Research article
The expressed needs of people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A systematic review
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* Corresponding author: Fiona Poland f.poland@uea.ac.uk
1 School of Allied Health Professions, University of East Anglia, Norwich, NR4 7TJ, UK
2 School of Medicine, Health Policy and Practice, University of East Anglia, Norwich, NR4 7TJ, UK
3 Plaishetts House, Hadspen, Castle Carey, BA7 7LR, UK
4 London School of Hygiene and Tropical Medicine, Keppel Street, London, WC1E 7HT, UK
5 Hull and East Yorkshire Medical Research and Teaching Centre, Castle Hill Hospital, Castle Road, Cottingham, HU16 5JQ, UK
BMC Public Health 2009, 9:458 doi:10.1186/1471-2458-9-458
Published: 11 December 2009Abstract
Background
We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME)
Methods
We carried out a systematic review of primary research and personal ('own') stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.
Results
Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.
Conclusions
Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends - most importantly - on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.