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Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance

BMJ 2007; 335 doi: https://doi.org/10.1136/bmj.39302.509005.AE (Published 30 August 2007) Cite this as: BMJ 2007;335:446
  1. R Baker, chair of the guideline group1,
  2. E J Shaw, deputy chief executive2
  1. 1Department of Health Sciences, University of Leicester, Leicester LE1 6TP
  2. 2National Collaborating Centre for Primary Care, Royal College of General Practitioners, London E1 8EW
  1. Correspondence to: E J Shaw cfs_me@rcgp.org.uk

    Why read this summary?

    Data from other countries indicate that chronic fatigue syndrome (also known as myalgic encephalomyelitis or myalgic encephalopathy) (CFS/ME) is relatively common (affecting at least 0.2-0.4% of the population), although good epidemiological data for the United Kingdom are lacking. Many different potential aetiologies for CFS/ME have been investigated, including neurological, endocrine, immunological, genetic, psychiatric, and infectious, but the aetiology cannot yet be fully explained. CFS/ME can cause prolonged illness and disability and substantially affect patients and their families. Although most patients have mild or moderate symptoms, some have severe CFS/ME and are housebound or even unable to move from their bed. Uncertainties about diagnosis and management may exacerbate the impact of symptoms, and patients often encounter delays in diagnosis and difficulty accessing information, support, and potentially helpful therapies.1 This article summarises the most recent guidance from the National Institute for Health and Clinical Excellence (NICE) on diagnosing and managing this condition.2

    Recommendations

    NICE recommendations are based on systematic reviews of best available evidence. When minimal evidence is available (as with CFS/ME), a range of consensus techniques is used to develop recommendations. In this summary, recommendations derived primarily from consensus techniques are indicated with an asterisk (*).

    General principles

    • • Acknowledge the reality and impact of the condition and symptoms.*

    • • Provide information on possible causes of the condition, its course, and management strategies (including benefits and risks of therapies, return to work or education), tailored to individual circumstances.*

    • • Offer information about self help and support groups for patients, families, and carers.*

    • • Be aware that all patients have the right to refuse or withdraw from any component of their care plan without this affecting other aspects of care or future choices about care.*

    • • Aim to establish a supportive, collaborative relationship with patients and their carers and families (especially those of …

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