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Solve ME/CFS: "Tell Congress To Give ME/CFS Research a Fighting Chance!"

Discussion in 'Advocacy Action Alerts' started by Andy, Feb 17, 2018.

  1. Andy

    Andy Committee Member

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    https://solvecfs.secure.force.com/actions/kwac__takeaction

     
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  2. MErmaid

    MErmaid Guest

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    Done!! :emoji_grinning:

    It took just 2 minutes to send a message to my local representatives!!! :emoji_clap:
     
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  3. Dancer

    Dancer Established Member

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    Done. I so appreciate Solve ME/CFS making it easy to do. Nothing to look up. Just added a quick personal note and hit send.
     
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  4. MErmaid

    MErmaid Guest

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    This is an urgent matter!! The 2019 US Presidential CDC Budget for CFS is $0. We need to prioritize ME Research in America!

    If you are a US resident then please take 2 minutes of your time to send a message to your representatives. If you have family and friends who are US residents, please ask 3 of them to take action today!

    Thank You!!!

    MErmaid
     
    Last edited: Feb 17, 2018
    Joh and Esther12 like this.
  5. Webdog

    Webdog Senior Member (Voting Rights)

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    Just FYI, I couldn't get the "Take Action" button to work. Tried 3 different browsers (Firefox, Safari, Chrome).

    takeaction2.png
     
  6. Sasha

    Sasha Senior Member (Voting Rights)

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    There's a form that asks for your name, address, email and phone number and then a form email for you to send to your member of Congress (below). I'd guess that you should add your address at least to the email so that your Congress member can see that you're their constituent.

    Subject line: Please add Chronic Fatigue Syndrome (ME/CFS) to the CDMRP

    [Add personal message here if you want.]

    I am writing to you regarding the upcoming FY 19 budget and the Peer Reviewed Medical Research Program (PRMRP) which provides resources for biomedical research “enhancing the health and well-being of military Service members, Veterans, retirees, and their family members.” Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis or ME/CFS, was an eligible topic area in 2011 but was ultimately removed despite a clinical presentation that is identical to Gulf War Illness and an estimated impact on 15,000 military servicemen and women.

    As you may know, ME/CFS is a complex disease with no known cause, treatment, diagnostic tool, or cure. The CDC estimates that up to 2.5 million Americans suffer from ME/CFS, and patients have lower quality of life scores than those with lung cancer, stroke, and rheumatoid arthritis. Studies show that ME/CFS costs the U.S. economy up to $51 billion per year.

    There are risk factors unique to military service that put our service members at higher risk for developing ME/CFS, such as living in extreme climates and environments, extreme physical exertion, exposure to foreign viruses, toxic chemicals and neurotoxins.

    Given the significant health, safety and economic impacts of ME/CFS on military servicemen and women, and the unique risks that military servicemen and women are exposed to, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) should be made an eligible research topic in the Peer- Reviewed Medical Research Program (PRMRP) targeted for biomedical research funding through the U.S. Department of Defense in Fiscal Year 2019.

    Please submit a written request to the Appropriations Subcommittee on Defense to request the inclusion of ME/CFS in this program.​
     
  7. Forbin

    Forbin Senior Member (Voting Rights)

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    When I press the "Take Action" button, it simply opens a new window identical to the one I just clicked on. It does that so seamlessly that I had opened about 6 new windows before I realized what I was doing. I tried turning off my ad-blocker, but that didn't help.

    Perhaps someone could post the web address of the the page you go to when you press "Take Action" and that would work.
     
  8. Sasha

    Sasha Senior Member (Voting Rights)

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  9. Webdog

    Webdog Senior Member (Voting Rights)

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  10. Forbin

    Forbin Senior Member (Voting Rights)

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    There's an overview of the CDMRP here: https://www.ncbi.nlm.nih.gov/books/NBK424509/#sec_000011

    It seems to be a program by which Congress funds the Department of Defense to manage various medical research programs which are contracted to outside research groups. Some of this is closely related to the military, such as the study of Gulf War Illness (Nancy Klimas has received CDMRP grants), but other programs - which I assume are also contracted by the DoD - do not have a specific connection to the military other than that military members (and their families) are as affected as is the general public.

    So it seems to be, in part, a sort of a mechanism by which Congress can direct money towards research into specific illnesses on the grounds that these illnesses affect military members and their families. I guess the only illnesses which would be excluded under that criteria would be... none.

    [ I don't think it would be necessary, but, if you're going to include a personal note, it might be useful to mention it if you or your family has any connection to the U.S. military. ]

    Here are the programs they were funding in 2016:

    BOX S-22016 CDMRP Research Programs
    • Alcohol and Substance Abuse
    • Amyotrophic Lateral Sclerosis
    • Autism
    • Bone Marrow Failure
    • Breast Cancer
    • Defense Medical Research and Development*
    • Duchenne Muscular Dystrophy
    • Epilepsy
    • Gulf War Illness
    • Joint Warfighter Medical*
    • Lung Cancer
    • Military Burn
    • Multiple Sclerosis
    • Neurofibromatosis
    • Orthotics and Prosthetics Outcomes
    • Ovarian Cancer
    • Parkinson's Research
    • Peer Reviewed Alzheimer's
    • Peer Reviewed Cancer (13 topics)
    • Peer Reviewed Medical (39 topics)
    • Peer Reviewed Orthopaedic
    • Prostate Cancer
    • Psychological Health & Traumatic Brain Injury*
    • Reconstructive Transplant
    • Spinal Cord Injury
    • Tick-Borne Disease
    • Trauma Clinical Research
    • Tuberous Sclerosis Complex
    • Vision
    *
    Managed on behalf of the DoD Defense Health Agency.

    SOURCE: CDMRP, 2015f.


    From: Summary

    [​IMG]
    Evaluation of the Congressionally Directed Medical Research Programs Review Process.
    National Academies of Sciences, Engineering, and Medicine; Health and Medicine Division; Board on the Health of Select Populations; Committee on the Evaluation of Research Management by DoD Congressionally Directed Medical Research Programs (CDMRP).
    Washington (DC): National Academies Press (US); 2016 Dec 19.
    Copyright 2016 by the National Academy of Sciences. All rights reserved.
    NCBI Bookshelf. A service of the National Library of Medicine, National Institutes of Health.
     
    Last edited: Feb 18, 2018
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