#MEAction to Meet with NIH Director during #MillionsMissing Week
- #MEAction
- Apr 14
- 2 min read
We are excited to announce that #MEAction has secured a meeting with the NIH Director, Dr. Bhattacharya, on May 13th to discuss the implementation plan and funding for the NIH ME/CFS Research Roadmap.
For the past two years, #MEAction has been working behind-the-scenes on multiple fronts to ensure the NIH ME/CFS Research Roadmap is fully implemented and funded. The roadmap is the most comprehensive, strategic plan for ME/CFS research to-date – with a focus on delivering clinical trials.
We’re pursuing every path to get this done. We advocated before Congress, which resulted in the Senate Appropriations Committee directing the NIH to provide the Committee with a detailed implementation plan for the ME/CFS Research Roadmap within 180 days. We sent a joint letter to the Senate asking them to dedicate funding for the roadmap in the FY27 appropriations bill. Now we are meeting with the NIH Director to discuss funding the roadmap directly - a strategy that has been successful in the past for securing ME/CFS funding.
But funding alone isn’t enough. The roadmap must be implemented with the right experts – scientists who understand ME/CFS and its severity and complexity.
Our Scientific Director, Jaime Seltzer, represented #MEAction at the Investigator’s Meeting for the Collaborative Centers and Data Management Center at the NIH, ensuring the voices and expertise of our community are part of every conversation. Thoughtful experts have been working on the implantation plan draft and these conversations will also shape our meeting with Dr. Bhattacharya.
This meeting didn’t happen by chance. It happened because 7,000 of you signed our letter demanding accountability and action. Together, we made the NIH listen.
But the truth is: we shouldn’t have to fight this hard for the research we need to survive. ME has been dismissed and ignored for far too long — and that is our drive behind #MillionsMissing this year - to get recognition as a serious, complex disease that deserves support and research. We’re calling on our community to tell that story this #MillionsMissing - join us here!
We’re closer than ever — and we need your continued strength and support to push this over the finish line. Can you chip in $25 or $250 today to fuel our advocacy fight?
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