The National Institutes of Health (NIH) is at a crossroads with its flagship program, RECOVER, which aims to address long Covid. However, critics argue that the initiative has failed to prioritize the needs of patients and advance meaningful clinical trials. Now, as Congress, scientists, and advocates push for inclusion of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) within RECOVER, NIH has a historic opportunity to transform post-viral illness research.
ME/CFS is a devastating condition that leaves individuals unable to work or live independently. Many are isolated and dismissed by healthcare systems unprepared to treat or recognize their condition. Research on ME/CFS has been hindered by missteps in the RECOVER Initiative, which has failed to prioritize meaningful clinical trials for long Covid symptoms.
However, integrating ME/CFS into RECOVER could accelerate research on shared pathways, identify biomarkers, and develop therapies that benefit millions of Americans living with these conditions. The economic consequences of ME/CFS and long Covid are staggering, with estimated costs ranging from $36 billion to $51 billion annually in the US economy.
Congress has provided a roadmap for action. The Senate Appropriations Committee advanced a report directing NIH to prioritize clinical trials for symptoms that define both long Covid and ME/CFS. Experts recommend rebalancing the RECOVER program, leveraging existing research networks, and establishing an advisory panel comprising patients, caregivers, and scientific experts.
NIH has the potential to be a model for innovative, patient-centered research. However, it must listen to Congress, scientists, and individuals waiting for hope. Including ME/CFS within RECOVER’s scope is not just an opportunity but an imperative. With hundreds of millions in funding, RECOVER could provide breakthroughs that have eluded researchers for decades.
Source: https://www.statnews.com/2025/02/04/recover-initiative-nih-long-covid-me-cfs-post-viral-illness