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U.S. Congress Introduces Resolution for ME

Yesterday, the U.S. Congress introduced a resolution in the Senate to show support for research and medical education for Myalgic Encephalomyelitis (ME).

After years of advocacy by the #MEAction Congress team, the Solve ME/CFS Initiative, Massachusetts CFIDS/ME & FM Association, and thousands of patients and allies, Senator Edward Markey (D-MA) introduced S.Res.508, the first ME/CFS resolution since 1994! (View the bill on Congress.gov and in the Congressional Record.)

#MEAction and its partners were also instrumental in convincing U.S. Representatives Paul Gosar (R-AZ04) and Dwight Evans (D-PA02) to formally request a U.S. House of Representatives hearing on the ME/CFS clinical care crisis and the U.S. Government’s response to it.

The tri-partisan resolution is co-sponsored by Senators Susan Collins (R-ME), Angus King (Independent- ME) and Chris Van Hollen (D-MD).

Share this news and ask your Senator to co-sign this resolution!

The SR-508 resolves that the Senate:

(1) supports the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day;

(2) recognizes and affirms the commitment of the United States to

(A) discovering the cause of, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

(B) improving the availability and quality of medical care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

(3) encourages

(A) the National Institutes of Health and other Federal agencies to work with experts, stakeholders, and individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to—

(i) consider the recommendations of the National Academies of Sciences, Engineering, and Medicine relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

(ii) support research to discover the cause of, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

(B) the medical community to enhance practitioner training to provide appropriate and accessible care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

There are #MillionsMissing from ME, and thankfully, our elected officials are in our corner ready to put ME in the national spotlight! A big thank you to our government leaders who care about people living with #MECFS!

Share this news and ask your Senator to co-sign this resolution!

 

Full text of Senate Resolution 508: 

SENATE RESOLUTION 508—SUPPORTING THE GOALS OF MYALGIC ENCEPHALOMYELITIS/ CHRONIC FATIGUE SYNDROME INTERNATIONAL AWARENESS DAY

Mr. MARKEY (for himself, Mr. KING, Mr. VAN HOLLEN, and Ms. COLLINS) submitted the following resolution; which was referred to the Committee on Health, Education, Labor, and Pensions: S. RES. 508

Whereas the Health and Medicine Division of the National Academies of Sciences, Engineering, and Medicine (referred to in this preamble as ‘‘HMD’’), formerly known as the Institute of Medicine, has found Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (referred to in this preamble as ‘‘ME/ CFS’’) to be ‘‘a serious, chronic, complex, and systemic disease that frequently and dramatically limits the activities of affected patients’’;

Whereas between 836,000 and 2,500,000 individuals of all ages, races, and sexes in the United States are believed to be afflicted with ME/CFS, with millions more afflicted by ME/CFS worldwide, and the vast majority of individuals with ME/CFS are undiagnosed or misdiagnosed;

Whereas ME/CFS is approximately 4 times more prevalent in women than in men; Whereas ME/CFS is a chronic disease that persists for decades and leaves 1⁄4 of individuals with ME/CFS housebound or bedbound, often for years;

Whereas 50 to 75 percent of individuals with ME/CFS cannot work or attend school;

Whereas medical expenses and lost productivity related to ME/CFS cost the economy of the United States $17,000,000,000 to $24,000,000,000 annually;

Whereas the cause of ME/CFS is unknown, there is no diagnostic test for ME/CFS, and there is no treatment for ME/CFS that is approved by the Food and Drug Administration;

Whereas HMD has noted a ‘‘paucity of research’’ on ME/CFS and that ‘‘more research is essential’’;

Whereas individuals with ME/CFS struggle to find doctors who are willing and able to care for them and ME/CFS is included in less than 1⁄3 of medical curricula;

Whereas, in recognition of the dearth of research on ME/CFS and the profound impact that the disease has on individuals with ME/ CFS and their loved ones and caretakers, the National Institutes of Health (referred to in this preamble as the ‘‘NIH’’) is ‘‘committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition’’;

Whereas, in 2017, 11 Institutes at the NIH that participate in the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group and the Office of the Director of the NIH contributed more than $7,000,000 in grants to assist in establishing Collaborative Research Centers and a Data Management Coordinating Center to improve the coordination of ME/CFS research and help accelerate understanding of ME/ CFS;

and Whereas, in 2018, May 12 is recognized as International Awareness Day for ME/CFS and other neurological conditions:

Now, therefore, be it Resolved That the Senate

— (1) supports the goals of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome International Awareness Day;

(2) recognizes and affirms the commitment of the United States to

— (A) discovering the cause of, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

— (B) improving the availability and quality of medical care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

(3) encourages— (A) the National Institutes of Health and other Federal agencies to work with experts, stakeholders, and individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to

— (i) consider the recommendations of the National Academies of Sciences, Engineering, and Medicine relating to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

— (ii) support research to discover the cause of, and a cure for, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome;

and (B) the medical community to enhance practitioner training to provide appropriate and accessible care for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

Categories: Congress, Featured news, Politics, United States

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6 comments on “U.S. Congress Introduces Resolution for ME
  1. Mark Jaqua says:

    Finally, it seems we are getting real action going. Thank you to all those who have worked so hard to get this far.
    I attended the MEaction rally in San Francisco. Wow. It was the first time I had ever met others with ME.
    Are there any others out there in Marin or Sonoma County who would like to pressure are Congressional Representatives to support our movement? Our Congressman, Jared Huffman, did not sign the HR letter, despite my personal pleas. He has not even responded to me. I am so disappointed in him.
    I will be contacting both Senators Feinstein and Harris to sign the Senate legislation.
    Contact me if you are a constituent and want to put some pressure on.
    Thanks

  2. Mark,
    Thank you for your efforts. Dianne Feinstein did add her name and is a co-sponsor. Please send an email to congress@meaction.net and we can provide you with additional suggestions for contacting the offices of Jared Huffman and Kamala Harris. We recently met with their legislative aides in Washington DC through the Solve ME/CFS Initiative. We need the community advocacy to make a difference. Thank you again for all you are doing.

  3. Beverly Weiss says:

    Also,
    we can help try and contact other constituents in Jared Huffman’s district so that we can send a letter asking for a phone conference with his health care legislative aide… please let us know if you can follow up with us..congress@meaction.net

    1. Mark Jaqua says:

      Hi Beverly,

      Are you a Jared Huffman constituent? If so, do you wish to compare notes?

      I’ve been frustrated with his position.

      1. Jared, I work with the congress@meaction.net team. I am a Californian, but down in Pasadena. I want to suggest this, it is one thing i did when trying to find fellow constituents in my district.

        I belong to meaction California. I posted asking for anyone in the cities in my district who want to work together – in your case- to gain Congressman Huffman’s support. If you are a member or do join, please instant message me, Beverly Weiss, and i can give you the name and email of his health care legislative aide who you may want to start a friendly dialogue with.. I believe some people met with them on Solve ME/CFS Advocacy Day.

        Good luck

  4. ahimsa says:

    Update: I’ve been sending email to both my senators about once a week. Today (June 28) I got a response from Sen. Merkley saying that he and his staff are looking into this issue. I hope that means he’ll be signing on very soon.

    And I just checked and there are two new co-sponsors today, Senators Cory Booker and Rob Portman.

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