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Assessment of Post-Exertional Malaise (PEM) in Patients with Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS): A Patient-Driven Survey

Authors :
Carly S. Holtzman
Shaun Bhatia
Joseph Cotler
Leonard A. Jason
Source :
Diagnostics, Vol 9, Iss 1, p 26 (2019)
Publication Year :
2019
Publisher :
MDPI AG, 2019.

Abstract

Considerable controversy has existed with efforts to assess post-exertional malaise (PEM), which is one of the defining features of myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS). While a number of self-report questionnaires have been developed to assess this symptom, none have been comprehensive, and a recent federal government report has recommended the development of a new PEM measure. The current study involved a community-based participatory research process in an effort to develop a comprehensive PEM instrument, with critical patient input shaping the item selection and overall design of the tool. A survey was ultimately developed and was subsequently completed by 1534 members of the patient community. The findings of this survey suggest that there are key domains of this symptom, including triggers, symptom onset, and duration, which have often not been comprehensively assessed in a previous PEM instrument. This study indicates that there are unique benefits that can be derived from patients collaborating with researchers in the measurement of key symptoms defining ME and CFS.

Details

Language :
English
ISSN :
20754418 and 32426518
Volume :
9
Issue :
1
Database :
Directory of Open Access Journals
Journal :
Diagnostics
Publication Type :
Academic Journal
Accession number :
edsdoj.14fd086d54d95b324265189ceeeb4
Document Type :
article
Full Text :
https://doi.org/10.3390/diagnostics9010026