Perspectives of Time and Occupation: Experiences of People with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Abstract

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling condition that disrupts the normal rhythms and activity patterns of daily life. Although temporal dimensions such as time use, tempo and temporality have an important relationship to occupation there has been limited study of these factors within CFS/ME. This qualitative study explored how people with CFS/ME perceived the relationship between time and occupation through the experience of their illness. A social constructivist approach to grounded theory involving in-depth interviews with 14 participants, recruited through a specialist service in the UK, revealed emerging concepts of accelerating time before illness, with a focus on imminent tasks. During illness actions slowed, but contrasted with the experience for some participants of time disappearing. As participants adjusted to the condition there was a greater focus on being present and consciously slow, as a sense of control within time emerged. These findings suggest that further consideration is given to the broader aspects of time and rhythm within occupational science, evolving from the current clock time perspective to incorporate event time and resynchronisation of occupational balance.

Keywords:

• Chronic fatigue syndrome
• Myalgic encephalomyelitis
• Time
• Rhythm
• Occupational balance