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

Published: 13 January 2025

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

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.

Read the full preprint article here: https://link.springer.com/article/10.1007/s11606-024-09290-9