ME/CFS Advocates Make Urgent Push for More Funding

Cort

Founder of Health Rising and Phoenix Rising
Staff member
We are in a new era of ME/CFS advocacy and it's an exciting one. With The Solve ME/CFS Initiative (SMCI) and it's full-time ME/CFS advocate Emily Taylor working with ME Action our advocacy efforts are being taken to a new level. That means more of the men and women on Capitol Hill who control funding are getting engaged and supporting us in our fight to get the support this disease deserves.

The SMCI/ME Action collaboration resulted last month in over 30 meetings on Capitol Hill and laid the groundwork for several actions, including this one, an oh so timely letter to support ME/CFS research as the NIH fights to protect its funding. A similar letter last year signed by 55 legislators - the most ever in ME/CFS - helped get some Institutes to stop dragging their feet and get on board and fund the new research centers.

This letter - co-authored by ME/CFS champions Zoe Lofgren and Anna Eschoo - asks, among over things, that the NIH provide more funding and create a strategic plan to move ME/CFS research forward, and for the long-awaited CDC huge ME/CFS experts multisite trial to get a boost.
From ME Action
Your representative has until April 4 to sign the letter to request the language be added to the Appropriations report. We need your help to get the members who signed the NIH letter to sign again and, of course, to add new signers.

Last September, #MEAction’s congressional team worked tirelessly with Solve CFS Initiative (SMCI) and other advocates to secure a bipartisan letter, signed by 55 congressional representatives, that was sent to the NIH asking for an update on its research support for ME/CFS. Representatives Lofgren and Eshoo also sponsored that letter.

#MEAction has been working with Solve CFS Initiative (SMCI) since January on congressional advocacy, including getting this language added to the Appropriations report. SMCI recently held 30 congressional meetings in Washington, D.C. – supported by the #MEAction congressional team – to advocate for people with ME/CFS. This partnership will continue with a major congressional effort planned for May.

Instructions for contacting your House representative and making the “ask:”

  1. FIND YOUR HOUSE REPRESENTATIVE: http://www.house.gov/representatives/find/. You can send an email from the member’s website and find the phone number there. You should call the D.C. office, not the district office. (Please note that this action is ONLY for the House of Representatives, not the Senate. There may be a follow-up for Senators later, but that is on a different timetable.)
  1. CONTACT THE OFFICE: Please try both to email and call the office. Given the exceptional volume of calls going into offices right now, you may not be able to get through, so make sure you email the office if you don’t reach them on the phone immediately. Email instructions are #A and #B below; calling instructions are #C. We have two model emails – one for those who signed the NIH letter and one for those who did not. The signers are listed at the end below. Feel free to modify the letter to add personal information, but make sure to keep the description of “our ask.”
  2. PREPARE:
    Learn the Facts about ME/CFS: Familiarize yourself with the facts about ME/CFS using this One-Pager, 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.
EMAIL INSTRUCTIONS:

#A: IF YOUR REPRESENTATIVE SIGNED THE NIH LETTER, you should send the email below. NOTE: Some of the signers retired or did not win reelection, so confirm who your representative is if you’re not sure if your Rep is still in office. (See #1 above.)

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 about Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS). Unfortunately, the deadline for signatures is imminent – April 4.

I was so pleased and appreciative that you co-signed a September 2016 letter to the National Institutes of Health about ME/CFS that Representatives Lofgren and Eshoo sponsored. Representative Lofgren is now sponsoring a new letter for members to send to the Appropriations Committee regarding ME/CFS. That letter, which is attached, recommends that language be included in the Committee’s report to encourage HHS/NIH/CDC to accelerate and enhance its work in ME/CFS research and education, to complete a critical multi-year CDC study, to take steps to improve clinical care, and to pursue various targeted actions to more effectively address the needs of a vastly underserved population.

As a patient [as the caregiver/parent of a patient ] who has been ill with this disease for years and as a volunteer with #MEAction, I am requesting that you sign this letter to support the urgent need for progress in both research and clinical care.

