Patient perceptions of post exertional malaise - Jason L.A.

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Patient perceptions of post exertional malaise
L. A. Jason, S. L. McManimen, M. Sunnquist & C. S. Holtzman (2018):
Fatigue: Biomedicine, Health & Behavior
DOI: 10.1080/21641846.2018.1453265
Published online: 21 Mar 2018.

Full text: http://sci-hub.la/10.1080/21641846.2018.1453265

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.
Discussion:
[...]We hope that the discussion generated by the patient poll and this article furthers efforts to develop an
instrument to measure PEM, and our group has already begun the process of constructing a
questionnaire regarding how the NIH/CDC CDE descriptions of PEM could be operationalized.
The patient community has played an active role in this process.
 

Tom Kindlon

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Tom Kindlon

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Tom Kindlon

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Tom Kindlon

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