Guided graded Exercise Self-help for chronic fatigue syndrome: patient experiences and perceptions

Abstract

Purpose: This study explored patient experiences of Guided graded Exercise Self-help (GES) delivered as part of a randomised controlled trial for people with chronic fatigue syndrome/myalgic encephalomyelitis. The trial found that GES was better than specialist medical care at reducing fatigue and improving physical functioning.

Methods: Semi-structured interviews were conducted with patients reporting improvement (n = 9) and deterioration (n = 10), and analysis involved thematic “constant comparison.”

Results: The improved group described more facilitators to doing GES, and were more likely to describe high levels of self-motivation, whereas the deteriorated group described more barriers to GES (including worse exacerbation of symptoms after GES, greater interference from comorbid conditions, and obstacles to GES in their lives), and had been ill for longer. Having the capacity to do GES was important; of note, those with relatively lower levels of functioning sometimes had more time and space in their lives to support their GES engagement. We identified an important “indeterminate phase” early on, in which participants did not initially improve.

Conclusions: GES may be improved by targeting those most likely to improve, and teaching about the indeterminate phase.

Implications for rehabilitation

• Using the Guided Exercise Self-help booklet alone is unlikely to be sufficient to support patients through Guided Exercise Self-help successfully.

• Additional guidance from skilled physiotherapists/health professionals who demonstrate an understanding of what it is like to cope with chronic fatigue syndrome/myalgic encephalomyelitis is also important.

• Those using Guided Exercise Self-help may need additional support through a commonly experienced “indeterminate phase” – an initial phase in the programme where few benefits, along with various challenges associated with increasing activity, are experienced.

• Individuals who have been ill with chronic fatigue syndrome/myalgic encephalomyelitis for a relatively longer period of time and/or have additional comorbid conditions may benefit from more bespoke therapies with greater health professionals input, delivered by appropriate therapists.

Keywords:

• Chronic fatigue syndrome
• myalgic encephalomyelitis
• graded exercise therapy
• randomised controlled trial
• qualitative

Acknowledgements

We would like to thank the patient representative from the GETSET management group who initially recommended doing this study; those who kindly provided feedback on the manuscript, and all the participants who gave up their time to take part in the study.

Disclosure statement

Author PW reports funding from the NIHR Research for Patient Benefit programme during the conduct of this study; is a member of the Independent Medical Experts Group (a non-departmental public body, which advises the UK Ministry of Defence regarding the Armed Forces Compensation Scheme); has provided unpaid advice to the UK Department for Work and Pensions regarding mental health issues; and does paid consultancy for a re-insurance company. The other authors declare that they have no conflict of interest.

Additional information

Funding

This paper presents independent research funded by the National Institute for Health Research under its Research for Patient Benefit Programme (Grant Reference Number PB-PG-0610–22060). The views expressed are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.