Because of your persistence, advocacy, and shared determination, Congress is finally starting to listen.
This year’s Senate Appropriations bills include some of the strongest support for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) we’ve seen in over a decade — and it’s happening because of what you as the ME/CFS community have built together.
From organizing meetings with lawmakers to sending thousands of messages, patients, caregivers, and allies across the country made ME/CFS impossible to ignore — and now we’re seeing real results.
There’s one obstacle – these wins need to make it through the House appropriations process as well to take effect. You can help! Take action here:
REACH OUT TO YOUR HOUSE REPRESENTATIVES NOW
2025 Advocacy by the Numbers:
- 80 federal appropriations requests submitted
- 187 congressional meetings during Advocacy Week
- 226 advocates across 36 states and D.C.
- 3,500+ constituent messages sent to Congress
- Double the Senate support on our key Dear Colleague letters
This was made possible by your actions — and your belief that our government must do more for people with ME/CFS and related conditions.
Congressional Wins: What Your Advocacy Secured in the Senate
✅ $5.4M preserved for the CDC’s Chronic Fatigue Syndrome Program
This is huge — we expected the program could be eliminated based on early HHS restructuring plans. But the Senate held the line. The bill maintains full funding and encourages CDC to expand prevalence studies, update clinical guidance, and strengthen physician education — particularly in rural and underserved communities.
✅ ME/CFS remains eligible for $370M in Department of Defense research funding within the Congressionally Directed Medical Research Programs (CDMRP)
The Senate restored full funding to the Peer-Reviewed Medical Research Program (PRMRP) — and ME/CFS remains an eligible research area. Why this matters: This is the program that funded the $13M Bezisterim clinical trial investigating brain fog and fatigue. If this language makes it through the reconciliations process, ME/CFS researchers will be eligible to apply for up to $370 million in research funding.
✅ NIH directed to implement the ME/CFS Research Roadmap
Congress has officially told NIH to act. The Senate directs NIH to begin implementing the ME/CFS Research Roadmap — including studies on biomarkers, diagnostic tools, and treatments. They also require a detailed implementation plan within 180 days of enactment. This adds a layer of accountability we’ve long needed. Thank you to MEAction and #NotJustFatigue for spearheading this!
✅ ME/CFS is explicitly linked to Long COVID in federal research
Thanks to years of community advocacy around the IACCI framework (Infection-Associated Chronic Conditions and Illnesses), the Senate now urges NIH, ARPA-H, and CDC to address shared symptoms across ME/CFS, Long COVID, and other post-viral illnesses — including PEM, POTS, fatigue, brain fog, and more. This marks a significant shift toward broader, inclusive biomedical research and helps to begin breaking down the siloes that have long plagued our community.
🏛️ But We’re Not Done Yet: The House Still Needs to Act
These Senate victories won’t become law unless they’re included in the final federal budget — and the House has not yet scheduled any votes.
This is where you come in.
Tell your House Representative to match the Senate’s progress.
We’ve made it easy: Use our advocacy toolkit to email and call your Representative with just a few clicks.
From policy experts to patient advocates, none of this would be possible without your trust, investment, and voice.
But we’re only halfway there.
When the House returns they’ll be going through their own appropriations markup process. With the exception of the Peer-Reviewed Medical Research Program Funding which is traditionally only in the Senate appropriations package, we need this language and funding to also pass in the House in order to take effect.
Use our Toolkit here to reach out to them and let them know how meaningful it would be to our community to have them ensure that our Senate wins don’t get lost in the reconciliation process!
Your continued support will help us:
- Push these victories through the House
- Build bipartisan momentum ahead of final negotiations
Now is the time to double down.
With House votes pending, we’re sprinting into a critical phase—and every dollar makes an impact.
Make a gift to Solve today to fuel our next advocacy push.
Together, we’re turning advocacy into policy—and policy into progress.
