Send a letter to Reinstate CDC Funding for ME/CFS

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We at the Solve ME/CFS initiative are calling for the CDC to reinstate funding for ME/CFS and we need your help!
Please act now! The $5.4 million in CDC funding for ME/CFS has been stricken from the Senate’s version of the 2016 federal budget. As you can see from the graphic below, ME/CFS was the only disease to be reduced to $0.
CDC-Funding-Graphic-for-Social
You have an opportunity to directly impact federal funding for ME/CFS by sending this message to the four key staff members who serve the Senators on this budget committee.
Please take a moment to send them an email asking that the funds be reinstated immediately. We have posted a draft letter here for you to use. Feel free to revise as it suits you but note that time is of the essence. We need to have the emails sent within the next week to have any chance at reversing this decision and preserving our much-needed funding.
CAMPAIGN IS SUCCESSFULLY CONCLUDED – THANK YOU FOR YOUR SUPPORT!

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20 thoughts on “Send a letter to Reinstate CDC Funding for ME/CFS”

  1. My emails have been sent but I want to take a moment to thank ME ACTION for providing this easy format and to solve me/cfs for alerting us.

  2. I would be very happy to sign, but I tried to edit the letter to clarify that while I am not personally living with the disease, a friend is… And was unable to edit it in any way. Suggestions?

    1. Ihad the same problem working on my desk top mac- but was able to copy and paste letter – in my notes. Then edited it – then copied and pasted edited version over original letter – it worked.

      1. Hi Marga, So you weren’t able to edit the text but copy/paste worked? That’s no good! I’ll look into the problem and see what we can do.

        1. Dear Rachael, GOOD JOB ALL OF YOU at ME ACTION re: getting our CDC money back. Now let’s see to it that it’s increased next year. marcie myers

  3. Naomi, I’m sending you an email as well to get to the bottom of this. Two questions. Are you on a tablet or phone? And, what happened when you clicked on the text to try to edit?

    1. Hi Lisa! If you were able to fill out and send the form, then the email automatically sent to the appropriate emails. No need to send an email.

  4. my edit:
    I had just earned my Biochemistry degree when I was stricken ill–I could have been doing scientific research, rather than desperately hoping for it. But instead I’ve spent the 18 years since mostly in bed, unable to work.

  5. I rewrote my reply into a shorter and more active voice. Permission is given to use whatever anyone feels is appropriate.
    _________________________________________________
    I am writing to ask you to reinstate the Centers of Disease Control funding for Chronic Fatigue Syndrome (ME/CFS) in the Senate Budget.
    The CDC budget for Chronic Fatigue Syndrome research under Emerging and Zoonotic Infectious Diseases on Page 59 of the Senate Budget has been stricken from the 2016 appropriations bill. The Senate should allocate much much more than the requested $5.4 million into the 2016 budget because 2.5 million Americans suffer from this devastating disease which causes an economic cost of $17 to $24 billion annually to our country.
    The prestigious Institute of Medicine of the National Academies published a landmark report on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome on Feb. 10 of this year and unequivocally established that Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is “a serious, chronic, complex, multi system disease”. This disease can severely disable those afflicted. 25 percent are house or bed-bound.
    I am one of those Americans who has had their life and livelihood destroyed by this illness. The vast majority of us are not well enough to march on Capitol Hill to demand equitable funding from our government, but rest assured I can vote via absentee ballot.
    As a member of the Senate Subcommittee, I urge you to reinstate CDC funding immediately. You have an opportunity to make an enormous difference in the future of 2.5 million Americans, and save the country 10’s of billions of dollars annually. Thank you.

  6. I’ve signed and tried to send the letter a few times this morning and it doesn’t seem to be going through. Is there something wrong with the system or link?

    1. Hi Dafna, Let’s figure this out! Are you getting an error message at all or is it just not doing anything when you click Sign?
      What device are you using? Feel free to email [email protected] if that’s easier than commenting here!

  7. I completed the steps above on Wednesday, and got the confirmation message that my email had been successfully sent to 1 recipient. I assumed that was because it was an email “group” in the “To” Field. However, a friend of mine (ME Ally) completed the steps last night (Thursday) and sent me a picture of her confirmation message that showed 4 recipients. Do you know if I need to re-send my initial email from Wednesday? I am worried it might not have gone to all necessary recipients. Thanks so much

    1. You may have received fewer confirmations because you are in different states and therefor have different political representatives.

