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

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

doi:10.1007/s11606-024-09290-9

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

J Gen Intern Med. 2025 Jan 13. doi: 10.1007/s11606-024-09290-9. Online ahead of print.

Authors

Suzanne D Vernon¹, Tianyu Zheng², Hyungrok Do³, Vincent C Marconi⁴, Leonard A Jason⁵, Nora G Singer⁶, Benjamin H Natelson⁷, Zaki A Sherif⁸, Hector Fabio Bonilla⁹, Emily Taylor¹⁰, Janet M Mullington¹¹, Hassan Ashktorab¹², Adeyinka O Laiyemo¹², Hassan Brim¹³, Thomas F Patterson¹⁴, Teresa T Akintonwa¹⁵, Anisha Sekar¹⁶, Michael J Peluso¹⁷, Nikita Maniar¹⁸, Lucinda Bateman¹⁹, Leora I Horwitz²⁰, Rachel Hess^{2

21}; NIH Researching COVID to Enhance Recovery (RECOVER) Consortium

Affiliations

¹ Bateman Horne Center, 24 S 1100 E Suite 205, Salt Lake City, UT, USA. [email protected].
² Department of Population Health Sciences, Spencer Fox Eccles School of Medicine at the University of Utah, Salt Lake City, UT, USA.
³ Department of Population Health at NYU Grossman School of Medicine, New York University, New York, NY, USA.
⁴ Rollins School of Public Health, Atlanta Veterans Affairs Medical Center, and the Emory Vaccine Center, Emory University School of Medicine, Atlanta, GA, USA.
⁵ Center for Community Research, DePaul University, Chicago, IL, USA.
⁶ Division of Rheumatology, The MetroHealth System, Case Western Reserve University, Cleveland, OH, USA.
⁷ Pain and Fatigue Study Center, Department of Neurology, Icahn School of Medicine at Mount Sinai, New York, NY, USA.
⁸ Department of Biochemistry & Molecular Biology, District of Columbia, Howard University College of Medicine, Washington, USA.
⁹ Department of Medicine, Division of Infectious Diseases, Stanford University, Palo Alto, CA, USA.
¹⁰ Solve ME/CFS Initiative, Glendale, CA, USA.
¹¹ Department of Neurology, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, MA, USA.
¹² Department of Medicine, Division of Gastroenterology, Howard University College of Medicine, Washington, District of Columbia, USA.
¹³ Department of Pathology, Howard University College of Medicine, Washington, District of Columbia, USA.
¹⁴ Division of Infectious Diseases, The University of Texas Health Science Center at San Antonio, San Antonio, TX, USA.
¹⁵ Black COVID Survivors Alliance, Inc, Atlanta, GA, USA.
¹⁶ Patient-Led Research Collaborative, San Francisco, CA, USA.
¹⁷ Division of HIV, Infectious Diseases, and Global Medicine, University of California, San Francisco, CA, USA.
¹⁸ Department of Neurology & Rehabilitation, University of Illinois at Chicago, Chicago, IL, USA.
¹⁹ Bateman Horne Center, 24 S 1100 E Suite 205, Salt Lake City, UT, USA.
²⁰ Division of Healthcare Delivery Science, Department of Population Health, NYU Grossman School of Medicine, New York University, New York, NY, USA.
²¹ Department of Internal Medicine, Spencer Fox Eccles School of Medicine at the University of Utah, Salt Lake City, UT, USA.

PMID: 39804551
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.

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

Abstract

Grants and funding