Individuals’ experience of chronic fatigue syndrome/myalgic encephalomyelitis: An interpretative phenomenological analysis

Abstract

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is a condition of unknown aetiology that consists of symptoms such as fatigue, muscle and joint pain, gastric problems and a range of neurological disturbances. Due to the fact that these symptoms are complaints that most individuals will experience to a varying degree, it seems pertinent to investigate the processes by which those with CFS/ME conceptualise their symptoms and the experience of reaching a diagnosis. Participants were recruited from local CFS/ME support groups. Eight semi-structured telephone interviews were conducted and transcribed and the verbatim transcriptions were analysed according to Interpretative Phenomenological Analysis. Six distinct themes were uncovered that illustrated the participants' experience and perception of their symptoms. These included symptomatology and illness course, interference with daily and working life, frequency of symptoms, external information, diagnosis and treatment. The findings were discussed in terms of internal and external cues related to symptom perception and the discovery that the possession of a diagnosis did not necessarily signify the end of the journey.

What is the Lived Experience of Being Discharged From a Psychiatric Inpatient Stay?

“…IPA has successfully been used to explore a variety of illnesses such as chronic fatigue (Arroll & Senior, 2008), multiple sclerosis and mental health (Pitt, Kilbride, Nothard, Welford, & Morrison, 2007). i.…”

“…In addition, the size reflects other studies that have used similar methodology (cf. Arroll & Senior, 2008).…”

Why do young people with CFS/ME feel anxious? A qualitative study

“…This is exacerbated by the debate over the name (CMO report, 2002). Experiences of stigma and a de-legitimisation of the person's subjective experience seem common (Arroll & Senior, 2008;Dickson, Knussen, & Flowers, 2007;Ware, 1993). Other studies show the importance participants put on other people understanding CFS/ME as a physical problem.…”

The Influence of the Xenotropic Murine Leukaemia Virus-Related Virus (XMRV) Research Findings on the Thoughts and Feelings of People Living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: An Interpretative Phenomenological Analysis

“…The employment of IPA to examine the effect of the XMRV research on individuals with CFS/ME, to the authors' knowledge a question not previously researched, largely yielded rich material on the topic of XMRV and particularly on the subjective experience of living with CFS/ME in general, as was the case with its use in previous studies of CFS/ME (Arroll & Senior 2008;Dickson et al 2007). However, at the analysis stage, the identification of master themes Downloaded by [The Aga Khan University] at 06:14 21 November 2014 which focussed solely on the influence of the findings on the participants' thoughts and feelings, rather than other areas of their illness experience, proved somewhat problematic.…”

“…Interpretative Phenomenological Analysis (IPA; Smith 1996) was chosen as it has been shown to be a highly effective method of examining the experience of people living with CFS/ME, particularly how those with CFS/ME conceptualise their condition (Arroll & Senior 2008) as well as their experience of stigma and delegitimation (Dickson et al 2007). The present study thus adopts this methodology by using IPA to address a question which the extant literature has yet to explore: the influence of the XMRV research findings on the thoughts and feelings of people living with CFS/ME.…”