  8. Thank you for making our advocacy easier! I am forwarding this to family and friends asking them to send the email modifying paragraph 5 from the viewpoint of a patient to that of a friend/relative. My husband sent it and easily made the change using your template.

  9. I’m attaching a email from my senator in response to one I sent him, although I am not sure through what organization it was created.
    From Bob Latta, Ohio
    Dear Andrea,
    Thank you for contacting me in support of research funding for rare diseases such as Chronic Fatigue Syndrome. In order to make sound voting decisions, I need to hear from the constituents in the Fifth Congressional District. I appreciate you taking the time to contact me with your thoughts on this issue, as I know how important it is to you.
    Among the 10,000 known diseases, 7,000 of them are considered rare, with treatments for only 500. In the 114 th Congress, I have supported legislation that would work towards finding cures for these diseases. I am a cosponsor of H.R. 6, the 21 st Century Cures Act, which was introduced by Representative Fred Upton (R-MI) on May 19, 2015 and was passed by the House of Representatives, with my support, on July 10, 2015 by a vote of 344-77. It now awaits action in the Senate. The purpose of this legislation is to aid in modernizing and personalizing health care while encouraging greater innovation, supporting research and streamlining the system to deliver better, faster cures to more patients. It is a culmination of months of bipartisan efforts within the House Energy and Commerce Committee to address the pressing health care concerns of patients and the entire health care industry. The legislation includes several provisions that: incorporate the patient perspective into the drug development process; foster the development, qualification, and utilization of biomarkers; modernize clinical trials; facilitate the development of the next line of antibiotics and a placeholder for providing incentives for repurposing drugs for serious and life-threatening diseases and disorders; and provide clarity for developers of software products used in health management and medical care. H.R. 6 would continue the work of the Committee’s Bipartisan Telemedicine Working Group, of which I am a member, by working to adapt technologies into our health care system in ways that promote greater quality care and fiscal integrity. Section 3021 of the legislation would support these efforts by requiring specific actions of government bodies identified as critical to developing a long-term solution to this problem. Please be assured that should this legislation return to the House Floor or should other legislation regarding research for rare diseases come up for a vote, I will be sure to keep the thoughts and views you have expressed to me in mind. Thank you again for contacting me on this issue.
    It is my great honor to serve as your Member of Congress and it is my number one priority to represent you and the best interests of the Fifth Congressional District. Please do not hesitate to call, write, or e-mail me in the future with any of your concerns or questions. For federal-related issues, you may reach my Washington, D.C. office by phone at (202) 225-6405, or my District office at (800) 541-6446 for constituent services. I encourage you to visit my website at http://latta.house.gov where you can sign up for my e-newsletter and text message updates. The website also provides links to my YouTube, Facebook, Twitter, and Flickr pages, as well as my blog, all of which will help bring my work in Washington, D.C. home to you.
    Sincerely,
    Bob Latta
    Member of Congress

  10. In looking at the list from which we were slashed to “zero”, I noticed that we still fall under Infectious Diseases. That would not be correct. Does anyone know of any plans to get us out of The Office of Women’s Health and into another more appropriate division and what that would be? As ME/CFS is a neuro-endocrine-immune disease affecting many systems…. marcie

    1. Hi Marcie- ME/CFS is under Infectious Diseases at CDC, and under the Office of Women’s Health at NIH. You can read about our efforts to get ME/CFS research moved to NINDS at NIH at http://meaction.net/2015/08/17/lobby-congress-for-nih-funding/. NINDS is the National Institute of Neurological Disorders and Stroke, which includes a lot of multi-system diseases such as Multiple Sclerosis and autism, so we think it would be an appropriate place to house ME/CFS research.
      Thanks for your support!

  11. Thank you for the formatting. It makes all the difference in the world for me in trying to advocate. If I have to put together an address, titles, format, and means of transmission, what’s left of my mind gets crazy confused and in the end there exists nothing but my consumption of the day’s ration of thought and action.

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