Approaching recovery from myalgic encephalomyelitis and chronic fatigue syndrome: Challenges to consider in research and practice

• Published in: Journal of health psychology Vol. 24; no. 10; pp. 1412 - 1424
• Main Authors: Devendorf, Andrew R, Jackson, Carly T, Sunnquist, Madison, Jason, Leonard A
• Format: Journal Article
• Language: English
• Published: London, England SAGE Publications 01.09.2019; SAGE PUBLICATIONS, INC
• Subjects: Chronic fatigue syndrome; Clinical outcomes; Encephalomyelitis; Fatigue; Illnesses; Interviews; Misdiagnosis; Physicians; Recovery; Selection bias; assessment; qualitative methods; chronic fatigue syndrome; physician; myalgic encephalomyelitis; recovery; illness experience; myalgic encephalomyelitis/chronic fatigue syndrome
• ISSN: 1359-1053; 1461-7277
• DOI: 10.1177/1359105317742195

There are unique methodological challenges to studying and assessing recovery in myalgic encephalomyelitis and chronic fatigue syndrome. This study explored these challenges through interviewing 13 physicians who treat myalgic encephalomyelitis and chronic fatigue syndrome. Our deductive thematic analysis produced four themes to consider when approaching recovery: lifespan differences in the illness experience; the heterogeneity of myalgic encephalomyelitis and chronic fatigue syndrome—case definitions, etiological stance, and misdiagnosis; patient follow-up and selection bias; and assessment logistics. We discuss how researchers and clinicians can use these considerations when working with patients, drafting recovery criteria, and interpreting treatment outcomes.