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Impact of proposed NIH and CDC cuts on ME Research - and tips on advocacy

Discussion in 'Action Alerts and Advocacy' started by AndyPR, Apr 12, 2017.

  1. AndyPR

    AndyPR Senior Member

    http://www.meaction.net/2017/04/10/impact-of-proposed-nih-and-cdc-cuts-on-me-research/

    Advocacy tips section
     
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  2. Emily Taylor

    Emily Taylor

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    Anne, Jo Best, Izola and 2 others like this.
  3. Anne

    Anne Senior Member

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    Jennifer J and Webdog like this.
  4. Emily Taylor

    Emily Taylor

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    Hi Anne -

    I'm so pleased that you tagged me. Sometimes, I get so busy with all the work here at Solve ME/CFS Initiative that I forget to check PR. We do our best to send updates frequently on our research and advocacy work in our e-mail newsletters - but I am very glad you reached out and asked directly.

    I'm afraid the answer is... complicated. But I am happy to share what I have learned through many congressional meetings and contacts.

    CDC - definitely under threat. The CDC receives money from many avenues. Currently, the only ME/CFS specific funding in the federal appropriations process goes to the CDC. As long as that line item stays funded (and we worked very hard to make sure it does!), the CDC will continue to receive about $5.4m per year for ME/CFS related work. That being said - the CDC overall is facing very steep cuts by the elimination of the Prevention and Public Health Fund (PPHF) and we've heard rumors that a number of programs are facing elimination and restructuring. We cannot say for sure whether or not ME/CFS will be one of those programs. We have strong advocates for our work within the CDC and they have assured us the multi-site study is not threatened this year. At this time, not a single budget bill for FY 18 has been released - so we cannot confirm that.

    NIH - unlikely threat. The NIH enjoys more bi-partisan support than nearly any other agency. Chairman Tom Cole, the man who controls the budget for NIH, said its programs are "are every bit as important for the national defense and national security of the American people as the Pentagon." Every staff member and committee staff member from both sides of the aisle that I have spoken with affirms that any proposed cuts to NIH will be fought and voted down. I was on a conference call with a key majority staffer for Chairman Cole's committee and she confirmed that the NIH cuts would be fought from both sides.

    Again, to reiterate, there has still not been a single budget bill released for FY 18, so we will have to wait for real legislation before we know for sure.

    Hope this helps!

     
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  5. Anne

    Anne Senior Member

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    Thank you so much, @Emily Taylor ! And thank you for your work!

    I'll be sending a donation to SMCI to support everything you, Carol, Zaher and your colleagues are doing. We can tell you are going places!
     
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  6. Anne

    Anne Senior Member

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    It seems @Emily Taylor was right and the CDC ME/CFS budget is now under immediate threat - again.

    From SMCI:

    Take action! Restore ME/CFS Funding now!
    Last week, the House Appropriations Subcommittee on Labor-HHS finally released their vision of federal spending for Fiscal Year 2018 in H.R. 3358. We are disheartened to share that the accompanying committee report, again, zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC’s Center for Emerging and Zoonotic Infectious Diseases. Now, we turn to the Senate to restore the funding for these critical research, education, and awareness programs.

    To push back against this reduction, we’ve made it very easy. Send a message to your members of congress.

    SMCI asks all US ME patients to take action:
    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00009&cid=
     

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