ME/CFS and Post-Exertional Malaise among Patients with Long COVID

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 70.57% met criteria for ME/CFS and of those who did not report they had ME/CFS, 29.43% 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.

COVID-19, post-acute COVID-19 syndrome (PACS, “long COVID”) and post-COVID-19 vaccination syndrome (PCVS, “post-COVIDvac-syndrome”): Similarities and differences

“…According to the innovative study of Patterson et al [307] , the predominant (non-severe) shared symptoms of PACS and PACVS are fatigue, neuropathy, brain fog and headache, where shortness of breath and loss of taste/smell is less frequent in PACVS compared to PACS. The symptoms associated with the myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have a significant overlap with the symptoms of PACS [309] , [310] , [311] , [312] , [313] and PACVS (see for example the Individual Case Safety Reports for “chronic fatigue syndrome” associated with COVID-19 vaccination documented in the EudraVigilance European Database for Suspected Adverse Drug Reaction Reports, EDSADRR) [314] . Unfortunately, studies that explicitly investigate the occurrence of ME/CFS after COVID-19 vaccination, i.e.…”

An Exploratory Factor Analysis of Long Covid

“…The information patients provided was adjudicated among the research team, a final list created, and shared with patients for additional feedback. This feedback was evaluated by the research team at the Center for Community Research, DePaul University, and a decision was made on a final list of 38 symptoms [41].…”

“…Participants were removed if they answered less than 90% of the DSQ-COVID symptoms For the remaining participants, missing values were replaced by using the median of responses for the symptom, which is described in detail in a publication by Jason and Dorri [41].…”

A Mixed Methods System for the Assessment of Post Exertional Malaise in Encephalomyelitis/Chronic Fatigue Syndrome

“…PEM patients describe the experience as all-encompassing with symptoms affecting every part of the body, difficult to predict or manage, and requiring complete bedrest to recover. More recently, evidence has emerged of PEM in persons with long COVID (2,3). While PEM has a wide range of symptoms, three core symptoms have been identified: exhaustion, cognitive difficulties, and neuromuscular complaints (4).…”