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USA: URGENT ADVOCACY ACTION! House FY20 Funding Requests

Discussion in 'Advocacy Action Alerts' started by Emily Taylor, Mar 22, 2019.

  1. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Los Angeles, CA
    We need YOU to contact your U.S. Representative. Your voice makes all the difference.
    Our champions, Congressmembers Lofgren and Eshoo, are currently asking for support for TWO requests that can increase funding for ME/CFS research!
    1. Requesting $9.9 million for ME/CFS programs at the CDC (Labor-HHS committee)
    2. Adding ME/CFS to the Peer-Reviewed Medical Research Program (Defense committee)
    Please contact your member of the House of Representatives TODAY and ask them to sign-on to these efforts.

    Click Here to Take Action

    Advanced Advocates! Check out the Action Alert webpage to take your advocacy to the next level.
    Dolphin, ahimsa, rvallee and 9 others like this.
  2. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Los Angeles, CA
    Links to the letters:
    letter to the Labor-HHS Committee
    letter to the Defense Committee

    Sample Request E-mail:
    Support Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in FY2020

    Dear Representative XXXXX,

    I am writing to ask you to co-sign two appropriations request letters currently being circulated by Congressmembers Lofgren and Eshoo.

    As a constituent impacted by this devastating illness, I care deeply about improving and accelerating the government response that has been called "America's Hidden Health Crisis" by the Centers for Disease Control and Prevention (CDC).

    The first is to Labor HHS in support of $9.9 million for ME/CFS programs at the CDC and for accompanying report language. The second is to Defense requesting the inclusion of report language adding ME/CFS to the list of Congressionally Directed Topic Areas in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).

    As you may know, ME/CFS is a chronic, complex, multi-system disease characterized by profound fatigue, cognitive impairment, sleep disorders, autonomic dysfunction, chronic pain, and other symptoms often exacerbated by exertion of any sort. ME/CFS goes undiagnosed in about 90 percent of patients.

    Increased funding would allow the CDC to continue existing ME/CFS programs as well as conduct an epidemiological study, improve medical education on ME/CFS, and develop an Extension for Community Health Outcomes (ECHO) program.
    Much needed funding, focused research, reliable data, and improved medical education will strengthen support for and improve the lives ME/CFS patients across the country. We hope you will join us in urging the Appropriations Committee to provide increased funding for ME/CFS and to include ME/CFS in PRMRP’s authorized topic areas.

    Priscilla Kim in Rep. Lofgren’s office at Priscilla.Kim@mail.house.gov, or x53072. The deadline to sign on is COB, Wednesday, March 27th.


    Read the Labor-HHS request here: https://solvecfs.org/wp-content/uploads/2019/03/FY20-Letter-ME∕-CFS-Funding-Request-Labor-HHS.pdf

    Read the Defense request here: https://solvecfs.org/wp-content/upl...ter-ME_CFS-Language-Request-Defense-final.pdf
    Dolphin, rvallee, Wonko and 6 others like this.
  3. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Thanks for your efforts on this @Emily Taylor . May I ask why the deadline to sign on is Wednesday, March 27th? This is right before your campaign in April.....
    Wonko, Ron, andypants and 1 other person like this.
  4. Three Chord Monty

    Three Chord Monty Established Member (Voting Rights)

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    I'm sorry...is there a reason why we would want the CFS group at CDC to have more money?
    WillowJ likes this.
  5. duncan

    duncan Senior Member (Voting Rights)

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    Oh, I don't know that I'd lead with "profound fatigue". Isn't part of the effort educating Congress - as well as practically everyone else - that ME/CFS is not chronic fatigue? By listing it first, you're arguably re-enforcing the wrong message. I am fearful some individuals may stop reading right then and there.

    I'm more likely to throw $'s at a catastrophic, multisystem disease than I am at very tired people. That is what I'd speak to.
  6. ahimsa

    ahimsa Senior Member (Voting Rights)

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    Oregon, USA
    Bumping this so more folks will see it. Deadline is Wednesday, March 27.

    If possible, ask your friends and family to contact their US Congress representatives, too! I will be working on email to several family members later tonight.

    I sent email to my Congress rep and then did a follow-up call this afternoon. I also tweeted about it!


    PS. I changed the wording of the template when I sent my email.

    I really appreciate having a template so I did not have to start from scratch. But I do think that using your own words often makes a stronger impact.
    Sly Saint, petrichor, Andy and 4 others like this.
  7. Emily Taylor

    Emily Taylor Established Member (Voting Rights)

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    Los Angeles, CA
    Thank you everyone for your support! We just heard we had 43 bipartisan co-signers for Labor-HHS and 42 for Defense. Great work!
    Sunshine3, ahimsa, rvallee and 7 others like this.
  8. MeSci

    MeSci Senior Member (Voting Rights)

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    Cornwall, UK
    Source: PR.com / SMCI

    Date: April 3, 2019

    URL: https://www.pr.com/press-release/781494

    'America's Hidden Health Crisis' Heads for Congress on April 3rd Demanding Action for Millions with ME/CFS
    Hundreds of severely ill people with ME/CFS, caregivers, allies, scientists, and clinicians from across the country are heading for Capitol Hill on April 3rd to urge Congress to give us hope, and fully fund ME/CFS medical research and education programs. The CDC has called ME/CFS 'America's hidden health crisis.'

    Washington, DC, April 03, 2019 --(PR.com)-- Funding for ME/CFS has been tragically neglected for decades, historically receiving $5 million per year, which falls drastically short of the parity of $250 million per year, the amount of funding ME should receive based on its disease burden, meaning the number of people sick and severity of the disease, according to research.

    More at link
    petrichor, ahimsa, rvallee and 2 others like this.

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