The National Institutes of Health is at a crossroads with the RECOVER Initiative, its flagship program to address long Covid. Designed to provide answers and treatments for the millions suffering from long-term effects of SARS-CoV-2 infection, the initiative has already received significant criticism for failing to prioritize the needs of patients and advance meaningful clinical trials. Now, as Congress, the scientific community, and advocates call for the inclusion of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) within the RECOVER framework, NIH has an historic opportunity to transform post-viral illness research.
For one of us, Elizabeth, this debate isn’t abstract. After graduating from a top university and starting a successful career in TV production, she developed severe ME/CFS that ultimately left her unable to speak or move for years. Her experiences — from questioning whether she’d be able to speak again, to being diminished by doctors who were unable to properly diagnose her — are unfortunately common for people with ME/CFS. For others, ME/CFS may mean losing the ability to work, raise their children, or live independently. They are often left isolated and dismissed by a health care system unprepared to treat or even recognize their condition. Many are too disabled to advocate on their own behalf.
While the emergence of Covid-19 has fostered a massive opportunity to advance our understanding of post-viral illnesses like ME/CFS and long Covid, the RECOVER Initiative has been plagued by missteps. An August 2023 investigation by STAT exposed widespread frustration among experts over its failure to prioritize meaningful clinical trials for long Covid.
Echoing these concerns, Congress recently urged NIH to expand RECOVER’s scope to address the full spectrum of long Covid symptoms and evaluate therapies for overlapping conditions such as ME/CFS. Despite these clear directives, NIH leadership has sent mixed messages. While some officials have acknowledged the shared biological mechanisms between long Covid and ME/CFS, others cite limited resources and narrow mandates to justify excluding ME/CFS from RECOVER studies.
This hesitation is both scientifically shortsighted and economically imprudent. ME/CFS and long Covid share profound similarities, including post-exertional malaise, cognitive dysfunction, sleep abnormalities, and immune dysregulation. These two disorders overlap in biological mechanisms, including neuroinflammation, mitochondrial dysfunction, and impaired autonomic regulation. Integrating ME/CFS into RECOVER would allow researchers to study these shared pathways, accelerate the identification of biomarkers, and develop therapies that benefit millions of Americans living with these devastating conditions.
Beyond the immense toll on impacted people, the economic consequences of ME/CFS and long Covid are equally staggering. A 2021 study estimated that ME/CFS alone costs the U.S. economy $36 billion to $51 billion annually in lost productivity and health care expenses. Moreover, the emergence of long Covid has increased this financial burden considerably, as millions of additional Americans — an estimated 6.4% of adults — have been afflicted in the wake of Covid-19.
Congress has already provided a road map for action. In 2024, the Senate Appropriations Committee advanced a report directing NIH to rebalance its RECOVER program to prioritize clinical trials for symptoms that define both long Covid and ME/CFS, such as post-exertional malaise, brain fog, and fatigue. It also encourages NIH to draw on therapies already used for ME/CFS and related conditions. These recommendations align with the proposals detailed in a recent letter to NIH from a distinguished group of ME/CFS experts that call for NIH to include individuals with ME/CFS onset prior to 2020 as a comparison group in RECOVER trials, expand the use of validated diagnostic tests specific to ME/CFS and long Covid, leverage existing ME/CFS research networks to avoid duplicative efforts, and establish an advisory panel comprising patients, caregivers, and scientific experts to guide research priorities.
A recent “After Action Review” report from Congress’ Select Subcommittee on the Coronavirus Pandemic further underscores how critical it is to invest in preparedness and post-viral illness research. The report warns of the broader implications for workforce productivity, emphasizing that chronic conditions like long Covid and ME/CFS have the potential to erode the nation’s ability to respond to future public health crises. Failing to address this connection now will only leave the country less prepared for future pandemics and their long-tail consequences.
RECOVER has the potential to be a model for innovative, patient-centered research. But for that to happen, NIH must listen to Congress, the scientific community, and the millions of individuals waiting for hope. Including ME/CFS within RECOVER’s scope is not just an opportunity — it’s an imperative. With hundreds of millions in funding and the largest-ever cohort of people with post-viral illnesses, RECOVER could provide the answers that ME/CFS researchers have sought for decades. NIH must seize this moment to lead.
W. Ian Lipkin, M.D., is the John Snow professor of epidemiology at Columbia University and the director of the Center for Infection and Immunity, where he has pioneered research on infectious diseases and their long-term impacts. He is also the director of the NIH Center for Solutions for ME/CFS at Columbia University. Elizabeth Ansell is the founder and executive director of #NotJustFatigue, and an advocate for ME/CFS.