It has been reported (but without citation) that the US Congress has directed the ‘NIH to develop an implementation plan for the ME/CFS Research Roadmap within 180 days of signing the recent L-HHS bill.’
The Bill, passed by Congress, rejected Presidential amendments and was signed into law on 3rd February 2026 and covers many areas of appropriations.
However, the NIH has yet to allocate funding for the Roadmap and so the ambitious aims of the Roadmap may require to wait to come to fruition.
The underlying Report setting out the Roadmap identified 27 specific gaps in ME/CFS knowledge/research and followed these with strategies to defeat them. Each gap identified an important area but, in particular, the following are identified and mitigating strategies recommended –
- Improving understanding of onset, triggers, etiology, and pathogenesis
- Devising an overarching research strategy to address the complex nature of ME/CFS
- Promoting increased awareness in the medical and scientific community
- Reducing disease stigma by promoting the importance and value of research on ME/CFS
- Increasing the number of ME/CFS research grant applications submitted to NIH
- Promoting a more multidisciplinary and collaborative approach to the study of ME/CFS
- Expanding the number of new researchers and early career investigators entering the ME/CFS field
- Using case definitions that facilitate broader research utility and data sharing
- Building consensus on inclusion/exclusion criteria for control groups in ME/CFS research
- Increasing understanding of different stages of ME/CFS
- Addressing the heterogeneous and multifactorial nature of ME/CFS
- Addressing heterogeneity within individuals with ME/CFS
- Increasing knowledge about disease subtypes
- Addressing barriers to ME/CFS clinical trials
- Deciphering the underlying mechanisms specific to ME/CFS
- Developing ME/CFS biomarkers with diagnostic and prognostic utility
