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Blog: Occupy ME: "NIH Funding for ME Needs Life Support"

Discussion in 'General ME/CFS News' started by Andy, Nov 7, 2019.

  1. Andy

    Andy Committee Member & Outreach

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    http://occupyme.net/2019/11/07/nih-funding-for-me-needs-life-support/
     
    petrichor, Sean, Michelle and 10 others like this.
  2. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    I don’t mean I ‘like’ this. Nobody could like it.
    Just a disaster. And the NIH study is still not recruiting? Unless it’s changed recently.
    What is going on?
     
    alktipping likes this.
  3. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Depends what you mean by "recruiting". NIH states they are making efforts to reach the researcher community through conference presentations, holding their own conference, etc. But these are very passive approaches that are unlikely to encourage researchers in already established fields to enter a field that is notoriously difficult to get NIH funding for because of stigma, lack of research, and a whole host of other issues that NIH itself has allowed to fester for many years.

    To climb out of the hole ME/CFS is in in a time scale that matters to patients, NIH needs to be much more proactive in its "recruitment" efforts and issue funding opportunities with set-aside funding.

    Edited to add:
    Please sign the petition to tell NIH their current efforts are #NotEnough4ME
    https://act.meaction.net/page/13656/petition/1
     
    MEMarge, Michelle, Amw66 and 8 others like this.
  4. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    Did you mean extramural research or the intramural study that Dr Nath is in charge of, @Binkie4 ? The intramural study is still moving along, but what NIH does most is fund extramural research. We need a vast increase in extramural funding of a wide variety of researchers.
     
    Last edited: Nov 7, 2019
    MEMarge, Sean, Michelle and 5 others like this.
  5. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    MEMarge, ahimsa, Medfeb and 2 others like this.
  6. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Ah - thanks for clarifying that, @Binkie4 . My mind went to them recruiting new researchers to the field and I should have asked
     
    MEMarge and Binkie4 like this.
  7. AllenJB

    AllenJB Established Member (Voting Rights)

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    I think this needs a multi-tier strategy.

    How about hiring or recruiting a high profile celebrity to do a fundraising tv event?

    Cher has chronic lyme fatigue so she would be a prime candidate.

    Also petition Senators and Congressman to support a resolution for a much higher funding level at NIH?
     
    Cinders66 likes this.
  8. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Reblogged by David Tuller:
    Trial by Error: NIH Funding "Needs Life Support". Says Jenny Spotila

    Every year, Jennie Spotila deconstructs NIH funding on her Occupy M.E. blog. Last November 7, she crunched the numbers for the 2019 fiscal year, and the same day posted another blog with a more urgent message. I am re-posting that blog in full (a bit late), with Jennie’s permission.
     
    JohnM, ahimsa and Andy like this.
  9. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    NIH doesn’t list a prevalence figure for ME/CFS on it’s spending by disease page, but does for other diseases with high numbers of patients? Would be a good topic for @dave30th to follow up on to increase awareness within NIH.

    [For those wanting to look it up the disease is listed in the table as "Chronic Fatigue Syndrome (ME/CFS)", prevalence is the last column]

    https://report.nih.gov/categorical_spending.aspx
     
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