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

Abstract

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a condition of unknown aetiology characterised by severe physical and mental fatigue, musculoskeletal pain, and cognitive disturbances. Due to the lack of a clear biological marker, those with CFS/ME frequently encounter stigma and delegitimation of illness, causing them psychological distress. Individuals with CFS/ME tend to reject the psychogenic model associated with CFS/ME in favour of a viral or immunological explanation: a perception which appears to aid their understanding of their illness. A recent, widely publicised study by Lombardi et al. (2009) claimed to have identified a link between xenotropic murine leukaemia virus-related virus (XMRV) and CFS/ME. In this context, an investigation of the influence of these research findings on the thoughts and feelings of people living with CFS/ME was conducted. Nine semi-structured telephone interviews were conducted with support group members in the United Kingdom. Interpretative Phenomenological Analysis (IPA; Smith 1996) was used to uncover three superordinate themes: XMRV and the legitimation of CFS/ME, a cautious response to the research findings, and criticism of the reaction to the XMRV research of fellow individuals with CFS/ME. The findings are discussed in relation to the existing literature surrounding illness representations, with a critique of the present study.

Keywords:

• chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
• delegitimation
• illness perception
• Interpretative Phenomenological Analysis (IPA)
• xenotropic murine leukaemia virus-related virus (XMRV)