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:
- 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.)
– 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.
- 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.”
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.
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.
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 firstname.lastname@example.org 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
|Anna G. Eshoo|
|Ted W. Lieu|
|Eleanor Holmes Norton|
|Michelle Lujan Grisham|
|Bonnie Watson Coleman|
|Danny K. Davis|
|Jim P. McGovern|
|Daniel W. Lipinski|
|Walter B. Jones|
|Elizabeth H. Esty|
|Pete A. DeFazio|
|John J. Duncan Jr.|