ME/CFS and post-exertional malaise among patients with Long COVID
Jason, LA; Dorri, JA, Neurology International
Published
December 2022
Journal
Neurology International
Abstract
This study sought to ascertain the prevalence of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) among a sample of 465 patients with Long COVID. The participants completed three questionnaires: (1) a new questionnaire measuring both the frequency and severity of 38 common symptoms of COVID and Long COVID, (2) a validated short form questionnaire assessing ME/CFS, and (3) a validated questionnaire measuring post-exertional malaise. The population was predominantly white, female, and living in North America. The mean duration since the onset of COVID-19 symptoms was 70.5 weeks. Among the 465 participants, 58% met a ME/CFS case definition. Of respondents who reported that they had ME/CFS only 71% met criteria for ME/CFS and of those who did not report they had ME/CFS, 40% nevertheless did meet criteria for the disease: both over-diagnosis and under-diagnosis were evident on self-report. This study supports prior findings that ME/CFS occurs with high prevalence among those who have persistent COVID-19 symptoms.
Authors
Leonard A Jason, Joseph A Dorri
Keywords
COVID-19; Long COVID; ME/CFS; case definition
Short Summary
Many people who have had COVID-19 continue to experience symptoms for months or even years afterward. This condition, known as Long COVID, shares many similarities with another chronic illness called ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). ME/CFS causes post-exertional malaise (PEM), which is extreme exhaustion that gets worse after physical or mental activity, along with problems sleeping, thinking clearly, and managing pain. Researchers wanted to understand how many people with Long COVID might also have ME/CFS and PEM to help doctors better identify and treat these conditions.
The study included 465 adults with Long COVID who completed online questionnaires about their symptoms. Participants had been experiencing COVID symptoms for an average of about 70 weeks. They answered questions about how often and how severely they experienced 38 different symptoms common to COVID and Long COVID. They also completed validated questionnaires specifically designed to identify ME/CFS and measure PEM. Most participants were white women living in North America.
The researchers found that 58% of people with Long COVID met the criteria for ME/CFS. Many people were unsure about their own condition. Among those who said they had ME/CFS, only 71% actually met the diagnostic criteria. Meanwhile, 40% of people who said they didn't have ME/CFS actually did meet the criteria. People who met ME/CFS criteria experienced more severe PEM symptoms overall, especially extreme tiredness, feeling worse after activity, and difficulty thinking or concentrating. They also reported greater disability in their daily activities compared to those without ME/CFS.
This research shows that ME/CFS is common among people with Long COVID. The findings suggest that many people may not realize they have ME/CFS, highlighting the need for better screening tools in medical settings. Understanding this connection could help doctors provide more targeted care and support for people experiencing persistent symptoms after COVID-19.