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Overview of NIH grants for ME/CFS research

Discussion in 'General Advocacy Discussions' started by ME/CFS Skeptic, Sep 3, 2020.

  1. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    Does anyone have a good overview of grants from the National Institutes of Health (NIH) for ME/CFS research and how much money each grant is receiving?

    If I recall correctly, Jason/Katz got funding to follow up on the adolescents who got ME/CFS following EBV, and Younger got a grant to test his preliminary results on a bigger scale. But there must be others.

    I thought it would be useful to get a quick overview of these grants. Grantome seems to be a useful tool for this. https://grantome.com/search?q=chronic fatigue syndrome
     
  2. strategist

    strategist Senior Member (Voting Rights)

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  3. Graham

    Graham Senior Member (Voting Rights)

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    I can't suggest anything, but I have been trying to get the NIH categorical spending webpage up for some time now, but there's always a message saying "temporarily unavailable". I guess most of us are only on this planet temporarily, so it could be quite a few years yet.
     
  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    The quickest way to get an overview of the ME/CFS research the NIH funds is probably to go to the categorical spending overview and click on the latest year for 'Chronic fatigue syndrome (ME/CFS)'. Here is the overview for 2019:
    https://report.nih.gov/categorical_spending_project_listing.aspx?FY=2019&ARRA=N&DCat=Chronic Fatigue Syndrome (ME/CFS)

    As noted by Jennifer Spotila, there is a problem that the NIH includes studies in this list that aren't really about ME/CFS.
    For the year 2019 total funding is approximately 15 million but this includes a 2 million dollar study titled "Pathophysiology of Involuntary Movements and Volitional Disorders." This is a study of - what authors call - "functional (psychogenic) movement disorders". Only at the end of their abstract do the authors note:

    "In collaboration with other groups, we are also studying the pathphysiology of mirror movements, ataxia in SCA7, and Chronic Fatigue Syndrome."​

    So probably only a small portion of that grant money goes to actual ME/CFS research. In 2018 the NIH did something similar by including a study on catecholaminergic neurodegeneration where ME/CFS was only one of the many conditions studied. Probably only a portion of the grant money went to ME/CFS research, while the NIH listed it all under ME/CFS research. There is also an intramural study on fatigue that the NIH lists as ME/CFS research.

    I suspect the total funding that goes to ME/CFS research will be more around 13 million than 15 million for 2019.
     
    Last edited: Sep 10, 2020
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  5. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    I've tried to make a preliminary overview of NIH grant funding for ME/CFS research in the year 2020. The short overview looks something like this (funding for intramural NIH studies is not included). A longer overview, with a short explanation of each study, is provided in the attached pdf document.

    upload_2020-9-10_13-12-18.png

    Only the first three are new projects that were submitted in 2020. So it's basically Jason's application to follow-up on his cohort of adolescents who experienced mononucleosis and Shungu's study of N-acetylcysteine as a treatment for ME/CFS. The third one was only 35.000 dollars to help organize the recent IACFS/ME conference.

    All the other grants have been submitted earlier, often many years ago. The study by Marshall Vance Williams for example started in 2010, the one by Nacul in 2013, the one by Unutmaz in 2016. 6/11 of the researcher initiated research grants listed above (representing a third of the money) end in 2021 or sooner. The funding arrangement for the collaborative research centers runs until 2022 and will need to be renewed then. So I think there's a danger that funding will decrease in the future because long-running grants are not being renewed fast enough.
     

    Attached Files:

  6. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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  7. dreampop

    dreampop Senior Member (Voting Rights)

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    @Michiel Tack

    It is possible that the "rocking-bed" study

    https://projectreporter.nih.gov/project_info_description.cfm?projectnumber=1R21NS108094-01A1

    may lead to a study on it as a treatment for sleep disturbance in me/cfs or me/cfs with fm, depending on the results of the first study.

    Of course, it's a bit of a stretch, but I'm trying to be optimistic.

    Almost all studies report the possibility for biomarker study, however, I'm not particularly optimistic for any of them treading new ground. Maybe someone could explain what the Nacul study will add that hasn't been explored already. The lipidomics study looks interesting (Abdullah, works with Klimas on occasion), while the Howard univeristy fmri study I couldn't quite figure out if BPS would take it and run with it. The Younger study is interesting as well, although it looks like it will take a looong time before we see results from it.
     
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  8. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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  9. dreampop

    dreampop Senior Member (Voting Rights)

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  10. dreampop

    dreampop Senior Member (Voting Rights)

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  11. Hutan

    Hutan Moderator Staff Member

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    Maybe someone could ask Vicky Whittemore at the NIH?
     
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  12. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    The thread and details of grant are in here
    https://www.s4me.info/threads/stanford-neuroinflammation-study.6052/#post-315660

    The grant is for "Imaging Inflammation In The Whole Body And Brain Of Me/Cfs Patients" and not just the brain.
     
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  13. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    I assume the increased spending reflects the processing of stored samples. They wanted to process them together to minimize variations in batches. Brian Vastag has said that publications are in process.
    https://twitter.com/user/status/1349827597346095104
     
  14. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    1) Had a quick look at new NIH grants for ME/CFS research in 2021. Seems like there are three new projects:

    upload_2021-7-27_16-45-28.png

    One study at Stanford University is doing PET imaging using radiotracer [11C]DPA-713 for translocator protein 18 kDa (TSPO) which is an established imaging biomarker of inflammation.
    https://reporter.nih.gov/search/yRt6xcKZp0uEl3CiqgghbA/project-details/10107645

    Another study hopes to dig deeper on T-cell responses in ME/CFS. These researchers from the University of Massachusetts want to study CD8 T cell exhaustion and antigen driven clonal expansion of T-cells in patients with ME/CFS.
    https://reporter.nih.gov/search/yRt6xcKZp0uEl3CiqgghbA/project-details/10185392

    A fourth study led by Benjamin Natelson at Mount Sinai will conduct the 2-day exercise testing protocol on 80 ME/CFS patients. They hypothesize that ME/CFS patients have reduced total blood volume leading to a reduced stroke volume.
    https://reporter.nih.gov/search/yRt6xcKZp0uEl3CiqgghbA/project-details/10211169
     

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