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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
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 (*).
In developing the guideline, the guideline development group aimed to draft recommendations to promote access to appropriate care and support and to encourage a collaborative relationship between patients, carers, and professionals.
Formal consensus methods were used to develop this guideline. The guideline development group used ratings of appropriateness to agree on evidence statements and associated recommendations.6 This was supplemented by use of the same methods with a sample of people (219/399; response rate of 55%) outside the guideline development group, including health professionals (doctors, nurses, therapists) involved in the care of people with CFS/ME, patients with CFS/ME, and carers. The ratings of the wider group were used to inform the guideline group of the range of opinions among health professionals, patients, and carers and to highlight draft statements that were ambiguous or unclear.
NICE has produced four different versions of the guideline: a full version; a quick reference guide; a version known as the “NICE guideline” that summarises the recommendations; and a version for patients and the public. All these versions are available from the NICE website (www.nice.org.uk/CG053). Future updates of the guidelines will be produced as part of the NICE guideline development programme.7
The National Collaborating Centre for Primary Care thanks Professor Rosalind Raine and her team for advice on the use of the consensus method, and the Centre for Reviews and Dissemination at York for their review of the evidence.
Both authors were members of the Guideline Development Group for the NICE guideline (RB chaired the development group and EJS was a reviewer).
Contributors: All authors contributed to guideline development and writing and correcting the article.
Funding: The National Collaborating Centre for Primary Care was commissioned and funded by the National Institute for Health and Clinical Excellence to write this summary.
Competing interests: None declared.
Provenance and peer review: Commissioned; not externally peer reviewed.