From June 23–27, over 200 fierce, compassionate advocates came together from all across the country to make sure one thing was clear: ME/CFS, Long Covid, and related conditions will not be ignored.
In a single week, the Solve M.E. community took part in 187 congressional meetings—sharing powerful personal stories, urgent data, and clear policy goals with Senate and House offices. This coordinated, cross-country effort was a bold reminder to our elected leaders in the lead up to the budget votes that we’re here, we’re organized, and we demand action.
What We Did Together:
- 187 total meetings with congressional offices
- 226 attendees from across 36 states and D.C.
- Met with 67 Senate and 120 House offices (116 Democratic, 69 Republican, 2 Independent)
This Is Strategy, Not Just Stamina
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.
Our Core Policy Asks This Year:
- Fully restore funding for the Congressionally Directed Medical Research Program (CDMRP) and protect ME/CFS as a topic area within the Peer Reviewed Medical Research Program (PRMRP)
- Protect and restore the CDC’s Chronic Fatigue Syndrome Program – maintaining the line item in the budget appropriations process
- Fund the NIH’s ME/CFS Research Roadmap (in collaboration with MEAction and #NotJustFatigue)
- Support a 10-year follow-up to the 2015 IOM/NASEM report
- Ensure ME/CFS is included in NIH restructuring discussions
See our congressional briefing one-pager here for more details.
Beyond the Hill: Building Community and Power
We know advocacy is more than just a meeting—it’s about building momentum. That’s why this year we also focused on strengthening state-based teams. It’s been wonderful seeing our state teams start to connect and get to know each other as they advocate together over multiple years. Our state teams are coalescing and becoming a powerful force for good!
Patient Power on Full Display: EmPOWER M.E.
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 — and featured insights from Dr. Todd Davenport, Dr. Lisa Hamilton, and Dr. Clayton Powers. We also held community forums exploring disability rights under the ADA for those navigating post-exertional crashes in public spaces, along with discussions on the art of asking for support in your private life.
Watch the main session recording: “Pacing: Power in Slowing Down” here.
Helpful Links + Resources:
- Congressional Briefing Document (PDF): Our one-pager on this year’s policy asks
- Social Media Toolkit: This year, we focused on the efforts to get a cosponsor for H.R. 3906, which would restore funding to the CDMRP through legislative channels. This effort is ongoing – please feel free to amplify.
To every person who joined, shared, or supported this work—thank you.Whether you logged in from bed, braved brain fog, or lifted others up—you brought visibility, compassion, and strategy to the halls of power.
We see you. We’re with you. And we’re just getting started.
— The Solve M.E. Team