Emily Taylor
Senior Member (Voting Rights)
Throughout 2019, I reported on our advocacy gains for ME/CFS. Thank you for standing with me and our advocacy partners during a particularly turbulent year while we fought for ME/CFS in Washington D.C.
Today, with this final FY20 budget update, I’m so happy to report that our tenacity paid off! We achieved unprecedented, bipartisan victories for ME/CFS research!
These six federal victories (outlined below) represent a true shift in Congress. As you know, Congress has the power to control spending and create policy. Thanks to our collective ME/CFS advocacy efforts, 11% of Congress is an ally and will help us create real outcomes at federal agencies (e.g. Centers for Disease Control, National Institutes of Health). These agencies are charged with implementing the policy and funding that our friends in Congress dictated this year. These victories can and will change lives.
When I started ME/CFS advocacy work in 2016, we were fighting an uphill battle against misinformation and many leaders didn’t think this disease was real. But now, every member of congress we’ve contacted and their staff acknowledge the reality of “America’s hidden health crisis.” Solve M.E. Advocacy Day participants, board members, and I have attended more than 500 face-to-face Congressional meetings in three years, and these meetings have made an impact.
I am honored to have led us to this place as part of Solve M.E. and together we should take a moment to celebrate this collective victory. I’m filled with hope and eager to continue our work in Washington, DC. Let’s kick off 2020 with great momentum. Together, we are unstoppable.
See you in D.C.,
Emily Taylor
Director of Advocacy and Community Relations
Solve M.E.
6 ME/CFS Congressional Victories from 2019
New Budget, New Funding, and New Deadlines
With the President’s signature on H.R. 1865 and H.R. 1158, the 2020 federal budget is now finalized – totaling a record-breaking $2.75 trillion.
Here’s what the 2020 budget means for ME/CFS:
After two years of hard work, Solve M.E. has successfully added ME/CFS as an eligible topic area for the Peer Reviewed Medical Research Program (PRMRP). This program will receive $350 million of funding in 2020 which ME/CFS researchers can now apply to receive!
In one of its most aggressive actions on behalf of ME/CFS, Congress instructed the Department of HHS to submit a plan within 90 DAYS that addresses 1) the crisis in ME/CFS clinical care, 2) accelerating drug development, and 3) facilitating improved interagency collaboration.
Despite administration recommendations to eliminate the CDC’s work on ME/CFS, our advocacy efforts preserved
$5.4 million for 2020 to fund the Multisite Clinical Assessment of ME/CFS (which recently expanded into pediatric study) and continued online medical education efforts for medical professionals.
In the 2020 federal budget, Congress directly issued guidance to the office of the NIH Director to expand ME/CFS efforts including 1) new disease specific funding announcements, 2) an initiative to reach consensus on the ME/CFS case definition, and 3) mechanisms to incentivize researchers to enter the field.
On May 23, 2019, the U.S. unanimously adopted S. Res 225 supporting the goals of International ME/CFS Awareness Day. This legislation is the first action exclusively about ME/CFS adopted by Congress since 1989.
Patient-Centered Outcomes Research Institute (PCORI) is a biomedical research powerhouse, dedicated to putting patient needs at the center of science. Solve M.E. is proud to be part of the “Friends of PCORI” coalition, and expects ME/CFS research to thrive in this new chapter of PCORI.
Keep Congress Fighting for ME/CFS!
The record breaking 2020 Federal budget included more action for ME/CFS than ever before. 64 members of Congress answered our call to action. Let’s make sure to thank them for their support.
