Pre-illness to post-recovery: A Journey. The lived experience of Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS)




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De Montfort University


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Peer reviewed


This thesis contributes an original perspective to the current Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) literature. The programme of research reported here aimed to provide an account of thewhole of the sufferer’s journey from prior to the illness through the illness itself and beyond to the recovery period. This is in contrast to much previous literature which focuses just on the period of ‘illness’. The present study aims to document the ways in which ME/CFS is formulated as a controversial chronic illness and extend this to consider the ‘culture of contention’ surrounding claims of ‘recovery’. This research adopts a combined theoretical approach of grounded theory and social constructionism. The data set comprises 8 hours of interview data based upon 36 initial interviews and 6 follow-up interviews conducted a year later. Data was analysed using constructivist grounded theory. By adopting this approach it was possible to ensure that findings were firmly grounded in the data whilst also being able to highlight unique features of speech such as the participants’ use of financial language to explain how the illness impacts upon their energy levels.The first analytical chapter,Liminality proposes that the participants’ experiences of being ill with ME/CFS or being in partial or full recovery can be interpreted as liminal because they are continually stranded in between the socially constructed categories of being ‘ill’ and being ‘well’. The Biographical Disruption chapter introduces the notion that there is a continual ‘balancing act’ for the participants to manage as things like trying to improve their health, can cause new, additional disruptions. Identity and the Self explores the participants’ accounts of being mentally and physically disempowered by ME/CFS as they become unable to participate in even mundane activities. Their descriptions are likened to being held ‘under siege’. Finally, A Longitudinal Viewrevisits the participants after an interval of a year and provides an insightful exploration the ongoing difficulties that the stigma associated with being ill with ME/CFS continues to cause. Including being unable to talk about either being ‘ill’ or ‘well’ and managing concerns that the illness may return. The findings of this research add a new dimension to the chronic illness literature and illustrate some previously undiscovered problems and dilemmas that people with ME/CFS may encounter. It is envisaged that these enhanced understandings will be beneficial to the medical profession and carers as well as people with ME/CFS themselves, their families and support networks.





Research Institute