Congress Tells NIH: Develop Plan to Implement ME/CFS Research Roadmap

Congress has instructed the NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days of signing the recent L-HHS bill. So in six months, we should have a plan to implement the NIH’s roadmap for biomarkers, treatments and clinical trials for ME/CFS.

#MEAction partnered with #NotJustFatigue to secure this support from Congress. #MEAction state chapter members and advocates attended meetings with congressional offices to explain the importance of ME/CFS research funding, helping to make this language in the L-HHS bill come to fruition. 

NEXT STEPS

This pressure from Congress is just one piece in the puzzle to getting the roadmap funded, however. We still need NIH to allocate actual funding to undertake the research. #MEAction is continuing to fight on this front. We sent a letter to the NIH Director calling on him to allocate $50 million of discretionary funding to the roadmap - funding from the Office of the Director - and he has agreed to meet with us to discuss the plan and funding. We are currently scheduling a meeting with him, and will keep you posted.  

It’s been a long road to make the ME/CFS Research Roadmap a reality. #MEAction was on the ME/CFS Roadmap Committee and witnessed many experts come together to create this most comprehensive, strategic plan for ME/CFS research to-date. 

We still have a lot to fight for in terms of getting the funding we deserve, but we are very committed to making that happen. We deserve treatments, clinical trials, and care. THANK YOU to everyone who has taken action with us to get us one step closer to getting the roadmap funded!

This is the biggest success towards substantial, disease-specific governmental funding and our campaign is leading the way. Can you chip in to fund our fight for the funding of the ME/CFS research roadmap? Every donation helps strengthen our work.

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