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1st ME/CFS Canadian Collaborative Conference

Discussion in 'General ME/CFS News' started by strategist, Feb 12, 2018.

  1. Alvin

    Alvin Senior Member (Voting Rights)

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    I wondered as well, if anyone wants to take on asking them that would be great.
    Some are unpublished research so they won't be uploading those but some should be perfectly fine to upload.
     
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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  3. Inara

    Inara Senior Member (Voting Rights)

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    That's really sad :(
     
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  4. alex3619

    alex3619 Senior Member (Voting Rights)

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    Ditto. If by upright you include sitting, I would probably exceed the norm, reaching 23 hours some days, but more generally about the norm of 17 hours. Yet if you exclude sitting I might make half an hour on a good day, as in half an hour standing. During worse periods that half hour is decreased to five minutes. I am mostly housebound, which I think covers severity better, and I am close to the severe end of moderate. However I am now in a subset with both severe orthostatic intolerance and increasingly severe high blood pressure.
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    I wonder why nothing was approved. The excuse and the real reason.
     
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  6. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    It would be interesting to know. However, one factor may be that there weren't many applications. Over the years, there hasn't been a huge amount of research in Canada.
     
  7. Alvin

    Alvin Senior Member (Voting Rights)

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    Indeed, though i wonder if there is a way to get an answer out of them
     
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  8. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    There was only one application for the grant.

    Applications must score at least 3.5 (out of 5) to be eligible for the funding. The application did not surpass that threshold.

    Funding for ME research in Canada is now zero dollars.

    Canada has over 580,000 diagnosed with ME - the highest ME rates in the world (we also have highest MS rates).

    The only ME research currently conducted in Canada is by an undergrad student collecting QEEG data on ME patients.

    Canada's hope for ME research rests not with Health Canada, but on the shoulders of one undergrad student and his eligibility for student loans.

    I expressed my concerns about the lack of engagement of the Health Minister and Prime Minister in the ME crisis / epidemic to the Scientific Director of the research institute that houses ME and will be speaking with him tomorrow about potential paths to catalyze change.

    There is a faster path to change we must forge.
     
  9. Alvin

    Alvin Senior Member (Voting Rights)

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    Who made this application?
     
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  10. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Dr Moreau headed the application.
     
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  11. Alvin

    Alvin Senior Member (Voting Rights)

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    Ah, are we able to get a copy of the criteria out of 5 and what his application got (and maybe the application itself)?
    I know this is asking a lot
     
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  12. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    Sorry, I'm not permitted to share the application or the reviewers' comments.
     
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  13. Alvin

    Alvin Senior Member (Voting Rights)

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    No problem
     
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