Particular experiences: a psychosocial exploration of myalgic encephalomyelitis (ME) and its relationship with self, environment and the material world

Myalgic encephalomyelitis (ME), also referred to as chronic fatigue syndrome (CFS), is a symptomatically defined and debilitating condition that presents as a range of physiological and psychological effects. Post-exertional fatigue and ongoing low energy levels are cardinal features. Whilst ME-like conditions have been recognised for at least two hundred years, they have been characterised over recent decades by a fiercely contested debate as to whether aetiology is primarily psychological or physiological. ME sufferers experience profound changes to their self-perception, ability to maintain daily routines and activities and how they are perceived in terms of their capacity to carry out social roles, including illness-status. The contested aetiology results in-part from a climate of dualistic thought and the biomedical model upon which ME is treated and theorised. Whilst the effects of ME on self experience have been investigated from various qualitative and quantitative perspectives, the primary purpose of this thesis is to develop a psychosocial framework from which to explore previously neglected dimensions of the effect of ME on self experience. Developing a psychosocial understanding of ME is in keeping with a turn towards post-Cartesian and non-dualistic thinking. The second interconnected purpose of this thesis is to address the role played by the material environment and objects and to conceptualise their importance and relation to self and how it is affected by ME. This is currently absent in the literature on ME. Developing a psychosocial framework suitable for this purpose rested on a synthesis of Actor Network Theory (ANT) and a psychoanalytically influenced use of metaphor and metonymy. At the heart of this synthesis are the notions of relational ontology (Latour, 1997; DeLanda, 2002) and assemblage (Deleuze and Guattari, 1987; DeLanda, 2002; Hodder, 2012). A relational ontology focuses on the relations between disparate objects such as material artefacts, humans, other organisms and concepts and avoids prioritising any one ‘thing’ as more important than another. The notion of assemblage has emerged alongside ideas concerning complexity, chaos and indeterminacy and informs a vocabulary addressing the problem of causality, determination and the stability of social and psychological phenomena (Venn, 2006). As part of a psychoanalytically informed psychosocial framework these concepts enable an exploration of ME by bringing together disparate aspects such as everyday objects, experiences, symptoms and environments in a non-causal, non-dualistic and processual manner. The psychoanalytic element also enables an exploration of the unconscious and irrational aspects of experience, which is most pertinent with regards to the effects of ME. Thus, the premise of this research was to establish a psychosocial methodology and theoretical basis from which to explore the effects of ME on self experience. Moreover, this methodology was designed to engage with the complex, coincident and entangled nature of the symptoms, discourses, objects, material artefacts, environments and non-human organisms that ME appears to be comprised of. Methods were developed which enabled the researcher to be with and explore the day-to-day life and routines of eight ME sufferers in their everyday environments over a six month period. This involved working with the ME sufferers taking part primarily in their own homes and spaces around their home which they frequented, such as shopping malls and even a cemetery; in itself novel in terms of qualitative research into ME. Of these eight sufferers, three were male [age range 49 – 65; earliest formal diagnosis of ME occurring in 2005] and five females [age range 25 – 63; earliest diagnosis 2002]. Two sufferers were in paid employment, one was retired and five were unable to work due to their ME. Due to the extensive nature of the data, only 3 case studies, two male and three female, were selected for in-depth analysis. Cases selected were those that most clearly illustrated central analytic themes. Data comprised talk, audio-visual material and the affective responses of the researcher. Analytic methods were devised which initially adopted a thematic approach before metaphoric and metonymic equivalences were drawn between what ME sufferers discussed and aspects of the routines, objects and environments they were engaged with. This informed descriptions of how these things became networked, in an ANT sense, and how self experience was implicated. A key finding which emerged is the notion of debilitating spaces. This term captures the manner in which, for certain sufferers, the experience and hence the maintenance of ME was intrinsically enmeshed with their immediate physical environment. Further findings discussed include the way in which seemingly everyday objects such as food blenders can be co-opted by sufferers as a means of enhancing their self-experience in light of ME. Overall, the findings of this PhD are discussed in terms of the success and applicability of that premise and its contribution to the field of psychosocial approaches. The key assertion is that the methodology enhances an understanding of ME and its effects, highlighting the variable yet particular nature of ME and its effect on self experience and in incorporating the hitherto unconsidered range of objects outlined above.