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Solve ME/CFS Initiative: "Congress to HHS: What's replacing CFSAC?" [easy form to fill in to contact your reps]

Discussion in 'Advocacy Action Alerts' started by Andy, Dec 4, 2018.

  1. Andy

    Andy Committee Member & Outreach

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    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00042&cid=
     
  2. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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  3. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Got to admit that I don't really understand the politics of the US situation, but best wishes to all those working to improve things.
     
  5. Andy

    Andy Committee Member & Outreach

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  6. Medfeb

    Medfeb Senior Member (Voting Rights)

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  7. WillowJ

    WillowJ Senior Member (Voting Rights)

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    Not sure anyone fully does. Especially right now.

    But we do know that:

    • The largest research funder in the US (also the largest funder worldwide) is the US NIH
    • NIH is nominally accountable to Congress (although Congress is not good at managing federal agencies, and it's not considered that Congress has expertise in science)
    • Congress directs the overall budget of NIH, like it does with any federal agency
    • NIH allocates most of this budget by itself
    • However there is precedent for Congress to direct some funds, as it has done with HIV/AIDS, cancer, Alzheimer's, and other conditions
    • Levels of research funding tend to be compared to the historic high in 2003. So pretty much all diseases and conditions tend to think they have low funding, as the peak of 2003 is not matched (in inflation-adjusted dollars).
    • Other disease-specific bills have passed during the current legislative season

    https://www.ncbi.nlm.nih.gov/books/NBK45367/
    https://everipedia.org/wiki/lang_en/National_Institutes_of_Health/

    https://www.mcknightsseniorliving.c...ill-passes-in-house-heads-to-presidents-desk/
    https://www.govtrack.us/congress/bills/109/s843 (autism)
    https://www.govtrack.us/congress/bills/115/hr931 (firefighter cancer registry)
    https://www.govtrack.us/congress/bills/115/s292 (cancer in children)
    https://www.sciencemag.org/news/2016/02/nih-s-10-set-aside-aids-begins-slip-2016

    edit: I changed "most funding" to "largest funder". Not necessarily the same.
     
    Last edited: Feb 5, 2019
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  8. WillowJ

    WillowJ Senior Member (Voting Rights)

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    I thought agencies were deleting things to save server space, but mainly things 2+ years old.
     
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  9. Stuart

    Stuart Established Member

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    Two ways to hide the truth, bury it in an ever deeper pile of shit, delete it and pretend it never happened - tabula rasa.
     
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