'It feels sometimes like my house has burnt down, but I can see the sky': A qualitative study exploring patients' views of cognitive behavioural therapy for chronic fatigue syndrome

Abstract

Objectives: Cognitive behavioural therapy (CBT) is currently a first-line treatment for chronic fatigue syndrome (CFS). Even though the results from trials are promising, there is variability in patient outcomes. The aim of this study was to explore the experiences of patients with CFS who undertook CBT at a specialist service for CFS.

Design: This was a qualitative study.

Methods: Thirteen patients with CFS, approaching the end of CBT, participated in semi-structured interviews. In addition, participants were asked to rate their satisfaction with CBT and perceived level of improvement. The data were analysed using inductive thematic analysis.

Results: The majority of participants were satisfied with treatment and reported marked improvements. This was evident from the ratings and corroborated by the qualitative data, yet recovery was in general incomplete. Participants often disclosed mixed feelings towards CBT prior to its start. Behavioural aspects of treatment were found useful, while participants were more ambivalent towards the cognitive aspects of treatment. The tailored nature of CBT and therapist contact were important components of treatment, which provided participants with support and validation. Engagement and motivation were crucial for participants to benefit from CBT, as well as the acceptance of a bio-psychosocial model of CFS. Illness beliefs around CFS were also discussed throughout the interviews, possibly impeding engagement with therapy.

Conclusions: The results suggest that various factors may moderate the effectiveness of CBT, and a greater understanding of these factors may help to maximize benefits gained from CBT. Statement of contribution What is already known on this subject? CBT is effective in reducing CFS symptoms, but not all patients report marked improvements following treatment. Predictors of outcome have been explored in the literature. Few studies have looked at the experience of adult patients with CFS who have had CBT. What does this study add? Findings provide insights as to why variability in CBT-related improvements exists. Beliefs about CFS and CBT may shape engagement and consequently contribute to post-treatment outcomes. Flexibility and sensitivity are necessary from therapists throughout treatment to ensure full engagement.

Keywords: causal attributions; chronic fatigue syndrome; cognitive behavioural therapy; engagement; evaluation; fatigue; illness beliefs; intervention; myalgic encephalopathy; outcomes; psychotherapy; qualitative; thematic analysis.