Under-diagnosis in school children

We do not really know how many youngsters are affected by ME/CFS, but with rough prevalence figures of 60 to 70 cases per 100,000, it is likely that around 9,000 people under the age of 16 in the UK meet the criteria for the illness which – according to the report to the Chief Medical Officer  in 2002 – “represents a substantial problem in the young” and “can disrupt education and social and family life, at a particularly vulnerable time of life”. We know, however, that many of them remain undiagnosed and under-investigated, which was why researchers at the Centre for Child and Adolescent Health in Bristol wanted to examine whether school-based clinics could be used to identify these children.

The investigators examined records of children aged 11 to 16 years enrolled in three state secondary schools in the south west of England, to determine the number of children newly diagnosed with ME/CFS. Attendance officers identified those children who had missed 20% or more of school in a six-week term without a known cause. Children with fatigue were referred to a specialist “CFS/ME” service for further assessment, and outcomes were evaluated after six weeks and six months. All children given a diagnosis of ME/CFS were screened for other medical and emotional causes of fatigue.

Of the 2,855 enrolled children, 461 (16%) had missed 20% or more school over a sixweek period, and 28 children, representing around 1% of the school population, fulfilled the criteria for ME/CFS. Importantly, only 3 of these 28 children (10.7%) had previously received a diagnosis and accessed specialist treatment. Of 19 children followed up, 6 had fully recovered at six weeks and a further 6 at six months. As might be expected, children who were detected through school-based clinics were less severely affected than those referred via health services, and appeared to do well once treated.

The key lessons of this study are the high degree of under-diagnosis of ME/CFS among school children, and the important, though underappreciated role the illness has in “unexplained” absence from school. School-based clinics should be aware of the problem and of the option to refer these ill children to specialist services.

Reference: Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics. Crawley et al. BMJ Open 2011 Dec 12; 1(2): e000252.

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