“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…”
Professor Ian Lipkin, Columbia University
STAT News
Summary
- The article discusses the call by Dr. W. Ian Lipkin, a leading epidemiologist, for the National Institutes of Health (NIH) to study Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) together in the RECOVER initiative.
- He argues that these conditions share biological mechanisms, such as neuroinflammation and mitochondrial dysfunction, and that integrating ME/CFS into the NIH’s RECOVER Initiative could accelerate research and treatment development.
- Despite congressional support for this approach, NIH has been reluctant, citing limited resources. The economic burden of these illnesses is significant, with ME/CFS alone costing up to $51 billion annually. Lipkin urges NIH to act on this opportunity to advance post-viral illness research.
Extracts
‘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 short-sighted 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…
‘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.'
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.