Although estimates of the occurrence of chronic fatigue syndrome/myalgic encephalopathy (CFS/ME) vary and depend on the definition, studies of school absence suggest the UK prevalence is between 50–100 per 100 000 children, with the highest rates in adolescents. It is a condition that has the potential to generate conflict between patients and doctors, even to the extent of the most appropriate name for the condition. It has previously been the subject of a report to the Chief Medical Officer¹ and joint Royal College reports^2,3 on management.

In 2003 the Royal College of Paediatrics and Child Health initiated an evidence based guideline based on a rigorous literature review, and using the Delphi consensus process where evidence was lacking. It was developed in partnership with the Association of Young People with ME (AYME). This guideline was published in December 2004,⁴ and aims to increase knowledge and understanding among paediatricians about CFS/ME in children and young people (up to the age of 18 years) and to optimise the management of CFS/ME in young patients.

Although the graded recommendations are reproduced here, the full text of the guideline contains a wealth of additional information, and paediatricians are strongly urged to refer to the full guideline.

KEY PRACTICE RECOMMENDATIONS

Making a diagnosis

Taking a clinical history

• When taking a clinical history in children presenting with symptoms of CFS/ME, sufficient time should be allowed to listen to and document carefully the patient’s description of symptoms and any associated disability [grade GPP]

• When taking a clinical history the paediatrician should explore all symptoms described by the patient including asking about the severity, onset, and course, and about other symptoms which might suggest alternative diagnoses [grade D]

• An initial family history should include an enquiry into chronic illness, and in particular CFS/ME or similar conditions in any family member [grade D]

• When initially assessing …