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Urgent Congressional Action! Ask your Rep. to Sign Letter for ME/CFS

URGENT Congressional Action!

Please take this opportunity to call and email your House representative today to request they sign a letter that inserts favorable language about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) into the House Appropriations Committee report for the FY19 budget.

The deadline for your representative to sign the letter is Wednesday, March 14.

U.S. House Representatives Zoe Lofgren and Anna Eshoo are sponsoring a letter again, as they did last year. We are especially pleased that the letter says the signers believe that the budget increase at the National Institutes of Health (NIH) gives the NIH the opportunity and ability to increase research funding for ME/CFS to better reflect the disease burden, and to bring funding in line with other similarly burdensome diseases.

Read the full letter here.  In brief, the proposed report language:

(1) Supports continuation of the $5.4 million ME/CFS funding for the Centers for Disease Control’s (CDC),

(2) Encourages CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers,

(3) Recommends that NIH create a strategic plan for ME/CFS research and increase the amount and types of funding,

(4) Urges the Department of Health and Human Services to devise a multi-year strategic plan. The sign-on letter states that the increases in NIH’s budget affords NIH the opportunity and ability to increase funding to better reflect the ME/CFS disease burden.

This action is a joint effort between #MEAction and the Solve ME/CFS Initiative.

Instructions for contacting your House representative: 
  1. Find your House Representative    http://www.house.gov/representatives/find/
    (Please note that this action is ONLY for the House of Representatives, not the Senate.)
  2. Prepare
    –   Familiarize yourself with the facts about ME/CFS using this Fact Sheet, which includes sources that you can send to your House representative.–   Tell your House representative the number of estimated patients with ME/CFS in your district. Go to this link. Find your state at the bottom; go to your district. Columns F and G will give you the lower and upper range of numbers of patients. If you want to include the financial impact in your district, go to columns P and Q.
  3. Contact the Office

Please try to both email and call the office. You should call the D.C. office, not the district office. Feel free to modify the letter to add personal information, but make sure to keep the description of “our ask.”

EMAIL Instructions:

Please note that 31 representatives signed the letter to the Appropriations Committee last year. (*The list of representatives who signed the 2017 letter is at the bottom of the article.)

If your representative was one of them, please include this note of thanks at the end of the first paragraph in the email: I appreciate your support in signing the letter last year, and ask that you show your support again for people with ME/CFS.

Dear Rep……

I’m emailing with an urgent request that you sign on to a letter to the Appropriations Committee sponsored by Rep. Zoe Lofgren and Rep. Anna Eshoo. Unfortunately, the deadline for signatures is imminent – March 14. The letter is about Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).

I am [the parent/sibling of] a patient with ME/CFS, a complex, debilitating, and chronic disease afflicting up to 2.5 million Americans of all ages. As noted in a 2015 report from the National Academy of Science’s Institute of Medicine (IOM), patients are left more functionally impaired – and with lower quality of life – than those with diseases like congestive heart failure, multiple sclerosis, and end-stage renal disease.

Twenty-five percent of patients are bedbound or housebound at sometime in their lives; many are unable to work; and recovery is rare. The disease costs individuals, the U.S. health care system, and our economy $17-$24 billion annually.

Yet, as the IOM noted, there has been “remarkably little research funding” to date. The cause is unknown, there are no diagnostic tests, and there is no FDA-approved treatment.

As a patient [adjust as needed] and part of #MEAction, I am requesting that you support the effort to have ME/CFS language included in the House Appropriations Committee report.

The proposed report language:

(1) supports continuation of the $5.4 million ME/CFS funding for the Centers for Disease Control’s (CDC),

(2) encourages CDC to resolve ME/CFS case definition issues and expand its efforts to educate health care providers,

(3) recommends that NIH create a strategic plan for ME/CFS research and increase the amount and types of funding,

(4) urges the Department of Health and Human Services to devise a multi-year strategic plan.

Please contact Angela Ebiner, Senior Legislative Assistant for Rep. Zoe Lofgren (CA-19), at Angela.Ebiner@mail.house.gov or (202) 225-3072 to coordinate your participation.

I look forward to your reply on this request; your support is so very important to me and [..].

