Hi friends,
It’s Monique here, Advocacy Director at Solve M.E., with a progress update on the budget process.
We’re right in the thick of appropriations season — when Congress decides how federal dollars will be spent next year. This is always an important moment for our community, but this year it’s especially complex.
Here’s where things stand:
The House version of the Labor, Health, and Human Services appropriations bill is deeply disappointing – and almost unrecognizably different from the Senate version.
- Funding in the House version is reallocated so differently from the Senate version that there is almost no way to compare them. It also focuses only on the POTS and Dysautonomia symptoms of ME/CFS, with no mention of post-exertional malaise or any of the broader systemic issues facing our community.
- (Note: We believe this may be due to a clerical error, as some of the language appears to be copy-pasted from another identical section – we are following up with subcommittee staff on this).
The Senate version is better. Their language:
- Calls on CDC to launch a national epidemiological study of post-infectious syndromes, including ME/CFS, and to investigate causes, diagnosis, and risk factors.
- Urges CDC to engage with patients and physicians, update clinical guidance, and expand its Project ECHO provider education program into more states, with a focus on rural and underserved areas.
- Directs NIH to implement the new ME/CFS Research Roadmap — including biomarkers, diagnostic tools, and clinical trials — and requires a progress plan back to Congress within 180 days.
- Pushes NIH and ARPA–H to integrate ME/CFS into Long COVID treatment and research trials, especially around symptoms like fatigue, brain fog, post-exertional malaise (PEM), and POTS.
- Bonus in the Department of Defense bill – it keeps ME/CFS eligible for research under the Defense Department’s Peer-Reviewed Medical Research Program (PRMRP) at the Congressionally Directed Medical Research Program (CDMRP).
What comes next: Reconciliation
The House and Senate will have to reconcile their very different bills — deciding which pieces of each bill make it into the final version of the budget. Given the vast disparities between the two, this process is likely to take time. The current deadline is September 30th, but the White House Administration has already requested an extension (continuing resolution) through January 2026 to avoid a shutdown.
In other words, this process is far from over, and your voice matters right now.
We need to fight for the Senate version of the ME/CFS language to be what ends up in the final reconciled bill.
💡 Here are two ways you can help today:
- Stand with the Senate: We’ll be sending thank-you letters urging them to hold strong and keep ME/CFS language in the final bill. Send emails to your Senators here.
- Push the House to do better: For our House Representatives, we will be sending them emails asking them to become an ME/CFS champion by supporting the inclusion of the Senate ME/CFS language in the final reconciliation bill. Reach out to your House reps here.
I know these updates can feel technical and focused on tiny details. But underneath all the acronyms and bureaucratic processes is something very real: our collective effort to make sure people with ME/CFS, Long COVID, and related conditions are no longer invisible in federal policy.
It may not be easy, and it may not be fast, but step by step, we are moving the needle. And we’re doing it together.
With gratitude and determination,
Monique Wike
Advocacy Director, Solve M.E.