Yesterday, on September 16, 2026, #NotJustFatigue submitted formal comments to the National Institute of Allergy and Infectious Diseases (NIAID) regarding its proposed reorganization of the Division of Clinical Research. The reorganization comes as NIAID begins implementing its new 2026–2030 Strategic Plan, which explicitly recognizes ME/CFS as a chronic, multisystem disease and includes it within the Institute’s broader focus on long-term conditions following infection.

In our comments, #NotJustFatigue urged NIAID to ensure that this strategic recognition results in a stronger and more accountable clinical and translational research pathway for ME/CFS. Our recommendations include developing national research infrastructure capable of supporting a large ME/CFS cohort and coordinated biobank; improving the identification and validation of biomarkers and objective measures; building trial-ready patient populations that include people with severe, homebound and bedbound disease; expanding opportunities for drug repurposing and therapeutic development; strengthening clinical trial design and execution; and rebuilding the ME/CFS research workforce.

We also called on NIAID to make meaningful use of the growing federal infrastructure for post-infectious disease research, including RECOVER-TLC, while ensuring that ME/CFS is not treated simply as a subset of Long COVID and that people who developed ME/CFS before the COVID-19 pandemic remain represented in research. Finally, we urged NIAID to serve as a principal contributor to implementation of the broader Trans-NIH ME/CFS Research Roadmap and to establish clear senior-level responsibility, measurable objectives, investment tracking, and accountability for its ME/CFS research activities. The opportunity now is to move beyond recognition of ME/CFS and build the infrastructure necessary to translate scientific discoveries into biomarkers, diagnostics, clinical trials, and ultimately effective treatments.