Another quote:
"This year’s Advocacy Week was intentionally focused. We prioritized key bipartisan members of Congress involved in the federal budget process—at a time when essential ME/CFS and Long COVID programs and funding are on the chopping block. We trained new advocates, empowered seasoned leaders, and adjusted in real-time to fast-moving developments in D.C."
2/n
Policy asks:
- Restore funding for Congressionally Directed Medical Research Program (CDMRP) & protect ME/CFS as a topic area
- Protect & restore the CDC’s Chronic Fatigue Syndrome Program
- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with #MEAction and #NotJustFatigue)
- Support 10-year follow-up to the 2015 IOM/NASEM report
- Ensure ME/CFS is included in NIH restructuring discussions
Details:
https://solvecfs.org/wp-content/uploads/2025/07/Congressional_Briefing_061625Final.pdf
3/n
More quotes:
"We also hosted our annual EmPOWER M.E. virtual forum, designed to give patients practical tools and legal knowledge to navigate life with complex chronic illness.
This year’s main session focused on the life-saving practice of pacing — including physical, emotional, cognitive, practical, and sensory strategies …"
Recording of the June 27 EmPOWER M.E. forum:
https://www.youtube.com/watch?v=to9xPPuRM1o
4/n
I'll end by saying I did advocacy week for the first time this year. I learned so much & enjoyed meeting (via Zoom) other volunteers who attended Senate & House staff meetings.
The training sessions were helpful and were recorded in case you could not watch in real time.
My team leader was so well informed. It helps to have healthy volunteers (no brain fog) in addition to patient volunteers!
Kudos to Solve ME!
https://solvecfs.org/advocacy-week-2025-power-progress-and-patient-led-change/
5/5
