Incidence and prevalence of post-COVID-19 myalgic encephalomyelitis: A report from the observational RECOVER-Adult study

Vernon, SD; Zheng, T; Do, H; et al., Journal of General Internal Medicine , April 2025

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April 2025
Journal of General Internal Medicine

Short Summary

This RECOVER study found that adults who had COVID-19 were more likely to develop a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) compared to those who didn’t have COVID-19. ME/CFS can be very severe and similar to many forms of Long COVID. Even small amounts of effort can lead to days or weeks of physical and mental exhaustion in people with ME/CFS. Researchers studied about 13,000 RECOVER participants and found that 4.5% of people who had COVID-19 in the study later developed ME/CFS, while only 0.6% of those who didn't have COVID-19 got ME/CFS. These findings highlight the need for healthcare professionals to be aware that ME/CFS can develop after having COVID-19.

This summary was prepared by the RECOVER Initiative.

Publication Details

DOI: 10.1007/s11606-024-09290-9

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.

Authors

Suzanne D Vernon, Tianyu Zheng, Hyungrok Do, Vincent C Marconi, Leonard A Jason, Nora G Singer, Benjamin H Natelson, Zaki A Sherif, Hector Fabio Bonilla, Emily Taylor, Janet M Mullington, Hassan Ashktorab, Adeyinka O Laiyemo, Hassan Brim, Thomas F Patterson, Teresa T Akintonwa, Anisha Sekar, Michael J Peluso, Nikita Maniar, Lucinda Bateman, Leora I Horwitz, Rachel Hess, NIH Researching COVID to Enhance Recovery (RECOVER) Consortium

Keywords

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

Incidence and prevalence of post-COVID-19 myalgic encephalomyelitis: A report from the observational RECOVER-Adult study

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