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Restore CDC funding for CFS

Discussion in 'Action Alerts and Advocacy' started by gretac, Aug 9, 2015.

  1. gretac

    gretac

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    The Massachusetts CFIDS Association sent out this alert that the Senate Appropriations Committee has completely eliminated funding for CFS research at the CDC. Email links and text that can be copied and pasted are included in their post, copied below.
    I found it easiest to copy the Subject heading into each email as I opened its link, then to copy the body of the text into each email (with appropriate edits), and send them off.
    I also sent the one to Elizabeth Warren, even though I'm not a Mass. constituent, because she's on an appropriate related committee, and can be a strong and fierce advocate!
    It took me less than 1 minute to do all of that (although I spent more time on it because I researched the background a bit and added some to my letter).

    Here's the info from Mass CFIDS, and here's the link to their website in case the copied links below don't work: http://www.masscfids.org/advocacy/583-restore-funding-for-cdcs-mecfs-research

    Massachusetts CFIDS/ME & FM Association News

    Restore CDC Funding!
    The funding for the CDC ME/CFS program has been cut to ZERO in the senate version of the budget appropriations bill. If this stands, a major research program (the “multi-site study”) is threatened. While most of the CDC disease areas are level-funded, under the Senate's version of the appropriations bill ME/CFS will receive NOTHING.

    We have only a few days to get this reversed. When the senators return from their August vacation, the appropriations bill will go to conference committee, where, with enough support, the funding can be restored. WE NEED TO MAKE THIS HAPPEN.

    We need to flood the in-boxes of the four staffers who work on this bill:

    Laura_friedel@appro.senate.gov
    Chol_pak@appro.senate.gov
    Alex_Keenan@appro.senate.gov
    Lisa_bernhardt@appro.senate.gov

    If you live in Massachusetts, please send a copy of your letter to Sen. Elizabeth Warren, who is a member of the Senate Committee on Health, Education, Labor, and Pensions, using this form: http://www.warren.senate.gov/?p=email_senator.

    Your note can be brief and simple. To make the most impact, use the subject line “Please restore CDC funding for Chronic Fatigue Syndrome”.

    Here’s a sample letter (you can copy this text right from this web page); feel free to customize it!

    Subject: Please restore CDC funding for Chronic Fatigue Syndrome

    I understand that the Senate Appropriations Committee has recommended that funding for the CDC’s programs for Chronic Fatigue Syndrome be terminated as of 2016.

    I am a patient (family member of a patient/caregiver for a patient) with Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis or ME/CFS. The Institute of Medicine has just issued a major report on this “serious, chronic, complex, multisystem disease” citing the devastation on the lives of the 836,000 to 2.5 million Americans who suffer from this devastating disease, the $20 billion annual cost to society, and the enormous need for more research which can lead to better treatments and a cure. We need MORE money for research, medical education, and information for patients and their families, NOT a termination of support.

    I urge you to reinstate the $5.4 million funding for the CDC/CFS programs immediately.

    Sincerely,
    [Your name]
    [Your email address]
    [Your USPS Address]
     
    Mary likes this.
  2. Bob

    Bob

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    gretac likes this.
  3. taniaaust1

    taniaaust1 Senior Member

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    Maybe that is what some people want. that study not to go ahead? I don't trust these government departments and people behind them or backing them. It's no surprise to me that this has been done. Governments always have not liked funding our research.

    I really think right now there are powerful people trying to bury ME/CFS..

    Can anyone figure out another reason why they have completely cut off the funding for us esp when the IOM stuff showed we need more?
     
  4. gretac

    gretac

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    Oh, thanks! Sorry to duplicate threads - I didn't see anything on a quick (and undoubtedly processing-impaired) scan through the threads. At any rate, lots of folks are responding to the Mass CFIDS Assoc. email; they've already been contacted by one of the appropriations committee staffers, and have an appointment with Elizabeth Warren's office soon. So great response being generated!
     
    Bob likes this.
  5. gretac

    gretac

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    Yeah, you'll see other similar sentiments on the thread that Bob linked us to, above. But, really? I don't get how it's in their best interest to have us all disabled, for anyone's sake! Not that that stops people making poor decisions in no one's best interest!
     
    Last edited: Aug 9, 2015
    WillowJ likes this.
  6. Bob

    Bob

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    No problem :) I was just pointing it out so people didn't miss the other thread.

    That's great! Thanks very much for the update.
     
    gretac likes this.
  7. gretac

    gretac

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    Yes, I appreciate knowing it's there!
    I'll bounce over to that one from now on - thanks! :)
     
    Bob likes this.
  8. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    Some of us are guessing they were looking for things to cut, saw "Chronic Fatigue Syndrome", and thought it didn't sound important (unaware of the IOM report, the FDA report, anyone who has it, or anything other than the name). That is nothing more than a guess, though.
     
    Bob, Valentijn, taniaaust1 and 2 others like this.
  9. Ecoclimber

    Ecoclimber Senior Member

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    Didn't know there were two threads on here so I'll post this.

    To get a better understanding of what's going on, I did a bit of research and stumbled upon this site that explains the budgeting issues for fiscal 2016 that might put things in a realistic perspective for everyone.

    NIH Riding High; Cuts, Cuts, and Cuts Elsewhere


    AHRQ
    Funding for the Agency for Healthcare Research and Quality (AHRQ) is completely gutted, starting October 1, 2015. (House Appropriations)
    AHRQ would be cut by 35% in FY 2016. (Senate Appropriations)

    CDC
    The Centers for Disease Control and Prevention faces a cut of $245 million. (Senate Appropriations)

    NIH
    The House Appropriations Committee plans to boost NIH funding by $1.1 billion, while Senate Appropriators upped the ante by providing an increase of $2 billion.
     
    gretac likes this.
  10. taniaaust1

    taniaaust1 Senior Member

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    good guess and does sound probably about right
    "oh those "fatigue" people don't need research, everyone gets tired sometimes"....
     
    gretac and Bob like this.
  11. Bob

    Bob

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    CDC funding is restored.
    https://www.facebook.com/CFIDSAssn/...al&utm_source=twitter.com&utm_campaign=buffer
     
    Valentijn, gretac, mango and 3 others like this.
  12. worldbackwards

    worldbackwards A unique snowflake

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    Valentijn, gretac, Scarecrow and 2 others like this.
  13. *GG*

    *GG* Senior Member

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    As Hillary would say. What difference does it make? Especially is it is used on crap studies!

    GG
     

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