Kaiser Permanente study finds 14% of people living with chronic fatigue-like syndrome developed it after an episode of COVID
A study following Kaiser Permanente Northern California (KPNC) patients with symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in 2022 found 14% of them developed symptoms after having COVID.
The study, published in the PLOS ONE journal, explored the relationship between COVID and ME/CFS, a debilitating condition that can include extreme fatigue, post-exertional malaise, sleep issues, and brain fog or dizziness. ME/CFS is the current term for an illness known in the past as chronic fatigue syndrome.
“Our results offer a snapshot in time, and find that in 2022, 14% of people who had ME/CFS-like illness developed it after COVID,” said senior author Jacek Skarbinski, MD, a research scientist with the Kaiser Permanente Division of Research and infectious diseases physician with The Permanente Medical Group. “We can’t yet say whether COVID added to the overall incidence of ME/CFS. We expect to know more about the interplay of these conditions in the next stages of our study.”
The researchers surveyed 9,825 KPNC patients about their symptoms and their COVID history. “We cast a wide net to find people who might have symptoms that fit the definition of ME/CFS but had not been diagnosed,” said lead author Mariah S. Wood, a data analyst with the Division of Research.
“For a condition like ME/CFS, which is often under-diagnosed in clinical settings, carrying out surveys with individuals is the best way to identify those who may have ME/CFS,” Skarbinski said. The research team will continue surveying the patients over time.
Overall, the researchers estimated that 1.67%, or 45,892, of 2.7 million adult KPNC members had ME/CFS-like syndrome during the study period, July to October 2022. Of those, 14.1% developed the illness after COVID.
The patients whose ME/CFS-like syndrome began after COVID were more likely to be unvaccinated against COVID-19 and to have had COVID before June 2021.
All the patients with ME/CFS-like illness had significant impairment in physical, mental, emotional, social, and occupational functioning compared with patients without the illness. “It’s hard to over-estimate the dramatic impact this illness has on their lives,” Skarbinski said.
Those whose symptoms began after COVID were more likely to have better physical functioning but greater anxiety and less energy than those with ME/CFS-like illness whose symptoms were not associated with COVID.
Other research has suggested a connection with COVID, and that there could be overlap between patients with ME/CFS and those reporting post-COVID-19 conditions, also known as Long COVID. Skarbinski said this study could shed light on some of those questions as it continues, building on baseline data in this initial report.
The study was funded by the Centers for Disease Control and Prevention and the Serological Sciences Network of the National Institutes of Health.
Additional co-authors were Nicole Halmer, Laura B. Amsden, MSW, MPH, and Joshua R. Nugent, PhD, of the Division of Research; Jeanne Bertolli, Jin-Mann S. Lin, Shua J. Chai, MD, Jennifer R. Cope, and Elizabeth R. Unger of the CDC; Gretchen Rothrock and Joelle Nadle of the California Emerging Infections Program; and Jamila H. Champsi, MD, and James Yang, MD, of The Permanente Medical Group.
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About the Kaiser Permanente Division of Research
The Kaiser Permanente Division of Research conducts, publishes and disseminates epidemiologic and health services research to improve the health and medical care of Kaiser Permanente members and society at large. It seeks to understand the determinants of illness and well-being, and to improve the quality and cost-effectiveness of health care. Currently, DOR’s 600-plus staff is working on more than 450 epidemiological and health services research projects. For more information, visit divisionofresearch.kaiserpermanente.org or follow us @KPDOR.
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