‘Falling between the lines’ : progression to recovery within a contested illness for people with ME/CFS : a thesis presented in partial fulfilment of the requirements for the degree of Master of Science (by thesis) in Psychology at Massey University, New Zealand

Abstract

Despite the vast amount of research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), little is known about the lived experience of recovery. ME/CFS remains a poorly understood illness, with unclear aetiology, poor treatment advice and no universally agreed consensus on how recovery should be defined or measured. Because of this, navigating and accessing suitable supports and services for ME/CFS can be a challenging endeavour. This study aimed to explore the lived experience of eight women through personal accounts of recovery, looking at progression over time and what helped or hindered them in their recovery journey. An interpretative phenomenological analysis (IPA) and idiographic tradition enabled an in-depth exploration of each person's situated, lived bodily experience, taking into account the world in which they live. Four recovery phases were identified: Chaos, Confusion and Scepticism, Turning Point, Restoration and Integration and Acceptance and Finding Balance. These phases were intertwined, highlighting what helped recovery progression and the back and-forth nature of recovery. Recovery for the participants was framed as 'recovery in' rather than 'recovery from', emphasising the possibility of significant improvement while acknowledging the continued need to manage some ongoing symptoms. Recovery is hard work, requiring ongoing bodily surveillance and an in-depth personal knowledge of the illness. In addition, having a recovery-oriented framework based on a holistic approach to health and a belief in symptom improvement that validated illness experience was necessary. Understanding these phases and operating from a recovery-oriented framework can improve health care and treatment options for people with ME/CFS. The approach to recovery, like the illness itself, must be multi-faceted and tailored to the individual, which requires an interdisciplinary approach to the treatment of ME/CFS, allowing for greater possibilities for recovery progression.