• Zara Hasan, Cassandra Kuyvenhoven, Mehreen Chowdhury, Lana Amoudi, Dena Zeraatkar, Jason W Busse, Marina Sadik, and Meredith Vanstone.
• Department of Family Medicine, McMaster University, Hamilton, Ontario, Canada.
• J Eval Clin Pract. 2024 Mar 1; 30 (2): 234242234-242.

Aims And ObjectivesMyalgic encephalomyelitis (ME), also called chronic fatigue syndrome (CFS), is characterised by persistent fatigue, postexertional malaise, and cognitive dysfunction. It is a complex, long-term, and debilitating illness without widely effective treatments. This study describes the treatment choices and experiences of ME/CFS patients who have experienced variable levels of recovery.MethodInterpretive description study consisting of semi-structured qualitative interviews with 33 people who met the US Centers for Disease Control (2015) diagnostic criteria for ME/CFS and report recovery or symptom improvement.ResultsTwenty-six participants endorsed partial recovery, and seven reported full recovery from ME/CFS. Participants reported expending significant time and energy to identify, implement, and adapt therapeutic interventions, often without the guidance of a medical practitioner. They formulated individualised treatment plans reflecting their understanding of their illness and personal resources. Most fully recovered participants attributed their success to mind-body approaches.ConclusionPatients with ME/CFS describe independently constructing and managing treatment plans, due to a lack of health system support. Stigmatised and dismissive responses from clinicians precipitated disengagement from the medical system and prompted use of other forms of treatment.© 2023 The Authors. Journal of Evaluation in Clinical Practice published by John Wiley & Sons Ltd.

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