Objective
To review and synthesize findings across qualitative studies on Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).
Methods
Articles were systematically reviewed and analyzed within a meta-analytic framework. Analyses included a multi-perspective (e.g., individual, physician, familial) examination of ME/CFS, as well as a comparative analysis of ME/CFS versus other chronic conditions.
Results
Thirty-four (34) qualitative studies on ME/CFS were identified and included. Findings include three substantive thematic areas that focus on studies concerning: (1) experiences of people with ME/CFS, (2) experiences of physicians, and (3) themes that intersect both of these groups. For patients, illness development influenced identity, reductions in functioning, and coping. Physician-specific themes described lack of awareness about the illness and recommended improvement in medical education. Themes that intersected expressed issues with diagnosis which creates tensions and fuels the stigmatization of ME/CFS.
Conclusions
Findings indicate multilayered, context-specific experiences and ways in which both people with ME/CFS, as well as the people involved in their lives, such as family or the medical community, understand their illness. Future qualitative studies should coalesce the various facets of the ME/CFS experience, the network members of people with ME/CFS, and the sociocultural environment through which the illness is understood.
Practice implications
Health care professionals can gain unique insight from patient experiences, allowing for more accurate diagnoses and treatment recommendations.