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Amount of Canadian Government Funding for Chronic Fatigue Syndrome

Discussion in 'Action Alerts and Advocacy' started by boomer, Nov 2, 2010.

  1. boomer

    boomer Senior Member

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    I finally received a letter reply from the Minister of Health, Leona Aglukkaq, explaining the amount of funding provided by the Federal Canadian Government. It reads:

    "...
    The Government of Canada, through the Canadian Institutes of Health Research (CIHR), is supporting research on cfs and fibromyalgia. Between 2000 and 2009-10 the CRHI funded over $1.9 million in research on cfs and approximately $5.7 million on fibromyalgia.

    While the CIHR has not funded research on the relationship of xenotropic murine leukemia virus-related virus to cfs, it would welcome funding applications from researchers working in this area."

    I sent an email back expressing my surprise that my Government would actually send me this letter with such an unbelievably small amount of funding. I encourage other Canadians and anyone for that matter, to email her and tell her what a shortfall this funding is.
    Minister_Ministre@hc-sc.gc.ca

    After three decades this is truly outrageous.

    Why aren't researchers asking for funding? Why isn't the WPI partnering with Canadian partners to get funding?

    Nothing is probably going to happen until cfs patients lay on cots on Parliament Hill to demonstrate. Does it have to get to that point?
  2. Kati

    Kati Patient in training

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    Just like the US government, the canadian government spent a lot of money in not finding causes of CFS but doing psych studies and other useless stuff. I have e-mailed our health minister and just got the same letter a few months ago.

    As for demo in Ottawa, I am certainly willing to consider demo at IACFSME 2011 next fall. Something to consider.
  3. Dolphin

    Dolphin Senior Member

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    Well done on following that up, boomer. There was a discussion on that (which could always be re-opened if there were posts people wanted to reply - all they need to do is reply) at: http://www.forums.aboutmecfs.org/sh...esearch-is-funded-in-Canada-(as-of-March-2008).

    From page 4 on some of the specific studies funded are mentioned e.g. 4 listed in this post: http://www.forums.aboutmecfs.org/sh...s-of-March-2008)&p=39984&viewfull=1#post39984 . The figure of $1.9m I think will include studies that weren't done on CFS patients.
  4. Dolphin

    Dolphin Senior Member

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    $1m more since the start of the year or are they being misleading?

    Hi Boomer,

    I saved letter to you from the Minister of Health dated 27th January, 2010. In it, it said
    That means the figure has gone up by a million.

    It would be interesting to ask about what this extra million was spent on in less than a year. My guess is that they haven't spent a million in the last year, they've just gone back and claimed some projects, which weren't really on CFS, were somehow related to CFS.
  5. Dolphin

    Dolphin Senior Member

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    Studies to ignore in CIHR search results

    If one searches the list of CFS funding, one now finds:

    which got $316,977.

    However this shows up for CFSE so doesn't count.

    Similarly:
    $60,680 shows up for CCCFSM.

    $70,000 shows up for LTCFs.

    $17,500 also shows up for LTCFs.

    $59,875 is another error.
    I wonder did they make the same mistake when claiming $1.9m was spent.

    ----------
  6. Dolphin

    Dolphin Senior Member

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    I can't see any new studies since January

    The Minister is claiming a figure $1m higher than in January.

    Using the commonly used keywords:
    "cfs, CHRONIC FATIGUE SYNDROME, SYNDROME DE FATIGUE CHRONIQUE" at: http://webapps.cihr-irsc.gc.ca/funding/ isn't showing up anything new.
    myalgic - just one of the ones from above.
    XMRV - nothing.
  7. glenp

    glenp "and this too shall pass"

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    Vancouver Canada suburbs
    TY Boomer

    Thank you for posting Boomer. Do you know of any interested researchers who have applied for funding and have been turned down? I only know of the current 2 researches -- the one in Alterta and the one Jolicoeur is doing. I have written to a few researchers but most are not interested. One researcher I am corresponding with is interested but seems like they are few and far between. I have been corresponding with one for over a year now- got his interest - I sure hope he gets others interested in the retroviral link and gets his application submitted. The government can only approve applications it gets and if no one is interested in studying xmrv geez. Most have only been interested in other aspects rather then the retrovirus link with us. I don"t know what to do next. I am hoping that once our ID guys find it that things will move ahead quicker?? -- I hope I am making sense

    glen

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