Illness in youngsters has a particular poignancy, and it is sometimes forgotten that around 9,000 people under the age of 16 in the UK have ME/CFS at any one time (on current estimates), and there are likely to be similar numbers in other European countries.

One research group, at Wilhelmina Children’s Hospital in Utrecht has determined the GP-diagnosed prevalence and pediatrician diagnosed incidence rates of adolescent ME/CFS in the Netherlands. They collected data (for January to December 2008) from a cross-sectional sample of GPs, and from paediatric hospital departments, with the focus on young people aged 10 to 18 years. Patients received, through their pediatricians, a short survey about their experiences.

The prevalence of ME/CFS (number of cases in the population) was estimated to be 111 per 100,000 adolescents, with an incidence (number of new cases each year) of 12 per 100,000 – figures somewhat lower than those found in other countries by researchers using different methodologies. But the most interesting devils in this report were in the details. For instance, the average wait for a diagnosis was 17 months, and illness duration ranged widely from 6 to 110 months. In 22% of patients, the illness started after an acute episode of infectious disease, mostly Epstein Barr virus infection, and 10% of patients had an acute but non-infectious onset. Looking at the consequences of illness, most patients (91%) had severe fatigue and considerably reduced physical functioning compared with their healthy peers. School absence was high, with 90% of young people reporting “considerable”, severe or complete school absence in the previous 2 and 26 weeks.

The comments of the authors about extreme disability and high rates of school absence reinforce the points made by the report to the Chief Medical Officer of England in 2002 that this illness “represents a substantial problem in the young” and “can disrupt education and social and family life, at a particularly vulnerable time of life”.

Reference: Adolescent chronic fatigue syndrome: prevalence, incidence, and morbidity. Nijhof SL et al. Pediatrics 2011 May; 127(5): e1169-75.