***UPDATE: THIS ACTION IS NOW OVER***
Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their fellow House Members for TWO requests that can increase funding for ME!
These requests would include:
1) Request $9.9 million for ME programs at the CDC (Labor-HHS committee)
2) Add ME to the Peer-Reviewed Medical Research Program (Defense committee)
What our Hill champions are fighting for will take efforts for ME to the next level and in a direction that can be built and expanded upon – something we desperately need. The potential of increasing funding for ME programs by millions of dollars is a huge step. We ask you to urge your elected officials to sign on to the letters by 3/27 that our champions are fighting for!
We have fought for more funding and more attention to ME for years. Since the beginning of #MillionsMissing we have highlighted the inequities of funding allocation and the government’s failure to make ME a priority. Among other things, we have fought for increased research dollars, more informed clinicians, and patient inclusion in federal agency programs. We continue to fight for ME equity and equality, but we know that nothing on the road to this has been or will be perfect. We are simultaneously advocating for more funding for federal agencies to address our priorities and working to hold those agencies accountable to the community and maintain pressure on them to do better.
The Labor-HHS committee appropriations include existing CDC programs such as the Behavioral Risk Factor Surveillance System state tracking, Common Data Elements project, medical education efforts, and multi-site clinical assessment of ME/CFS, and an additional $4.5 million for three new programs; a nationwide epidemiological study, medical education programs, and Project ECHO, as well as $450,000 in additional funds to accelerate the publication of results from the ongoing multi-site clinical assessment of ME/CFS. Better epidemiological data would substantially enhance our ability to establish priorities for further research and addressing the clinical care crisis.
The Defense Appropriations letter requests the inclusion of language in the Defense Appropriations bill for the FY20 budget that would add Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) to the list of Congressionally Directed Topic Areas in the Peer Reviewed Medical Research Program (PRMRP). Researchers may apply for funding in the 48 topic areas selected by Congress. ME/CFS was included in FY 2011 and we believe it is appropriate to have it included again. Given the link between ME and Gulf War Illness and the number military service members and veterans with ME, the prospect of gaining DOD funding is a great opportunity for more research to be carried out.
ME has been diagnosed among service men and women and has clinical presentations similar to those of Gulf War Illness (GWI).
We want to reiterate that these initiatives are an enormous sign of support from our champions on the hill. Going into Advocacy week at the beginning of April, this is a wonderful way to build allies for ME. This is such an important opportunity. Please take action today!
After you have sent your emails, please follow-up with a call to your member’s office. Go here to find your REPRESENTATIVE: https://www.house.gov/representatives/find-your-representative
Once you have identify the phone number for the Washington DC office, you can use the script below to make your call.
Hello, my name is _______ (your name) and I am calling from _______ (city), ______ (state) in zip code ______ (your zip code). I am calling to ask Representative _________ to please co-sign two appropriations request letters concerning Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Unfortunately, I need to request a rapid response; the deadline for signatures is Wednesday, March 27, COB. I emailed this request and the letters to your offices today.
The first letter is to Labor HHS Appropriations in support of $9.9 million for existing and new ME/CFS programs at the CDC to meet the urgent needs of ME/CFS patients.. The second is to the Defense Appropriations Subcommittee requesting the inclusion of report language adding ME/CFS to the list of Congressionally Directed Topic Areas in the Department of Defense’s Peer Reviewed Medical Research Program (PRMRP).
The CDC has called this disease “America’s Hidden Health Crisis.” I ask you to help us solve this crisis. Please contact Ms. Priscilla Kim (Priscilla.Kim@mail.house.gov) or x53072 in the Office of Congresswoman Lofgren. Again the deadline is COB, March 27. Thank you!