A Scoping Review on Post-Exertional Malaise in ME/CFS and Long COVID Patients Restricted; Files Only
Tsai, Wesley (Spring 2025)
Abstract
Background:
Post-exertional malaise (PEM) is a defining symptom of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID. PEM is characterized by the worsening of symptoms following minimal physical or cognitive exertion. Despite its significance in ME/CFS and Long COVID, PEM is poorly defined and inconsistently assessed across studies.
Objective:
The objective of this scoping review is to understand and describe the experience of post-exertional malaise symptoms to inform the development of patient-reported outcome measures that capture unique characteristics of PEM for assisting in the diagnostic process of PEM in clinical practice.
Methods:
A comprehensive literature search was conducted across five databases (APA PsycInfo (EBSCO), CINAHL (EBSCO), Embase.com (Elsevier), PubMed, and Web of Science Core Collection (Clarivate)), to identify peer-reviewed studies involving adult participants with ME/CFS, CFS, or Long COVID. Key data were extracted from the studies and descriptive analyses of the data were performed.
Results:
Sixty-five studies were included. Most were conducted in the U.S. with primarily white and female participants. The DePaul Symptom Questionnaire (DSQ) was the most used tool for assessing PEM. Interventions were few and ICF categorization of key findings showed 88% of findings related to body function, 29% to activity limitations, and 9% to participation restrictions.
Conclusion:
Findings highlight a need for standardized PEM assessment tools, broader demographic representation, and more intervention research. Improving PEM measurement is essential for improving diagnosis and care for ME/CFS and Long COVID patients.
Table of Contents
Table of Contents
Abstract……………………………………………………………………………………………1
Introduction….………………………………………………………………………………….…2
Materials and Methods……………………………………………………………….……………3
Results…………………………………………………………………………….……….………4
Discussion…………………………………………………………………………………………6
References…………………………………………………………………………………..……10
Figures.…………………………………………………………………………………….….….16
Supplemental Material…………………………………………………………………………...31
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