Long-term experiences of managing CFS/ME: A qualitative study
Research type
Research Study
Full title
Long-term experiences of managing CFS/ME: A qualitative study
IRAS ID
143726
Contact name
Deborah Baldwin
Contact email
Sponsor organisation
The University of the West of England
Research summary
Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME) is a Long-term condition (LTC) characterised by disabling fatigue, occurring without presence of disease, lasting over 4 months (NICE, 2007). Accompanied by other symptoms including: post exertion malaise, poor, disturbed and un-refreshing sleep, myalgia, poor concentration, memory difficulties, headaches, swollen glands and persistent sore throats (Fukuda et al, 1994). No firm conclusions have been drawn regarding the illness trajectory, prognosis and recovery of CFS/ME (Action for ME, 2014: Asbring, 2001: Jason et al, 2012). In part, this is because of the limited knowledge available about the condition’s aetiology and the variable meanings of the term ‘recovery’.
The National Institute for Health and Clinical Excellence (NICE) guidelines (2007) concluded effective treatment and management included behavioural interventions (Specifically Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET)) combined with GP symptomatic treatment (Chambers et al, 2006). This was supported by an updated systematic review of behavioural interventions for adults with CFS/ME. Significant improvements were observed in fatigue, function, depression and anxiety, at both post intervention and long-term follow up (> 12 months), with Cognitive Therapies (CT) provided most of the significant effects (Baldwin, 2013). The review also concluded there was limited knowledge on longer-term effects (> 12 months).
To date, few studies have specifically explored long-term experiences of CFS/ME, which is particularly relevant given the considerable months and years people experience debilitating symptoms. This project aims to extend the knowledge of long-term experiences of CFS/ME specifically focusing on management of the condition, using qualitative research methodology (semi-structured interviews, analysed using Thematic Analysis). The research aims to explore therapeutic moderators and mechanisms of change (Castell, Kazantis and Moss-Morris, 2011), understand more about how people with CFS/ME manage their condition and whether these methods vary dependant on illness duration.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
14/YH/1135
Date of REC Opinion
11 Aug 2014
REC opinion
Favourable Opinion