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Final US Federal Budget Report: Victory! 6 Major Federal Wins for ME/CFS

Discussion in 'General Advocacy Discussions' started by Emily Taylor, Jan 14, 2020.

  1. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    Dear Friends,

    Throughout 2019, I reported on our advocacy gains for ME/CFS. Thank you for standing with me and our advocacy partners during a particularly turbulent year while we fought for ME/CFS in Washington D.C.

    Today, with this final FY20 budget update, I’m so happy to report that our tenacity paid off! We achieved unprecedented, bipartisan victories for ME/CFS research!

    These six federal victories (outlined below) represent a true shift in Congress. As you know, Congress has the power to control spending and create policy. Thanks to our collective ME/CFS advocacy efforts, 11% of Congress is an ally and will help us create real outcomes at federal agencies (e.g. Centers for Disease Control, National Institutes of Health). These agencies are charged with implementing the policy and funding that our friends in Congress dictated this year. These victories can and will change lives.

    When I started ME/CFS advocacy work in 2016, we were fighting an uphill battle against misinformation and many leaders didn’t think this disease was real. But now, every member of congress we’ve contacted and their staff acknowledge the reality of “America’s hidden health crisis.” Solve M.E. Advocacy Day participants, board members, and I have attended more than 500 face-to-face Congressional meetings in three years, and these meetings have made an impact.

    I am honored to have led us to this place as part of Solve M.E. and together we should take a moment to celebrate this collective victory. I’m filled with hope and eager to continue our work in Washington, DC. Let’s kick off 2020 with great momentum. Together, we are unstoppable.

    See you in D.C.,

    Emily Taylor
    Director of Advocacy and Community Relations
    Solve M.E.




    6 ME/CFS Congressional Victories from 2019

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    New Budget, New Funding, and New Deadlines
    With the President’s signature on H.R. 1865 and H.R. 1158, the 2020 federal budget is now finalized – totaling a record-breaking $2.75 trillion.
    Here’s what the 2020 budget means for ME/CFS:

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    $350 million Defense Research Program now open for ME/CFS!

    After two years of hard work, Solve M.E. has successfully added ME/CFS as an eligible topic area for the Peer Reviewed Medical Research Program (PRMRP). This program will receive $350 million of funding in 2020 which ME/CFS researchers can now apply to receive!


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    The clock is ticking for HHS to act on ME/CFS

    In one of its most aggressive actions on behalf of ME/CFS, Congress instructed the Department of HHS to submit a plan within 90 DAYS that addresses 1) the crisis in ME/CFS clinical care, 2) accelerating drug development, and 3) facilitating improved interagency collaboration.

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    Advocates preserve $5.4 million for CDC research and education programs

    Despite administration recommendations to eliminate the CDC’s work on ME/CFS, our advocacy efforts preserved
    $5.4 million for 2020 to fund the Multisite Clinical Assessment of ME/CFS (which recently expanded into pediatric study) and continued online medical education efforts for medical professionals.

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    Congress elevates ME/CFS guidance to the Director level of NIH

    In the 2020 federal budget, Congress directly issued guidance to the office of the NIH Director to expand ME/CFS efforts including 1) new disease specific funding announcements, 2) an initiative to reach consensus on the ME/CFS case definition, and 3) mechanisms to incentivize researchers to enter the field.

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    Senate Unanimously passes ME/CFS Resolution

    On May 23, 2019, the U.S. unanimously adopted S. Res 225 supporting the goals of International ME/CFS Awareness Day. This legislation is the first action exclusively about ME/CFS adopted by Congress since 1989.


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    PCORI extended for 10 years with $3.3 billion

    Patient-Centered Outcomes Research Institute (PCORI) is a biomedical research powerhouse, dedicated to putting patient needs at the center of science. Solve M.E. is proud to be part of the “Friends of PCORI” coalition, and expects ME/CFS research to thrive in this new chapter of PCORI.


    Keep Congress Fighting for ME/CFS!

    The record breaking 2020 Federal budget included more action for ME/CFS than ever before. 64 members of Congress answered our call to action. Let’s make sure to thank them for their support.
     
    boolybooly, Frankie, JohnM and 34 others like this.
  2. Emily Taylor

    Emily Taylor Senior Member (Voting Rights)

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    whoops! My apologies, I should I have clarified in the title - this is the final report for FY20, which was signed into law on Dec. 20th.

    Already getting started on FY21!
     
    Ron, ukxmrv, Aroa and 16 others like this.
  3. Milo

    Milo Senior Member (Voting Rights)

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    Thank you so much for your hard work @Emily Taylor and team! you have been consistent in advocacy and in offering opportunities for researchers to advance research and funding for all of us. I look forward to participate in the patient registry.
     
    Frankie, ahimsa, Ravn and 16 others like this.
  4. strategist

    strategist Senior Member (Voting Rights)

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    Very nice
     
    Sunshine3, rvallee, Kitty and 6 others like this.
  5. Sean

    Sean Senior Member (Voting Rights)

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    :)
     
    rvallee, Kitty, MeSci and 2 others like this.
  6. rvallee

    rvallee Senior Member (Voting Rights)

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    Ball's in his court now. He said he had to be instructed to specifically spend money and now he was, along with an extra $2B to spend.

    I'm still expecting he will drop it yet again but I'm curious what excuse will be given next. Worst case it plays a significant role in future class action lawsuits, but this is a very good crop of victories overall, money well spent.
     
    Sunshine3, Ron, Webdog and 2 others like this.
  7. ahimsa

    ahimsa Senior Member (Voting Rights)

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    @Emily Taylor - Is there any additional information on this plan that the Dept. of HHS is required to submit?

    When did the 90 days start? What day is the deadline? Who in Congress (if anyone) is tasked with enforcing delivery and/or execution of this plan?

    Just wondering how things work. Thank you for the update and for all your hard work!
     
    Aroa, rvallee and Trish like this.
  8. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    Why would he not act upon guidance from Congress? Is it an issue he has with our patient community or is there more congressional pressure needed. I don't understand what you are implying.
     
  9. rvallee

    rvallee Senior Member (Voting Rights)

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    Most likely internal resistance. NIH director is not a dictator, there are many competing interests and although people seem to exempt it when it comes to us, everyone who works in research funding understands opportunity cost, in the minds of many it's: "if you spend X on ME/CFS then you're not spending X on a real priority (like mine)".

    The way those budgets usually work is people work their way through the organization and submit their proposals. It's also notable that it is the National Institutes of Health, plural. It's a large organization with many silos, each with their own priorities and none of which care about us. The director plays a role but will rarely unilaterally direct a project to be done because he wants to, it's more dependent on there being support within the organizations than whatever the director wants.

    It's basically guaranteed that at every step in the process there is at least one, if not several, loud-mouth who will rant about as angrily against ME not being a real disease as I personally rant about the BPS ideology. That makes any decision to fund ME controversial as it creates internal tensions and turf wars, bad politics. There's no telling when any significant funding would pay off and it could very likely cost anyone supporting this their future within the NIH. It's very hard to go against the grain when it is held with near religious certainty.

    To most physicians ME is not a medical problem and that's the end of discussion. From this, it's actually a good thing to fight it tooth and nail the same way physicists would fight against using astronomy resources to fund astrology "research".
     
    Sunshine3 likes this.

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