Myalgic Encephalomyelitis/Chronic Fatigue Syndrome After SARS-CoV-2 Infection
Authors: Unger Elizabeth R. , Lin Jin-Mann S. , Wisk Lauren E. , Yu Huihui , L’Hommedieu Michelle , Lavretsky Helen , Montoy Juan Carlos C. , Gottlieb Michael A. , Rising Kristin L. , Gentile Nicole L. , Santangelo Michelle , Venkatesh Arjun K. , Rodriguez Robert M. , Hill Mandy J. , Geyer Rachel E. , Kean Efrat R. , Saydah Sharon , McDonald Samuel A. , Huebinger Ryan , Idris Ahamed H. , Dorney Jocelyn , Hota Bala , Spatz Erica S. , Stephens Kari A. , Weinstein Robert A. , Elmore Joann G. , Koo Katherine , Derden Antonia , Gatling Kristyn , Guzman Diego , Yang Geoffrey , Kaadan Amro (Marshall) , Hassaballa Minna , Jerger Ryan , Ahmed Zohaib , Choi Michael , Pavlopoulos Ariana , Kesari Avinash , Gaylord Caitlin A , Gomez Chloe , Lomas Elizabeth , Boliboun Phouthavang (Jimmie) , Patel Krisna , Malicki Caitlin , Lin Zhenqiu , Li Shu-Xia , Ebna Mannan Imtiaz , Yang Zimo , Liu Mengni , Ulrich Andrew , Kinsman Jeremiah , Pierce Senyte , Puente Xavier , Salah Wafa , Nichol Graham , Anderson Jill , Schiffgens Mary , Morse Dana , Adams Karen , Stober Tracy , Maat Zenoura , O’Laughlin Kelli N. , Willis Michael , Zhang Zihan , Chang Gary , Lyon Victoria , Klabbers Robin E. , Ruiz Luis , Malone Kerry , Park Jasmine , Renzi Nicole , Watts Phillip , Kelly Morgan , Schaeffer Kevin , Grau Dylan , Cheng David , Shutty Carly , Charlton Alex , Shughart Lindsey , Shughart Hailey , Amadio Grace , Miao Jessica , Hannikainen Paavali , Chandler Chris , Diaz Roldan Kate , Eguchi Megan , Moreno Raul , Wang Ralph C. , Kemball Robin , Chan Virginia , Lara Chavez Cecilia , Wong Angela , Arreguin Mireya , Kane Arun , Nikonowicz Peter , Sapp Sarah , Gallegos David , Martin Katherine R. , Plumb Ian D. , Hall Aron J. , Briggs-Hagen Melissa ,   Innovative Support for Patients with SARS-CoV-2 Infections Registry (INSPIRE) Group
Published: July 2024

ImportanceChronic symptoms reported following an infection with SARS-CoV-2, such as cognitive problems, overlap with symptoms included in the definition of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).ObjectiveTo evaluate the prevalence of ME/CFS-like illness subsequent to acute SARS-CoV-2 infection, changes in ME/CFS symptoms through 12 months of follow-up, and the association of ME/CFS symptoms with SARS-CoV-2 test results at the acute infection–like index illness.Design, Setting, and ParticipantsThis prospective, multisite, longitudinal cohort study (Innovative Support for Patients with SARS-CoV-2 Infections Registry [INSPIRE]) enrolled participants from December 11, 2020, to August 29, 2022. Participants were adults aged 18 to 64 years with acute symptoms suggestive of SARS-CoV-2 infection who received a US Food and Drug Administration–approved SARS-CoV-2 test at the time of illness and did not die or withdraw from the study by 3 months. Follow-up surveys were collected through February 28, 2023.ExposureCOVID-19 status (positive vs negative) at enrollment.Main Outcome and MeasuresThe main outcome was the weighted proportion of participants with ME/CFS-like illness based on the 2015 Institute of Medicine clinical case definition using self-reported symptoms.ResultsA total of 4378 participants were included in the study. Most were female (3226 [68.1%]). Mean (SD) age was 37.8 (11.8) years. The survey completion rates ranged from 38.7% (3613 of 4738 participants) to 76.3% (1835 of 4738) and decreased over time. The weighted proportion of participants identified with ME/CFS-like illness did not change significantly at 3 through 12 months of follow-up and was similar in the COVID-19–positive (range, 2.8%-3.7%) and COVID-19–negative (range, 3.1%-4.5%) groups. Adjusted analyses revealed no significant difference in the odds of ME/CFS-like illness at any time point between COVID-19–positive and COVID-19–negative individuals (marginal odds ratio range, 0.84 [95% CI, 0.42-1.67] to 1.18 [95% CI, 0.55-2.51]).Conclusions and RelevanceIn this prospective cohort study, there was no evidence that the proportion of participants with ME/CFS-like illness differed between those infected with SARS-CoV-2 vs those without SARS-CoV-2 infection up to 12 months after infection. A 3% to 4% prevalence of ME/CFS-like illness after an acute infection–like index illness would impose a high societal burden given the millions of persons infected with SARS-CoV-2.