New guidelines on diagnosis and managment of ME/CFS in adults and children.

The UK National Institute for Health and Clinical Excellence (NICE) has published its first clinical guideline on the effective diagnosis and management of CFS/ME in adults and children.

This new guideline highlights the importance of shared
decision-making between health professionals and people with CFS/ME, and of providing therapies suitable to the individual. It also stresses the individual's right to refuse or withdraw from any part of their treatment plan without it affecting future care.

Unfortunately, the guideline also perpetuates the belief that cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are effective management strategies for CFS/ME, even though patients have consistently reported that this is often not the case.

Recommendations include:
• Children and young people under 18 who show
symptoms of possible CFS/ME should be referred to a paediatrician within six weeks of first seeing their doctor.
• A CFS/ME diagnosis should be made after symptoms have persisted for four months in adults and three months in the under 18s, after other possible causes have been
• An individualised management plan should be developed with the patient, the aims and goals of which should
remain in the patient's control.
• Health professionals should provide care in ways that are suitable to the individual, which may include providing tests or treatments at home, or support and advice by telephone or email.
• Clinicians should offer advice on managing activity, rest
periods, sleep patterns, diet, equipment to help maintain independence - eg the blue badge - and advice on fitness for work or education.
• People with CFS/ME should not be advised simply to 'go to the gym' or 'exercise more' as this may worsen their symptoms.
• Cognitive behavioural therapy and/or graded exercise
therapy should be offered to people with mild or
moderate CFS/ME and provided for those who choose it.

The publication of this guideline is an important step forward for those with CFS/ME and should help in further establishing that this is a legitimate and debilitating illness. It should also assist clinicians in diagnosing the illness accurately and promptly, so that effective management can be started as
early as possible.

The full NICE guideline (488 pages), a shorter Quick Reference Guide and a booklet for NHS patients called Understanding NICE Guidance can all be downloaded from:
Paper copies of the Quick Reference Guide and patient's guide can be obtained by phoning the NHS response line on 0870 1555 455 and quoting N1302 or N1303, respectively.

Further advice about CFS/ME is available from:
Action for ME - 0845 123 2314 -
ME Association - 08704 441836 -
The 25% Group - for the severely affected - 01292 318611


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First Published in December 2007

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