Authors

Gotts ZM, Newton JL, Ellis JG, Deary V

Institution

Faculty of Health and Life Sciences, Northumbria University, Newcastle-Upon-Tyne, UK

Publication

British Journal of Health Psychology 2015 Feb 26; Epub ahead of print

Funding

This work was supported by Action for ME, ME Research UK, and the ME Association Ramsay Research Fund

Abstract

Objectives

Sleep disturbances are common in chronic fatigue syndrome (CFS), and one of the key symptom complaints, yet it has been neglected by previous qualitative research. The aim was to explore the specific role of sleep in patients’ experience of their illness.

Design

A qualitative semi-structured interview format facilitated a detailed and open exploration of sleep, and the extent to which its management and problems were linked to the lived experience of CFS.

Methods

Eleven semi-structured interviews were conducted with individuals with CFS. Data were transcribed verbatim and analysed thematically, to explore and describe patients’ experience of their sleep, and its impact on their condition.

Results

Sleep emerged as a key aspect of the illness experience, and its management and effect on daytime functioning was a central pre-occupation for all 11 participants; all of them saw sleep as playing a critical role in their illness through either maintaining or exacerbating existing symptoms. Exploration of individual experiences presented three overarching themes: (1) sleep pattern variability over illness course and from day to day; (2) effect of sleep on daytime functioning; and (3) attempts at coping and sleep management.

Conclusions

Each patient with CFS has a unique experience of sleep. Despite the differing narratives regarding the role of sleep in CFS, all participants held the belief that sleep is a vital process for health and well-being which has had a direct bearing on the course and progression of their CFS. Also, every participant regarded their sleep as in some way ‘broken’ and in need of management/repair. Patients’ insights demonstrate sleep-specific influences on their CFS, and the impact of disturbed sleep should be a consideration for clinical and research work.

What is already known on this subject?

Sleep disturbances are common in CFS, and one of the key symptom complaints, yet it has been neglected by previous qualitative research. Ontology of CFS is a matter of dispute, with models ranging from the biological to the psychological competing to explain symptomatology in this illness. A qualitative study has the potential to add some clarity to the debate by making the patients’ lived experience of the condition, and their own understanding of it, the focus of research. Coping and attempts at managing sleep problems in CFS adds to the ‘illness burden’ experienced by patients. Disturbed sleep is universally seen by patients with CFS as impacting on other daytime symptoms.