CFS/ME in the NHS: outcomes after treatment by NHS specialist services
Research type
Research Study
Full title
CFS/ME in the NHS: outcomes after treatment by NHS specialist services for adults with Chronic Fatigue Syndrome (CFS/ME)
IRAS ID
149792
Contact name
Simon Collin
Contact email
Sponsor organisation
North Bristol NHS Trust
Research summary
Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), is defined as persistent or recurrent debilitating fatigue that is not life-long, the result of ongoing exertion, alleviated by rest, or explained by other conditions, and which results in a substantial reduction in activity. CFS/ME imposes a huge burden on patients and on their carers and families, Adults who attend NHS specialist CFS/ME services have been ill for a median duration of 3 years, and half of those who were employed at the onset of their illness have ceased working. Adult population prevalence estimates for CFS/ME range from 0.2% to 2.6%, depending on case definition and study methodology.
Approximately 9,000 adults are assessed annually by NHS specialist CFS/ME services in England, of whom approximately 78% (range 60-100%) are diagnosed with CFS/ME. These specialist services use a range of treatments, with little or no standardisation across the NHS. The extent to which patients recover from their illness and are able to return to normal levels of activity are unknown. Some of the economic costs of CFS/ME have been quantified, but the cost-effectiveness of specialist services has not been investigated.
This research study will use data collected from patients diagnosed with CFS/ME who receive treatment from 10 NHS specialist services and 2 qualified providers. The aim of the study is to describe variation in treatment programmes, to investigate whether NHS treatments for CFS/ME lead to long-term improvements in health and wellbeing, and to investigate the relative cost-effectiveness of packages of care provided by NHS specialist CFS/ME services. This study is based on the CFS/ME National Outcomes Database (NOD), into which routinely-collected data from NHS specialist CFS/ME services have been entered since 2006 for the purpose of service evaluation.
REC name
North West - Preston Research Ethics Committee
REC reference
14/NW/0242
Date of REC Opinion
14 Apr 2014
REC opinion
Favourable Opinion