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Review
. 2009 Dec 11:9:458.
doi: 10.1186/1471-2458-9-458.

The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review

Maria de Lourdes Drachler  1 , Jose Carlos de Carvalho Leite, Lee Hooper, Chia Swee Hong, Derek Pheby, Luis Nacul, Eliana Lacerda, Peter Campion, Anne Killett, Maggie McArthur, Fiona Poland
Affiliations
Review

The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review

Maria de Lourdes Drachler et al. BMC Public Health. .

Abstract

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.

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Figures

Figure 1
Figure 1
Flow diagram of structured searches and inclusion assessment of studies.
Figure 2
Figure 2
Conceptual framework derived from the core categories of expressed needs of people with CFS/ME for support in managing the illness and social inclusion developed from the data within this systematic review.
See this image and copyright information in PMC

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