In what is believed to be the biggest study of chronic fatigue syndrome (CFS) — also known as myalgic encephalomyelitis (ME) — in children to date, researchers at the University of Bristol (UK), have found that almost 2 per cent of 16-year-olds have CFS lasting more than six months and nearly 3 per cent have CFS lasting more than three months (the UK definition). Those with CFS missed, on average, more than half a day of school every week.
The researchers looked at the condition in 5, 756 participants in Children of the 90s and found that girls were almost twice as likely as boys to have the condition. This is because CFS/ME became more common in girls between 13 and 16 but not in boys. Children from families experiencing greater adversity were more likely to have the condition, dispelling the commonly held view that CFS is a ‘middle-class’ illness or ‘yuppie-flu’. The definition of adversity included poor housing, financial difficulties and a lack of practical and/or emotional support for the mother.
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The researchers point out that the diagnosis of CFS was not made by a doctor but is based on responses to questionnaires sent to both the teenagers and their parents.
Dr Esther Crawley, senior report author and consultant paediatrician specialising in CFS/ME, said treatment for teenagers with the condition was effective but few had access to treatment in the UK.
“Children attending my specialist service only attend two days a week of school on average. This means that only the most severe cases are getting help.
“As paediatricians, we need to get better at identifying CFS/ME, particularly in those children from disadvantaged backgrounds who may be less able to access specialist care.”
She said experts still did not know exactly why or how the condition is triggered, but research showed it could be successfully treated with cognitive behavioural therapy (CBT) in young people.
Sonya Chowdhury, chief executive of Action for ME, said the study pointed to the need for more effective treatments.
“We know from contact with the parents of children with ME that this disabling condition impacts on every area of family life.
“The reality is that many young people miss considerably more than half a day of school a week, while for the most severely affected, their disabling symptoms are compounded by the isolation and loss that comes with being housebound and/or bedbound.”