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 [..].
With heartfelt thanks for your support,

[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.

#B: IF YOUR REPRESENTATIVE DID NOT SIGN THE NIH LETTER, follow this format:

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 – April 4th. 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 volunteer with #MEAction, I am requesting that you support the effort to have ME/CFS language included in the House Appropriations Committee report. The attached letter recommends the inclusion of report language encouraging HHS/NIH/CDC to accelerate and enhance their work in ME/CFS research and education, to complete a critical multi-year CDC study, to take steps to improve clinical care, and to pursue various targeted actions to more effectively address the needs of a vastly underserved population.

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.
~
#C: CALL INSTRUCTIONS

If you reach someone:

My name is _________. I’m a constituent in (city and zip) and a volunteer with 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 April 4th. I will email (or fax) your office the letter with a note [from #3 or #4 above] 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 a volunteer with 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 Tuesday, April 4th. 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.

Don’t forget to follow up with an email (See #A and #B above).
~
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.
~
NIH Letter Signers
Still in office:

Rep. Karen Bass (D, CA-37)
Rep. Joyce Beatty (D, OH-03)
Rep. Suzanne Bonamici (D, OR-01)
Rep. Robert A. Brady (D, PA-01)
Rep. Julia Brownley (D, CA-26)
Rep. Vern Buchanan (R, FL-16)
Rep. Katherine M. Clark (D, MA-05)
Rep. Steve Cohen (D, TN-09)
Rep. Elijah Cummings (D, MD-07)
Rep. Peter A. De Fazio (D, OR-04)
Rep. Suzan K. DelBene (D, WA-01)
Rep. Mark DeSaulnier (D, CA-11)
Rep. Elizabeth H. Esty (D, CT-05)
Rep. John Garamendi (D, CA-03)
Rep. Raúl M. Grijalva (D, AZ-03)
Rep. Luis V. Gutiérrez (D, IL-04)
Rep. Walter B. Jones (R, NC-03)
Rep. Derek Kilmer (D, WA-06)
Rep. Ron Kind (D, WI-03)
Rep. Peter T. King (R, NY-02)
Rep. Steve Knight (R, CA-25)
Rep. Barbara Lee (D, CA-13)
Rep. John Lewis (D, GA-05)
Rep. Ted Lieu (D, CA-33)
Rep. Daniel W. Lipinski (D, IL-03)
Rep. Doris Matsui (D, CA-06)
Rep. James P. McGovern (D-MA-02)
Rep. David B. McKinley (R, WV-01)
Rep. Martha McSally (R-AZ-03)
Rep. Patrick Meehan (R-PA-07)
Rep. Eleanor Holmes Norton (D, DC)
Rep. Chellie Pingree (D, ME-01)
Rep. Mark Pocan (D, WI-02)
Rep. Kathleen M. Rice (D, NY-04)
Rep. Adam B. Schiff (D, CA-28)
Rep. Austin Scott (R, GA-08)
Rep. F. James Sensenbrenner, Jr. (R, WI-05)
Rep. Louise McIntosh Slaughter (D, NY-25)
Rep. Adam Smith (D, WA-09)
Rep. Christopher H. Smith (R, NJ-04)
Rep. Jackie Speier (D, CA-14)
Rep. Eric Swalwell (D, CA-15)
Rep. Mike Thompson (D, CA-05)
Rep. Bonnie Watson Coleman (D, NJ-12)

No longer in office and succeeded by:

Rep. Robert J. Dold (R, IL-10), replaced by Bradley Schneider(D)
Rep. Sam Farr (D, CA-20), replaced by Jimmy Panetta (D)
Rep. Frank C. Guinta (R, NH-01), replaced by Carol Shea Porter (D)
Rep. Michael M. Honda (D, CA-17), replaced by Ro Khanna (D)
Rep. Steve Israel (D, NY-03), replaced by Thomas Suozzi (D)
Rep. James McDermott (D, WA-07), replaced by Pramila Jayapal (D)
 

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