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Canada: pre-announcement of a grant for planning and dissemination for ME

Discussion in 'General ME/CFS News' started by Kati, Jul 19, 2017.

  1. Kati

    Kati Patient in training

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    This came to my inbox this afternoon from the CIHR institute of Musculoskeletal Health and Arthritis. Time for a happy dance.


    The HPre-Announcement: Planning and Dissemination Grant – Institute Community Support


    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

    Call Launch: Summer 2017

    CIHR-Institute of Musculoskeletal Health and Arthritis (CIHR-IMHA) is pleased to pre-announce a funding opportunity to support a Planning and Dissemination Grant in Myalgic Encephalomyelitis/Chronic Fatigue.

    Applicants must be independent researchers with track records in clinical research. The intention of this funding opportunity is to prepare for future funding opportunities related to ME/CFS. Future funding opportunities may include but are not limited to collaborative projects in the following research areas:

    1.Studies determining the etiology and pathogenesis of ME/CFS;

    2.Studies that help to identify subtypes of ME/CFS based on biological markers and/or symptom classifications;

    3.Longitudinal studies to understand the course of disease over time to better characterize the manifestations of ME/CFS; and develop and validate outcome measures for future intervention trials; and

    4.Studies that identify of potential treatment targets for ME/CFS.

    The objective of this funding opportunity will be to fund research activities to support planning activities, partnership development and/or increasing understanding of the health research landscape that will lead to the assembly of national cohorts of patients with ME/CFS. The total amount available for this funding opportunity will be $70,000 for one grant. This amount may increase if additional funding partners participate.

    More information about this funding opportunity will be available on ResearchNet this summer.


    Best Regards,


    CIHR Institute of Musculoskeletal Health and Arthritis

    University of Manitoba

    Room 290 Brodie Centre

    727 McDermot Avenue

    Winnipeg, Manitoba R3E 3P5

    IMHA@umanitoba.ca
     
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  2. Alvin2

    Alvin2 Senior Member

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    very interesting but 70K is peanuts
     
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  3. Snow Leopard

    Snow Leopard Hibernating

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    I don't quite understand, what is a "Planning and Dissemination Grant"?
     
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  4. BurnA

    BurnA Senior Member

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    I imagine it's what it represents is what's important.
     
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  5. AndyPR

    AndyPR Tired Sam ate all the cookies!

     
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  6. Snow Leopard

    Snow Leopard Hibernating

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    Yeah, I still don't get it. I'm after a more specific answer.
     
  7. Alvin2

    Alvin2 Senior Member

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    That is good but a token gesture is not enough, they can prove they are serious when they produce a serious showing
     
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  8. Kati

    Kati Patient in training

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    It gets us a foot in the door, that's what's important

    @ballard illustrated it perfectly:

    FullSizeRender.jpg
     
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  9. Alvin2

    Alvin2 Senior Member

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    And a week after the 70K is gone will they say we did our bit or will they say here is 10 million dollars. 70K is little more then an insult.
     
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  10. Kati

    Kati Patient in training

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    I understand the anger so well, however this is a step in the right direction. With the right person being the recipient of this grant, it may well lead to much mure funding for research.

    Every government body will not give out large amount of money for a disease that does not belong to a medical specialty and that doesn't have biomarkers. Patients don't die of this in large numbers, and it is not visibly transmissible. We are facing enormous stigma in society, in research and in health care and this stigma does not stop at CIHR (Canadian Institutes for Health Research).

    We need to convince people one person at a time. You can decide to do something about it, or you can just lay there and do nothing. Your choice.
     
  11. Alvin2

    Alvin2 Senior Member

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    I'm not saying do nothing, (i never say do nothing), i am saying if they are serious then they need to demonstrate more then a token gesture.
    I understand that you get more flies with honey then vinegar, so what i have said here i would put more diplomatically and work strategically if i were speaking with government officials but i stand by my statements
     
    Last edited: Jul 19, 2017
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  12. Kati

    Kati Patient in training

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    What continues to surprise me is how the government agencies work in a vacuum without much insight and feedback from the stakeholders (us the patients) There seem to be no discussion possible, but then if there is, how would we know if the leaders are not talking?
     
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  13. Alvin2

    Alvin2 Senior Member

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    Thats the point, they see themselves as the bosses who don't need us little people telling them anything because they know whats best for us.
     
  14. Luther Blissett

    Luther Blissett Senior Member

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    It reads to me that they are looking for someone independent to advise them on the different areas of research, the expertise available, and an estimate of costs for the different types of research and what that research would accomplish.

    If my reading is right, it seems positive, in that it is an open process, and if done properly, would give them the best way of choosing to target a more specific areas of promise.

    They are not saying here's $70k, now do me a study on ME sub-types, and neither are they making a decision behind closed doors to fund a PACE style affair and say they've done their bit.
     
  15. Snowdrop

    Snowdrop Rebel without a biscuit

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  16. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Its not even peanuts. It is a single crumb.

    I'm a 'the glass if half full' kind of guy, but this $70k does not represent any change in how ME is viewed by Health Canada / CIHR / Minister Philpott.

    Nor is it a guarantee that the funds will actually be awarded, as we've seen recently with only 1 of 2 $100k opportunities funded. Or last summer when bias rejected a biological approach application because ME "is not a disease".

    It merely supports the status quo of throwing a crumb and then patting themselves on the back when responding to letters from the ME community.

    If anything, it is an insult to the hard work done by the community to work with Health Canada / CIHR. Actions speak louder than words, and they've essentially said 'we don't care any more now, then we did before'.

    I'd like to say this was a great sign that there was change in the system, but even I can't engage in that much self-delusion. It has become more evident to me that change in Health Canada will only come with great disruption.

    Should researchers submit applications? Absolutely. Its a crap shoot with the review process, and although the odds are stacked against ME, sometimes we'll win.
     
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  17. jimells

    jimells Senior Member

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    This is just another public relations campaign: "See, we are having meetings and planning to make a plan. Now go away." Not a nickel will go to fund actual research while scum like Shorter enjoy institutional support.

    A sensible and productive strategy would be to fund an already existing research program, like Ron Davis' program. But that is not going to happen because Canada has hitched its wagon to NIH policy, which is still a policy of non-research.
     
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  18. Dolphin

    Dolphin Senior Member

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    Minimal chance they will ever give 10 million. The total CIHR budget is: $773 million http://www.sciencemag.org/news/2017/03/research-stays-frozen-canadian-budget

    There are also not many researchers to make submissions. One can blame government bodies for this but I think another relevant factor is the ME community in Canada, like in many other countries, does not seem to have been raising much privately to support researchers to become or stay interested.
     
    Last edited: Jul 20, 2017
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  19. Alvin2

    Alvin2 Senior Member

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    Well put
    Since peanut crumbs are usually made of salt this probably represents rubbing salt in our wounds :bang-head:

    There is a big difference between can't and not interested. If they have to shift funding from elsewhere they can easily do so, in fact in 2009 they changed how they dispersed money in subtle but pronounced ways, less investigational and more expected financial return medical research as i recall.
     
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  20. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    Indeed. Minister Philpott could allocate millions with the flick of her wrist, much like she did in November for HIV:

    "changes to the Public Health Agency of Canada’s $26.4-million fund for HIV and hepatitis C organizations resulted in numerous, previously funded organizations losing their funding.
    Now, Health Minister Jane Philpott says she has directed PHAC to extend funding to those organizations for one year, until March 31, 2018.


    Philpott has also asked PHAC to assist organizations that were only approved for partial funding.
    "

    She's not interested in ME, that is self-evident.
     

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