People who have had COVID may be almost 8 times more likely to develop ME/CFS

COVID-19 appears to be associated with a substantial increase in ME/CFS cases, according to a new study. Using data from a long-running COVID research initiative led by the US National Institutes of Health (NIH), scientists calculated that the incidence of ME/CFS is now 15 times higher than previous levels. from before the pandemic, and found that people with a history of COVID are almost eight times more likely to develop a chronic illness.

“This research highlights the urgency for health care providers to recognize post-COVID-19 ME/CFS,” said first author Dr. Suzanne D. Vernon, director of research at the Bateman Horne Center, in a statement sent to IFLScience.

ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) is a complex chronic illness that can sometimes be attributed to a previous infection. Even if the initial infection was mild and the person has fully recovered, a set of debilitating symptoms may begin to appear afterward.

If this sounds familiar in the context of COVID-19, it’s because there are many parallels between ME/CFS and long COVID. While some long-COVID patients may have organ damage from the virus itself or face long-term effects from hospitalization, there are still others who have recovered from a mild bout of COVID to develop symptoms such as brain fog, fatigue, and dizziness.

But while long COVID is a relatively new problem, ME/CFS and the concept of post-viral illnesses have been known for some time. Nonetheless, many patients report difficulty accessing diagnosis and care, and face stigma, misunderstanding and conflicting advice, as evidenced by stories such as this patient story published in the journal Work.

It is now recognized beyond doubt that ME/CFS is a biological disease that affects multiple body systems. There are varying degrees of severity and the disease can have a significant impact on daily activities. A key element for many patients is post-exercise malaise, where symptoms such as fatigue worsen after physical activity. The Centers for Disease Control and Prevention says that about a quarter of people with this condition are bedridden at some point during their illness.

Given everything we’ve learned about long COVID since the pandemic was declared nearly five years ago, the researchers behind the new study wanted to examine the potential relationship between COVID and the ME/CFS.

They turned to data from the RECOVER initiative, an NIH-funded project that was set up to be “the world’s most comprehensive and diverse study” of long COVID. This analysis included 11,785 participants with a history of SARS-CoV-2 infection and 1,439 who had not been infected.

The team assessed how many participants met diagnostic criteria for ME/CFS at least 6 months after contracting COVID-19. It should be noted that these criteria rely on self-report of symptoms, which was highlighted as a limitation of the study.

ME/CFS occurred in 4.5 percent of infected participants, compared to just 0.6 percent of uninfected participants. Nearly 90 percent of those who met the criteria for ME/CFS had also been identified as among the most symptomatic long COVID patients, highlighting the crossover between the two conditions.

“These findings provide additional evidence that infections, including those caused by SARS-CoV-2, can lead to ME/CFS,” writes the National Institute of Neurological Disorders and Stroke in a statement on the study.

The most common symptoms reported by the cohort were post-exercise malaise, orthostatic intolerance (dizziness when standing) and cognitive impairment. These are also symptoms reported by many long-COVID patients, and the authors say more research is urgently needed to understand why COVID can lead to chronic illness in some and who may be predisposed to it.

“This research highlights the urgency for healthcare providers to recognize post-COVID-19 ME/CFS. Early diagnosis and appropriate management can transform lives,” Vernon said.

The study is published in the Journal of General Internal Medicine.