Long-term experiences of managing Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) : a qualitative study

• Main Author: Williams, Deborah Samantha
• Published: University of the West of England, Bristol 2016
• Subjects: 616
• Online Access: http://ethos.bl.uk/OrderDetails.do?uin=uk.bl.ethos.687203

Background: Frustrations are noted in the management of CFS/ME as it’s a complex and individual condition with no known cure. Despite being a Long-term Condition (LTC) limited research has focused on long-term experiences. This study aims to extend the knowledge of long-term experiences of CFS/ME specifically focusing on management of the condition. Thinking about therapeutic moderators and mechanisms of change, whether management changes throughout the course of the illness and what support people might benefit from. Methods: A qualitative research design, using semi-structured interviews was adopted. Nine participants' were recruited from a specialist CFS/ME Service in the UK who were over 18 years old, had a diagnosis of CFS/ME and reported experiencing fatigue related symptoms for over 5 years. Interviews were audio recorded, transcribed verbatim and analysed using Thematic Analysis. Findings: Three themes; Awareness, Acceptance, Connection and two subthemes; connection with self and connection with others were constructed from the data. An overarching theme of Awareness appeared to facilitate the ability to accept and connect with what was important for people with CFS/ME, enabling people to adapt to living with the condition and achieving a standard of living. Commonalities occurred across all themes of development over time, individuality and ongoing balance or monitoring. Discussion: Findings suggest supporting adults with CFS/ME to become more self-aware of their illness experience and identifying their values will be beneficial at any stage of the illness duration, but particularly important for long-term management. These findings provide further support for tailored treatment plans (NICE, 2007) with some individuals' needing more, or occasional contact with understanding professionals to achieve. The results support the use of acceptance-based interventions in LTC management; specifically Acceptance and Commitment Therapy (ACT) and Focused ACT. Further research into outcomes and experiences of ACT in CFS/ME, and interdisciplinary approaches is advocated.