Patient perceptions of post exertional malaise

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.