Warmest Regards,

[Your Name] [Your Contact Info, Including address and +4 zip]

Remember: you should include your entire 9-digit zip code (it is a more precise zip code) – your zip code plus 4 – in all communications. If you don’t know it, go here.

~

CALL Instructions: 

If you reach someone:

My name is _________. I’m a constituent in (city and zip) and part of #MEAction. I am calling with an urgent request for Representative ______ to sign on to a letter to the Appropriations Committee sponsored by Representatives Zoe Lofgren and Anna Eshoo.

The letter supports the 1 to 2.5 million Americans like me [my sister/friend/etc] who are afflicted with the disabling and costly disease Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome or ME/CFS.

ME/CFS has no known cure or FDA-approved treatment, even though it can leave patients bedridden for decades. May I be connected to your health legislative assistant to discuss this?

You probably will not be connected to the assistant. If you are, repeat what you said above and go on to the next paragraphs. If you are not connected to the assistant, continue on with the same paragraphs below.

The deadline for signing the letter to the Appropriations Committee is March 14th. I will email (or fax) your office the letter with a note explaining why the letter is so critical.

You should contact Angela Ebiner, Senior Legislative Assistant for Congresswoman Lofgren, at 202 -225-3072 , to coordinate your participation.

It would mean the world to me, my family, and other ME/CFS patients in our district to have Representative ____’s support. May I call back tomorrow to find out if Representative ____ will sign this letter?

If you need to leave a voicemail:

My name is _____, and I am a constituent and part of #MEAction.  I live in city_____, zip____(I /my loved one suffer(s)) from the debilitating disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome or ME/CFS, which has no known treatment or cure.

I would like Representative _____ to sign on to a letter to the Appropriations Committee about ME/CFS sponsored by Representatives Lofgren and Eshoo.

The deadline for signing on to the letter is March 14th. You should contact Angela Ebiner, Senior Legislative Assistant for Congresswoman Lofgren, at 202 -225-3072 to coordinate your participation.

Please call me back at ___________. I will email your office a copy of the letter and will call back tomorrow to confirm that you received it. Thank you.

~

Let us know how it went!  If/when you hear back from your representative, please email us immediately congress@meaction.net to tell us what response, if any, you received so that we can tally our progress and inform Rep. Lofgren and Eshoo’s offices.


*Representatives who signed the 2017 Appropriations Letter

Zoe Lofgren
Anna G. Eshoo
Barbara Lee
Ted W. Lieu
Jackie Speier
Joyce Beatty
Eleanor Holmes Norton
Eric Swalwell
Michelle Lujan Grisham
John Lewis
Bonnie Watson Coleman
Danny K. Davis
Jim P. McGovern
Daniel W. Lipinski
Steve Cohen
Jamie Raskin
Matt Gaetz
Peter Welch
Ro Khanna
Alma Adams
Walter B. Jones
Elizabeth H. Esty
Pete A. DeFazio
 Brian Higgins
John J. Duncan Jr.
 Suzanne Bonamici
Michael Capuano
Ted Deutch
Louise Slaughter
Vern Buchanan
Austin Scott

 

Categories: Awareness, Past actions, Politics, United States

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12 comments on “Urgent Congressional Action! Ask your Rep. to Sign Letter for ME/CFS
  1. susanne hackstock-schollinz says:

    xxxx

  2. Laurie P says:

    SMCI also has a form if that’s easier for some people to use.

    https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00028&cid=

  3. marcie myers says:

    I’m very willing to be supportive but you’re making assumptions, I think, beyond the scope and capability of our local representatives. You’re asking them to sort out the conflicted definitions of CFS and ME when we can’t do so ourselves. You’re asking for the CDC to hurry up and educate current providers. That job was directly assigned to Dr. Elizabeth Unger several years ago at a CFSAC meeting by Dr. Friedan. Better to just check whether she’s doing her job. I’d asked this organization to support my development of a TV PSA encouraging current providers to become more knowledgeable but you declined my offer to do all of the work because you were too busy. Anybody want to explain how this makes any sense or do y’all want to micromanage? Email AND call our representative. In DC. Sigh. Marcie Myers

    1. bobbi ausubel says:

      Marcie, how can I get in touch with you about PSA for TV. I think thats very important. I would like to help make that happen. Bobbi Ausubel bobbi dot bobbiausubel1@gmail dot com that is a one 1 not an l after my name.

