Hi all,
I wanted to circle back with a quick update: the federal funding bills covering Labor, Health and Human Services and the Department of Defense are now final. This means the negotiations are complete, and the language and funding levels are locked in!
Over the past year, I’ve shared a few “interim” wins as we saw parts of our Advocacy Week asks show up in drafts and committee materials. Those were encouraging milestones. But, as you know, nothing is real until it makes it into the final negotiated version of the bill.
I’m really happy to confirm that three of our core asks from Advocacy Week last year made it into the final version:
1) Centers for Disease Control and Prevention (CDC) ME/CFS program funding is protected
The CDC Chronic Fatigue Syndrome program is funded at $5.4 million. This is one of the only dedicated federal public health footholds for ME/CFS. Keeping it in place was not easy this year with so many programs facing cuts, so this is a meaningful “we held the line” moment for our community.
2) ME/CFS remains eligible for a key Department of Defense Medical Research program
ME/CFS will remain an eligible topic area under the Department of Defense Peer-Reviewed Medical Research Program (PRMRP) at the Congressionally Directed Medical Research Program (CDMRP). The PRMRP program itself will receive $370 million this year. That eligibility matters because it keeps an important research funding pathway open to our scientists.
3) National Institutes of Health (NIH) now has a real deadline to act on the ME/CFS Research Roadmap
Congress directed NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days of the bill being signed. This doesn’t automatically guarantee funding but it does create a clear moment of accountability and ensure ME/CFS is a priority at NIH. NIH now has to put in writing how it plans to move forward on the roadmap’s priorities like biomarkers, treatments, and clinical trials.
A huge thank you to #NotJustFatigue and #MEAction, who have been spearheading the Roadmap push. This is a major step in the right direction. The focus now shifts to making sure NIH receives the resources to actually implement the plan.
In simple terms, this means the government has committed to keeping key ME/CFS research and public health programs alive, protecting pathways for new research funding, and directing the NIH to spell out how it will move toward real tests and treatments. We are still far below the funding level our community needs and deserves, but these wins keep the structures in place that we will need moving forward, bringing us closer to real answers, treatments, and recognition.
Most of all: thank you. For showing up, for sharing your stories, and for making sure this community is seen and acknowledged in Capitol Hill negotiations. Your advocacy made these outcomes possible.
Warmly,
Monique Wike
Advocacy Director, Solve M.E.