The emergence of SARS-CoV-2, the virus responsible for COVID-19, swept across the globe with an unparalleled speed and severity. As a researcher dedicated to understanding how viral infections lead to chronic illness, I knew this pandemic would have far-reaching consequences. The history of post-viral illnesses strongly suggested that many survivors of COVID-19 would face prolonged and debilitating health challenges, with a substantial subset developing post-viral syndromes, including ME/CFS. This grim reality has become increasingly clear as the pandemic’s aftermath continues to unfold. 

At Bateman Horne Center (BHC), we anticipated that COVID-19, like other viral outbreaks, would leave a legacy of chronic illness in its wake. Historical research on post-viral syndromes suggested that at least 10% of COVID-19 survivors would struggle with lingering health effects, including fatigue, cognitive impairment, and other disabling symptoms characteristic of ME/CFS. Sadly, this prediction has proven to be accurate—and urgent action is needed. 

Through the National Institutes of Health’s RECOVER initiative, we had an unprecedented opportunity to study the long-term health impacts of COVID-19, including its role in triggering ME/CFS. As part of the RECOVER Mountain States PASC Consortium, a collaboration of researchers and healthcare systems across Utah, Colorado and New Mexico, BHC has contributed to groundbreaking research that sheds light on the intersection of COVID-19 and ME/CFS. 

The RECOVER study, which has collected data from more than 15,000 adult participants over the past four years, provided us with an unprecedented opportunity to determine whether ME/CFS occurred after being sick with COVID-19 and the overlap between ME/CFS and Long COVID. In a paper published today in the Journal of General Internal Medicine, we found that among participants infected with SARS-CoV-2, the incidence of ME/CFS—defined using the Institute of Medicine (IOM) diagnostic criteria—was 15 times higher than pre-pandemic rates. Of the 4,515 participants who enrolled within 30 days of contracting COVID-19, 73 developed ME/CFS at least six months post-infection. In total, 531 participants met ME/CFS criteria, translating to a prevalence of 4.5% among those infected—nearly eight times higher than uninfected participants. This prevalence is five times higher than pre-pandemic estimates and underscores the severe and lasting impact of COVID-19 on public health. 

There has been a lot of discussion about whether ME/CFS and Long COVID are the same. RECOVER has helped us understand that ME/CFS is a subset, likely a severe subset, of the much larger Long COVID group.

Strikingly, 90% of these post-COVID-19 ME/CFS cases clustered with the most symptomatic and severe cases of Long COVID, highlighting the overlap between these two conditions. This finding reinforces what we at BHC have long known: ME/CFS is not only a real and diagnosable condition, but it is also a disabling disease that demands attention, especially in the wake of a global pandemic. 

For healthcare providers, this research underscores an urgent call to action. The dramatic increase in ME/CFS cases post-COVID-19 means that providers will encounter this condition far more frequently. Early recognition and proper management of ME/CFS are not only possible but can be life-changing for patients. There are clinical diagnostic criteria recommended by the National Academy of Medicine that give providers the knowledge and tools they need to identify and manage, symptoms in both ME/CFS and Long COVID patients.

Bateman Horne Center is committed to changing this narrative. Through education, advocacy and collaboration, we aim to empower healthcare providers to recognize and address ME/CFS. Our mission is clear: to ensure that every patient facing this illness receives the care and support they deserve. 

The COVID-19 pandemic has been a stark reminder of the complex and lasting impact that viral infections can have on human health. The rise in ME/CFS cases is a wake-up call for the medical community.  

Now is the time to act, to educate, and to provide the compassionate care that can transform lives. Together, we can turn the tide for those living with ME/CFS and build a healthcare system that truly supports recovery. 

Read the publication here:

Journal of General Internal Medicine, “Incidence and Prevalence of Post‑COVID‑19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER‑Adult Study”.