Perspectives of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Q-methodology study

Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is characterised by fatigue, alongside many other symptoms. There is no clear aetiology. This has created uncertainty for stakeholders and led to polarisation in attitudes towards the condition, its causes, and interventions. People with ME/CFS and their families report experiencing disbelief. Healthcare professionals report often finding this a difficult condition to work with, particularly when their own viewpoints differ from the people they are working with.

Literature Review

Social support plays a significant role for people with chronic conditions. The impact on family members supporting people with ME/CFS is not well understood. A systematic review exploring the experiences of people with a family member with a diagnosis of ME/CFS was undertaken. Four databases were searched, and eight studies identified. A thematic synthesis was conducted which identified three themes: ‘Changes in relationships’ looked at how people relate to their relative in new ways. ‘Coping with an uncertain and misunderstood condition’ describes the challenges of negotiating stigma and uncertainty. ‘Loss’ is concerned with participants’ sense of losing the person who had become ill and of their own identities.

Research Report

Perspectives on ME/CFS were explored using Q-Methodology. Participants sorted statements about ME/CFS according to their relative level of agreement. A factor analysis was conducted and three factors extracted: Factor 1, ‘A debilitating physical health condition,’ placed emphasis on the physiological aspects of the condition, the severity of symptoms and the lack of understanding from others. Factor 2, ‘The mind affecting the body,’ placed more importance on the role of vulnerability to stress and emotional issues. Factor 3, ‘Management is key to recovery,’ stressed lifestyle management approaches. It is hoped that these findings can support all stakeholders in reflecting on the positions they and others hold and the similarities and differences, to support constructive dialogue.