On February 3rd, a major development for the ME/CFS community moved one step closer to becoming law: the Labor–HHS appropriations bill passed Congress and just needs the President’s signature. This legislation contains the strongest Congressional language supporting ME/CFS in recent memory, a milestone that reflects years of patient advocacy and sustained engagement with policymakers. For nearly two years, #NotJustFatigue has worked to help elevate the urgency of ME/CFS within federal research priorities, and this moment marks meaningful progress.

Critically, the bill directs the National Institutes of Health to return within 180 days with a detailed plan to implement the ME/CFS Research Roadmap. This requirement represents more than symbolic recognition; it asks NIH to clearly articulate how it will advance core scientific priorities, including biomarkers, diagnostic tools, and clinical trials. For people with ME/CFS who have endured decades of underinvestment and uncertainty, this language signals a shift toward accountability, transparency, and measurable forward movement.

The bill also emphasizes that Long COVID research initiatives at NIH and ARPA-H should better include people with ME/CFS, post-exertional malaise (PEM), and POTS. Ensuring that ME/CFS is meaningfully integrated into broader research efforts increases the likelihood that discoveries will translate into real-world diagnostics and treatments, outcomes the community has waited far too long to see.