Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment.

INTRODUCTION: Chronic fatigue syndrome (CFS) is a chronic illness marked by severe, medically unexplained fatigue. Cognitive behavioural therapy (CBT) moderately improves fatigue and functioning. However, there is debate about recovery and how this should be operationalised. The impact of treatment on how recovery is viewed is also unclear. This study explored how people with CFS receiving CBT viewed recovery and whether these views differed at various stages of treatment. METHODS: A total of 19 people with CFS receiving CBT were recruited from a specialist service in the UK. Purposive sampling was used to ensure a mix of age, gender, ethnicity and treatment stage. Semi-structured interviews were used to gather data and a reflexive thematic analysis was conducted. RESULTS: The sample included 11 (57.9%) females and 8 (42.1%) males, with a mean age of 40 years old (range: 20-63) The mean duration of illness prior to treatment was 60 months (range: 12-142). The following four themes were identified in relation to recovery: (1) a personal process; (2) a reduction in symptoms; (3) a process of rebuilding, regaining, and retaining; (4) disrupting old ways of living. Theme Four was expressed mostly by those at later-treatment stages, suggesting that these emerged during treatment. DISCUSSION: Recovery is a blend of 'clinical recovery', 'personal recovery' and 'illness management' models applied to other chronic conditions. Data suggests that concepts can change, and treatment may result in patients adopting views more in line with 'personal recovery' and 'illness management' models. These more flexible definitions, particularly those comprising changes to pre-illness beliefs and behaviours, new roles, acceptance and strategies to manage symptoms, corresponded with greater hope. Findings may help to inform realistic treatment expectations and contribute to more meaningful outcome measures.