TY - JOUR
T1 - Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis
T2 - A Report from the Observational RECOVER-Adult Study
AU - on behalf of on behalf of the NIH Researching COVID to Enhance Recovery (RECOVER) Consortium
AU - Vernon, Suzanne D.
AU - Zheng, Tianyu
AU - Do, Hyungrok
AU - Marconi, Vincent C.
AU - Jason, Leonard A.
AU - Singer, Nora G.
AU - Natelson, Benjamin H.
AU - Sherif, Zaki A.
AU - Bonilla, Hector Fabio
AU - Taylor, Emily
AU - Mullington, Janet M.
AU - Ashktorab, Hassan
AU - Laiyemo, Adeyinka O.
AU - Brim, Hassan
AU - Patterson, Thomas F.
AU - Akintonwa, Teresa T.
AU - Sekar, Anisha
AU - Peluso, Michael J.
AU - Maniar, Nikita
AU - Bateman, Lucinda
AU - Horwitz, Leora I.
AU - Hess, Rachel
N1 - Publisher Copyright:
© The Author(s) 2025.
PY - 2025/4
Y1 - 2025/4
N2 - 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.
AB - 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.
KW - ME/CFS
KW - Post-COVID-19 ME/CFS
KW - RECOVER
KW - SARS-CoV-2
UR - https://www.scopus.com/pages/publications/105002975812
UR - https://www.scopus.com/inward/citedby.url?scp=105002975812&partnerID=8YFLogxK
U2 - 10.1007/s11606-024-09290-9
DO - 10.1007/s11606-024-09290-9
M3 - Article
C2 - 39804551
AN - SCOPUS:105002975812
SN - 0884-8734
VL - 40
SP - 1085
EP - 1094
JO - Journal of General Internal Medicine
JF - Journal of General Internal Medicine
IS - 5
M1 - 917019
ER -