Why patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis improve or deteriorate with graded exercise therapy
Embargoed until: 2100-01-01
Embargoed until: 2100-01-01
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Background: Graded exercise therapy, GET, (along with cognitive behaviour therapy, CBT) is one of only two treatments recommended by the 2007 National Institute of Health Care Excellence (NICE) CFS/ME guidelines as having an evidence-base. NICE describes GET as an “approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education”. However, lay surveys show that GET is considered unacceptable or harmful by many patients. Further investigation is needed to understand why some people seem to benefit from GET, and not others. Aims: The study aimed to answer the question, “What are the differences and similarities in treatment perceptions and experiences of GET, among participants who improved and got worse in a pragmatic randomised controlled trial of Guided graded Exercise Self-help (GETSET).”? Method: This qualitative, one-to-one interview study was situated within the GETSET Trial. A sub-sample of patients were stratified into improved and deteriorated and recruited: 9 were better, 10 were worse (according to Clinical Global Impression (CGI) scale). Interviews were semi-structured to ensure all participants discussed all relevant topics to the study. Interviews were transcribed in full and a thematic, “constant comparison” approach was used in the analysis, using NVivo software to ensure all relevant data were analysed. Results: Participants generally found GET challenging, especially during initiation, as participants had to wait considerable time for any benefit. The deteriorated group reported experiencing more barriers to GET, including a worse exacerbation of symptoms in response to GET, which interfered with their life commitments (e.g. work, caring duties). They also reported greater interference with GET from comorbid conditions and other things happening in their lives. Additionally, they had had CFS for considerably longer than the improved group. The improved group on the other hand reported more facilitators to doing GET (e.g. using other therapies), and were more likely to report exceptionally high levels of motivation. Paradoxically, GET engagement could be supported by having worse levels of CFS/ME, as participants felt too ill to do activities that could distract them from GET. Conclusion: Our findings flesh out the deeper meanings behind polarized experiences of GET, pointing to the specific conditions under which GET is most likely to work, and how health professionals could assist patients to benefit from GET.