Exploring barriers and facilitators to effective self-management in individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: an Interpretative Phenomenological Analysis

The present study explored the lived experiences of individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome to identify barriers and facilitators to effective self-management. Five female participants (mean age; 33.2 ± 13.00 years) with a formal diagnosis of ME/CFS, were recruited via social media. Semi-structured interviews were conducted and analysed using Interpretative Phenomenological Analysis. Barriers to self-management were identified as one key theme, comprising two sub-themes: i) navigating competing and cyclical symptom burdens and ii) the need for self-advocacy. Facilitators of self-management were identified under two main themes: adapting to manage symptoms, with sub-themes of i) navigating symptom management through trial and error and ii) growing confidence over time, and social and practical support, which included i) family and partner support and ii) workplace flexibility. Key barriers included the physical, emotional, and social toll of symptoms, while facilitators such as trial-and-error, growing confidence, and social and workplace support were crucial. Although self-advocacy is essential, it emerged as both a necessary and burdensome strategy. To improve the quality of life of individuals with ME/CFS, there is an urgent need to reduce the reliance on extensive self-advocacy which may help to alleviate this burden by making healthcare systems and support structures more responsive, accessible and patient-centred.