Factors affecting the characterization of Post-Exertional Malaise derived from patient input by Carly S Holtzman, Claire Fisher, Shaun Bhatia, Leonard A Jason, in Journal of Health Disparities Research and Practice: Vol. 13 : Iss. 2 , Article 5.

Research abstract:

The National Institutes of Health/Center for Disease Control and Prevention (NIH/CDC) Common Data Elements (CDE) established a post-exertional malaise (PEM) workgroup with the task of describing PEM and recommending a standardized way of assessing it in patients with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS).

As a stigmatized group, patients with ME/CFS are in need of instruments which can properly describe their symptomatic experiences, which can help reduce the disparity between illness seriousness and appropriate attention from healthcare.

The current study explored attitudes and preferences among 115 patients with ME/CFS who participated in the creation of a patient-driven instrument to measure PEM, the key symptom of the illness. Themes that emerged from the qualitative analyses of patient feedback focused on how their illness was experienced; their access to care; problems with physicians, researchers, and research methods; and expressions of gratitude for the collaborative process.

Domains that were most important to the patient community were identified in the effort to create a comprehensive measure of PEM. Benefits of community-based action research are discussed.

Four themes emerged from the Facebook discussions regarding PEM:
(1) illness experience;
(2) consequences;
(3) issues in the field;
(4) attitudes and interactions.
We explain the components of each theme and illustrate how patients’ Facebook comments were taken into consideration during the participatory process of creating a PEM questionnaire.

Study conclusion:

Overall, analyzing Facebook comments related to the experience of PEM has led to new
insights, which in turn allowed us to create a comprehensive, patient-driven questionnaire assessing PEM. Our goal was to identify the most important aspects of PEM, as well as how the patient community interacted with each other via Facebook.

This action-oriented process has led us to believe that it is crucial to collaborate with the patient community which can result in a more insightful, accurate and valid perspective of the illness.

This qualitative analysis using community based action research has made substantial contributions to the study of PEM, and ME/CFS in general. It is our hope to provide a model of how scientists and patients in this area can work together in the development of methods and instruments to better assess this illness.

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