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USA: NIH funding for ME/CFS research

Discussion in 'General ME/CFS News' started by Andy, Nov 6, 2020.

  1. Andy

    Andy Committee Member & Outreach

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    NIH Funding for ME in 2020: Falling Flat
    http://occupyme.net/2020/11/06/nih-funding-for-me-in-2020-falling-flat/
     
  2. rvallee

    rvallee Senior Member (Voting Rights)

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    Collins lied to us. As is tradition.

    My feeling is that there's just too much internal opposition to do any more than this but frankly that's not our problem, sort out your internal politics crap by yourselves, it shouldn't impact people's lives, this is completely unprofessional.

    Remains to be seen how long it will take for Long Covid to have an impact but one thing that's been made perfectly clear is that until a pandemic causing a massive indisputable influx of cases we would have remained stuck buried in the shed behind the building. Nothing was going to happen until then. No one was willing to do anything to make any bit of progress. Not anyone in a position to do something about it anyway.

    Biggest failure of expertise in human history. And growing. Not an easy feat, frankly. That takes incredible ideological dedication.
     
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  3. strategist

    strategist Senior Member (Voting Rights)

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    Yes, the explanation that seems to make sense is that too many at the NIH don't believe ME is a legitimate or important area of research. They've had enough time to set up a credible research program.

    The intramural study to me seemed like the NIH wanting to see for themselves whether ME was real or not.

    I'm not sure how anyone who is sufficiently informed can doubt that ME is not a natural entity (as sopposed to a diagnostic construct that attempts to describe something which does not really exist).
     
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  4. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

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    I agree completely. I know some people are pessimistic about long-covid, but the research situation for ME/CFS is currently so neglectful that it barely takes anything to improve the situation significantly.

    Europe and America have completely screwed up the handling of Covid to a almost unthinkable degree. The amount of people who will develop long term effects from this autumn and winter is going to be outrageous and now there are established long-covid communities, knowledgeable science journalists and curious researchers to pick them up and run with the ball.

    Even if every single case of long-covid somehow ends up having nothing to do with ME/CFS. Then we'll still be able to leech off of research into concepts like fatigue, PEM and brain fog which are all symptoms that have been neglected by medicine. Not to mention all the incredible coverage we have gotten, thanks to amazing ME advocates, ME organisations, excellent journalists and empathetic long-covid patients. I mean we had a positive comment in Theguardian criticizing CBT and GET, a paper that for the past 5 years has been aggressively anti ME/CFS.
     
    Last edited: Nov 7, 2020
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  5. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    "Notice of Correction to Specific Areas of Research Interest for PAR-20-168 "Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)"
    Notice Number:
    NOT-NS-21-013
    Key Dates
    Release Date:
    November 5, 2020"

    The bit in italics has been completely removed.
    https://grants.nih.gov/grants/guide/notice-files/NOT-NS-21-013.html
     
    Last edited by a moderator: Nov 10, 2020
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  6. cfsandmore

    cfsandmore Established Member (Voting Rights)

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    Looks like the NIH decided the money budgeted for MECFS will go to Alcoholism.
     
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  7. strategist

    strategist Senior Member (Voting Rights)

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    Regarding the "Notice of Correction to Specific Areas of Research Interest for PAR-20-168 "Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed)"

    Is it a loss to not have studies on yoga, acupuncture, probiotics and the like? Probably not.
     
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  8. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Well, if you put it that way... ;)
     
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  9. Sisyphus

    Sisyphus Senior Member (Voting Rights)

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    The hundreds of millions wasted on NCCIH continue to to eat our lunch, breakfast and dinner. That project has discovered on invented zero new, effective treatments for any disease. It’s an attempt to place a stamp of government approval on various forms of BS at the whim of Tom Harkin, an honest description of whom I can’t post in this forum. He was a US Congressman ... well, that’s bad language also, but the filter allows it ;-).
     
  10. Andy

    Andy Committee Member & Outreach

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  11. rvallee

    rvallee Senior Member (Voting Rights)

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    This seems misguided.





    https://grants.nih.gov/grants/guide/notice-files/NOT-TR-21-013.html

    NCATS is National Center for Advancing Translational Sciences, which seems very relevant here.

    It's really weird how, of all professions, in medicine it's perfectly OK to just decline to do your job without a valid reason, especially when your job is very relevant to the issue. The dysfunction is incredible.
     
    Last edited by a moderator: Dec 17, 2020
  12. rvallee

    rvallee Senior Member (Voting Rights)

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    Moved from this thread:
    Possibility of ME or PVFS after COVID-19, Long Covid

    Just want to mention about something that could be pretty significant. Joe Biden has announced a major change to the high-level breakdown of the US government, elevating a science office to cabinet level, giving this office far more influence than it would normally have. And a lot more in discretionary budget.

    Forgot the name but the person named to the post is reportedly a famous geneticist. I would be surprised if he does not know of Ron Davis. There could be an open door to get friendly ears that can connect to mouths that can make a lot of things happen. I doubt there would be that much interest in ME itself or the chronic illness crisis, but Long Covid is still largely unheard of, a very minor topic that barely anyone thinks about. This could change things and snowball into bigger things.

    Something for OMF and SolveME to work together on, perhaps. The payoff could be massive.
     
    Last edited by a moderator: Jan 21, 2021
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  13. strategist

    strategist Senior Member (Voting Rights)

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    I had the same thoughts. Eric Lander directed the Human Genome Project. There's a good chance he knows who Ron is and will listen to him.

    The massive failure to contain the coronavirus will also create so many long haulers that it won't be possible to ignore the problem of infections causing disabling chronic illness in adolescents and younger adults. The harm caused by the false psych theories will be undeniable.
     
    Last edited: Jan 18, 2021
  14. leokitten

    leokitten Senior Member (Voting Rights)

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    Eric Lander is the founding director of the Broad Institute of MIT and Harvard, he’s also had a major impact in computational biology and cancer research
     
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  15. Sean

    Sean Senior Member (Voting Rights)

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