Inara, Hutan, adambeyoncelowe and 3 others like this.
  16. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    Short answer: Funding denied.

    Our Facebook post:

    Health Canada Denies ME Research Funding...Again

    Funding for ME research in Canada is now zero dollars.

    The research hopes of 580,000 Canadians with ME now rest on the shoulders - and bank account - of one undergrad student from Laurentian University.

    The ME community learned this week that the only application for the only ME research grant was rejected by Health Canada — again. This means that there is exactly zero research dollars for a disease that Canada has the highest rates of in the world.

    Obviously there is something deeply wrong with how our health care system treats ME. It is astounding and surreal — and ethical failures — that Health Minister Petitpas Taylor and Prime Minister Trudeau fail to acknowledge or act on the ME crisis.

    Enter Andrew Pellegrini

    If not for Andrew Pellegrini, a budding neuroscientist, gathering QEEG data on ME patients in the Toronto and Ottawa areas, Canada would not have any ME research at all.

    This week, Andrew confirmed that he was financing this ME research — “a couple of thousand dollars” — out of his own pocket.

    So here’s the harsh reality about the current ME research situation in Canada: it rests on the shoulders of one Laurentian University undergrad and his bank account.

    Tell the Prime Minister, Health Minister and other Canadians: “ME research in Canada should not rest on the shoulders of one undergrad student.”

    Reach them at all four of their Twitter accounts. They have hundreds of thousands of taxpayer dollars to pay to look pretty on their Twitter pages, yet zero dollars for ME research.

    Tag us @MillionMissCan so we can retweet your message.

    Here are the Twitter handles for their accounts:

    @CanadianPM @JustinTrudeau
    @CDNMinHealth @GPTaylorMRD

    and our tweet about it.…/status/1025547242789195776
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  17. Medfeb

    Medfeb Senior Member (Voting Rights)

    Stunning. Did they give a reason publicly or privately?
    Inara, Hutan, JaimeS and 1 other person like this.
  18. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

    The 5 reviewers wrote their decisions, but we're not allowed to share publicly.
    Inara, Trish, Simone and 3 others like this.
  19. JaimeS

    JaimeS Senior Member (Voting Rights)

    Stanford, CA
    Well, that's a blast from the past. And hopefully, it'll stay there.

    PM me, will you, Scott?

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