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ABSTRACT
Background: One of the cardinal symptoms of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) is post-exertional malaise (PEM). Almost all ME and CFS case definitions mention this symptom, and there have been several efforts to measure it with self-report items. However, controversy has surrounded how patients feel about the measurement of this symptom.
Purpose: The current study presents data on a large patient sample concerning their feelings regarding different aspects of PEM.
Results: Findings indicated that the majority of patients did support certain wordings of both the precipitants and consequences of PEM. In addition, considerable approval was also found for a number of ways to phrase items assessing PEM. Overall, findings indicated that screening items from the DePaul Symptom Questionnaire (DSQ) were able to identify 97% of patients, which was higher than any other item. However, the PEM question that was most acceptable from patients was from Ramsay, but other highly endorsed questions were from the ME-ICC and DSQ.
Conclusions: As there has not yet been an instrument constructed specifically to measure the complexity of this symptom, these results could be used to develop a prototype for such a questionnaire.
Disclosure statement
No potential conflict of interest was reported by the authors.
Notes
1 The following text was also included in the PEM CDE description but was not included in the patient survey's version of the CDE material, according to Mary Dimmock (Personal Communication, 2 February 2018): Some other precipitants of PEM that have been identified include positional changes and emotional stress. In some instances, the specific precipitant cannot be identified. The threshold for a precipitant to trigger PEM can vary between individuals as well as within the same individual, at different times during their illness.
Additional information
Notes on contributors
L. A. Jason
L. A. Jason, Ph.D., is a Professor of Psychology and Director of the Center for Community Research at DePaul University. He has published over 700 articles and chapters on community psychology, chronic fatigue syndrome, Myalgic encephalomyelitis, and Oxford House recovery homes for substance abuse.
S. L. McManimen
S. L. McManimen, BS, was a Research Assistant at the Center for Community Research and is currently a graduate student at Idaho State University. Her interests include chronic illnesses and early detection of illnesses.
M. Sunnquist
M. Sunnquist, MA, is an advanced graduate student in the clinical-community program at DePaul University. She has explored diagnostic issues and case definitions, and how they can influence the outcomes of models of etiology for ME and CFS.
C. S. Holtzman
C. S. Hotzman, BA is a Research Assistant at the Center for Community Research at DePaul University. She has interests in exploring parent–child relationships in reporting ME and CFS symptoms and functioning.