Solve CEO Emily Taylor and co-authors from esteemed organizations including the Bateman Horne Center; New York University; the Patient Led Research Collaboration on COVID-19; the University of California, San Francisco; and the University of Utah recently published a research paper in the Journal of General Internal Medicine about how often adults infected with SARS-CoV-2 go on to develop ME/CFS and how ME/CFS relates to Long Covid. This work was part of the NIH’s Researching COVID to Enhance Recovery (RECOVER) Study—specifically a part of the study focusing on long-term problems for adults with COVID-19.
Because infections (either viral or bacterial) can bring about ME/CFS, the team predicted that the risk of developing ME/CFS for adults infected with SARS-CoV-2 would be greater than that for uninfected adults. To test this prediction and to learn how the SARS-CoV-2 pandemic and Long Covid relate to ME/CFS, the team studied almost 12,000 patients in the RECOVER-Adult cohort. These patients came from diverse communities in 33 states, Washington DC, and Puerto Rico.
The team found that 4 in 10 adults infected with SARS-CoV-2 would have at least one of the chief symptoms of ME/CFS and that 1 in 22 would meet all diagnostic criteria for ME/CFS. Adults infected with SARS-CoV-2 developed ME/CFS five times as often as did uninfected adults, showing that ME/CFS is truly one of the long-term possible consequences of SARS-CoV-2 infection. Adults who developed ME/CFS were more likely to be middle-aged, White, women, and from rural areas than were adults who did not develop ME/CFS. They were also less likely to have been vaccinated.
The team found that the adults who developed ME/CFS included many patients who had been gravely sick with Long Covid. Almost 9 in 10 adults who developed ME/CFS had also met the diagnostic criteria for Long Covid. And of the adults who had both Long Covid and ME/CFS, about half had prominent levels of all Long Covid symptoms and the worst qualities of life. Overall, the most common symptoms among infected adults were post-exertional malaise, orthostatic imbalance, unrefreshing sleep, cognitive impairment, and fatigue.
This study is important because it shows how the pandemic substantially increased the risk for adults developing ME/CFS. These results are further proof that (viral or bacterial) infections can lead to ME/CFS and that ME/CFS is a bona fide long-term condition that may happen after SARS-CoV-2 infection. Also, the study showed that the risk of developing ME/CFS is greater than we realized for the general adult population that was never infected with SARS-CoV-2. Earlier studies may have underestimated this risk because they considered only the symptom of fatigue to tell which patients had ME/CFS (instead of also considering other cardinal symptoms) or they relied on electronic health records (even though early records usually did not properly document ME/CFS).
The research team noted several ways they could improve their analyses in future work. For example, to decide which patients developed ME/CFS, the team relied on patients’ self-reported symptoms. But symptoms of ME/CFS often change over time, and patients may not remember or understand their own symptoms. (For example, some participants may have been unfamiliar with the main symptom of post-exertional malaise). Furthermore, the team did not consider hospitalized patients, even though a subset of these patients probably had ME/CFS. And adults with especially severe symptoms may not have participated in or completed the study because of their illness. Future studies may more accurately measure the risk of developing ME/CFS by using more objective diagnostic criteria and by more fully including patients with the most severe ME/CFS symptoms.
Emily noted, “I was honored to be included as a co-author of this important publication alongside some of the most gifted experts in the field. Providing evidence to support the increased prevalence of ME/CFS following Covid-19 infection is an important step in furthering our understanding of ME/CFS, Long Covid, and other infection-associated chronic conditions and will bring us closer to finding effective treatments and cures. The number of people suffering from ME/CFS will continue to increase as a result of COVID-19, and these findings reinforce Solve’s dedication to finding solutions for our growing community.”
Read the article in its entirety here:
Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study | Journal of General Internal Medicine