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Observational Study
. 2025 Apr;40(5):1085-1094.
doi: 10.1007/s11606-024-09290-9. Epub 2025 Jan 13.

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study

Suzanne D Vernon  1 , Tianyu Zheng  2 , Hyungrok Do  3 , Vincent C Marconi  4 , Leonard A Jason  5 , Nora G Singer  6 , Benjamin H Natelson  7 , Zaki A Sherif  8 , Hector Fabio Bonilla  9 , Emily Taylor  10 , Janet M Mullington  11 , Hassan Ashktorab  12 , Adeyinka O Laiyemo  12 , Hassan Brim  13 , Thomas F Patterson  14 , Teresa T Akintonwa  15 , Anisha Sekar  16 , Michael J Peluso  17 , Nikita Maniar  18 , Lucinda Bateman  19 , Leora I Horwitz  20 , Rachel Hess  2   21 ; NIH Researching COVID to Enhance Recovery (RECOVER) Consortium
Affiliations
Observational Study

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study

Suzanne D Vernon et al. J Gen Intern Med. 2025 Apr.

Abstract

Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. How often people develop ME/CFS after SARS-CoV-2 infection is unknown.

Objective: To determine the incidence and prevalence of post-COVID-19 ME/CFS among adults enrolled in the Researching COVID to Enhance Recovery (RECOVER-Adult) study.

Design, setting, and participants: RECOVER-Adult is a longitudinal observational cohort study conducted across the U.S. We included participants who had a study visit at least 6 months after infection and had no pre-existing ME/CFS, grouped as (1) acute infected, enrolled within 30 days of infection or enrolled as uninfected who became infected (n=4515); (2) post-acute infected, enrolled greater than 30 days after infection (n=7270); and (3) uninfected (1439).

Measurements: Incidence rate and prevalence of post-COVID-19 ME/CFS based on the 2015 Institute of Medicine ME/CFS clinical diagnostic criteria.

Results: The incidence rate of ME/CFS in participants followed from time of SARS-CoV-2 infection was 2.66 (95% CI 2.63-2.70) per 100 person-years while the rate in matched uninfected participants was 0.93 (95% CI 0.91-10.95) per 100 person-years: a hazard ratio of 4.93 (95% CI 3.62-6.71). The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants. Post-exertional malaise was the most common ME/CFS symptom in infected participants (24.0%, 2830 of 11,785). Most participants with post-COVID-19 ME/CFS also met RECOVER criteria for long COVID (88.7%, 471 of 531).

Limitations: The ME/CFS clinical diagnostic criteria uses self-reported symptoms. Symptoms can wax and wane.

Conclusion: ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection. RECOVER provides an unprecedented opportunity to study post-COVID-19 ME/CFS.

Keywords: ME/CFS; Post-COVID-19 ME/CFS; RECOVER; SARS-CoV-2.

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Conflict of interest statement

Declarations:. Conflict of Interest:: Dr. Horwitz reported receiving grants from the NIH and serving on an ad hoc committee for the National Academy of Medicine. Dr. Marconi reported receiving grants from the Centers for Disease Control and Prevention, Veteran Affairs, and the NIH; grants, personal fees, nonfinancial support, and other from Eli Lilly, Merck, and Gilead; grants and personal fees from ViiV; and nonfinancial support from Bayer. Dr. Singer reported receiving grants from Case Western Reserve University and MetroHealth. Dr. Sherif reported receiving research grants from NIH and American Cancer Society. Dr. Mullington reported receiving grants from the NIH and Open Medicine Foundation and speaker and book chapter contribution for Idorsia Pharmaceuticals. Dr Laiyemo reported receiving grants from the NIH. Dr. Peluso reported receiving personal fees from Gilead Sciences and AstraZeneca. Dr. Hess reported receiving grants from the NIH and being a member of a data and safety monitoring board for Astellas Pharmaceuticals. Disclaimer:: The funders had no role in the design and conduct of the study; collection, management, analysis, and interpretation of the data; preparation, review, or approval of the manuscript; and decision to submit the manuscript for publication. The content is solely the responsibility of the authors and does not necessarily represent the official views of the RECOVER Program, the NIH or other funders.

Figures

Figure 1
Figure 1
The ME/CFS clinical diagnostic criteria was applied to both infected and uninfected participants in the RECOVER Adult study group
Figure 2
Figure 2
Percent of infected and uninfected participants with ME/CFS symptoms
Figure 3
Figure 3
PASC cluster assignments at the first qualifying visit for post-COVID-19 ME/CFS and ME/CFS-like participants
See this image and copyright information in PMC

References

    1. Hickie I, Davenport T, Wakefield D et al. Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. BMJ. 2006;333(7568):575. 10.1136/bmj.38933.585764.AE - DOI - PMC - PubMed
    1. Horwitz LI, Thaweethai T, Brosnahan SB et al. Researching COVID to Enhance Recovery (RECOVER) adult study protocol: Rationale, objectives, and design. Reyes LF ed. Plos One. 2023;18(6):e0286297. 10.1371/journal.pone.0286297 - DOI - PMC - PubMed
    1. Thaweethai T, Jolley SE, Karlson EW et al. Development of a Definition of Postacute Sequelae of SARS-CoV-2 Infection. JAMA. 2023;329(22):1934. 10.1001/jama.2023.8823 - DOI - PMC - PubMed
    1. Institute of Medicine. Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Published online 2015.
    1. WHO COVID-19: Case Definitions. World Health Organization; 2022. WHO/2019-nCoV/Surveillance_Case_Definition/2022.1

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