      Bobbi

  4. Megan kauth says:

    My friend is really sick.

    1. Kristi says:

      I’m sorry your friend is really sick, Megan. We are advocating for better health care for people like her. Thank you, for being a supportive friend.

  5. mark rotherham says:

    I have contacted Congressman Michael Gallagher, who is my rep here in Green Bay WI

    I contacted him by both phone and email. I will let you know if I hear back.

    I am in my 50s and have been suffering from ME/CFS for over 35 years.

    1. Kristi Traub says:

      Thank you for your contacting Congressman Michael Gallagher. Have you heard back from him? I am sorry to hear you have been suffering with ME/CFS for so long. We appreciate your effort in reaching out and speaking up.

  6. susan says:

    I contacted my Congresswoman Carol Shea-Porter both by phone and 2 emails even though I knew she’d be supportive. I think she didn’t have time to sign, do we know who signed?

    Dear Ms. L,

    Thank you for contacting me about chronic fatigue syndrome. I appreciate your thoughts and welcome the opportunity to respond.

    I share your support for enhanced funding to research this understudied condition, and I recognize that funding from the National Institute of Health (NIH) and other federal agencies provides the backbone for our nation’s scientific and medical research, which saves lives and improves public health.

    I was pleased by the recent announcement that the NIH will award four grants to establish a coordinated scientific research effort on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The total cost of the projects for fiscal year 2017 will be over $7 million, with support from multiple NIH Institutes and Centers that are part of the Trans-NIH ME/CFS Working Group. I will continue to support robust funding for the NIH and for these projects.

    For more information about current legislation, I invite you to visit http://www.congress.gov, where you can find the full text of a bill, a summary, cosponsors, and recent actions. I also invite you to visit my website, shea-porter.house.gov, to see my voting record and press releases or to sign up for my newsletter. Thank you again for contacting my office. It is a privilege to serve you in Washington.

    Respectfully,

    Carol Shea-Porter
    Member of Congress

    P.S. Please connect with me by visiting my official Facebook page, Twitter feed, and subscribing to my e-newsletter.

  7. susan says:

    Forgot to add date.
    The above email from Congresswoman Carol Shea-Porter was sent to me 3/15/2018.

    1. Thank you for contacting your congresswoman. Hopefully next year. Unfortunately she did not sign on this year.

      I called, emailed and had 4 friends email. Unfortunately, I think the only that really worked was my husband emailing one of the congressional aides that we spoke to when calling her office and saying that we were lifelong Democrats, have canvassed, contributed and this is the first time we have ever asked for something..

      This is the list of signers..

      Lofgren* CA
      Eshoo* CA
      Peter A. DeFazio * OR
      Barbara Lee*CA
      James P. McGovern* MA
      Danny K. Davis*IL
      Susan A. Davis CA
      Michael E. Capuano* MA
      Jamie Raskin* MD
      Steve Cohen* TN
      Eleanor Holmes Norton* DC
      Jackie Speier*CA
      Eric Swalwell*CA
      Daniel W. Lipinski*IL
      André Carson IN
      Bonnie Watson Coleman* NJ
      John Lewis* GA
      Suzanne Bonamici* OR
      Joyce Beatty*OH
      Dutch Ruppersberger MD
      Peter Welch VT
      Al Lawson FL
      Adriano Espaillat NY
      Seth Moulton MA
      Robert C. “Bobby” Scott VA
      Scott H. Peters CA
      Beto O’Rourke TX
      Nanette Barragán CA
      Lisa Blunt Rochester DE
      Judy Chu CA
      Stephen F. Lynch MA
      Ted Lieu* CA
      Adam Smith WA
      Jacky Rosen NV
      Ro Khanna* CA
      Donald Norcross NJ
      Louise kSlaughter (deceased)* NY
      Kyrsten Sinema AZ

    2. Kristi says:

      Thank you, Susan, for sharing Congresswoman Carol Shea-Porter’s response. We will record it in our database. It appears she did not sign the letter this time, but that doesn’t mean she won’t sign it next time. Every communication made with her helps to encourage support for ME/CFS. Thank you!

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