Adults' experiences of life with chronic fatigue syndrome/ME
Literature Review: Studies investigating the Quality of Life (QoL) and experiences of people with CFS/ME are reviewed. A number of standardised measures of QoL have been used with people with CFS/ME. Studies have consistently shown significantly reduced QoL across all domains, compared to the general population and other chronic illness groups. The mainly qualitative literature describing the experiences of people with CFS/ME highlighted the impact of symptoms, experiences of not being believed, difficulties obtaining a diagnosis and the effects of the illness on identity. The conceptual and methodological limitations of the studies are discussed. The relevance of the findings to theoretical models of CFS/ME and chronic illness are considered and recommendations made for future research. Research Report: A qualitative study was undertaken to explore the experiences of people with CFS/ME. Semi-structured interviews were completed with eight women. The results were analysed using Interpretative Phenomenological Analysis. Participants described initially feeling overwhelmed by their illness. Attempts to seek help and advice resulted in experiences of being let down and disbelieved. Participants reacted to this by seeking information and identifying sources of self-help, this enabled them to increase their sense of control and begin to accept their illness. The relationship of the results to existing research and theoretical models of adjustment to CFS and other chronic illnesses is discussed.