New research suggests chronic fatigue syndrome (CFS/ME) affects far more schoolchildren than was thought and may be a key reason for time off school.
Previous estimates suggested around one to five in 1,000 children are affected by CFS. Now, new University of Bristol research puts the figure among 11 to 16-year-olds at one in 100.
Researchers looked at 2,855 children from three secondary schools in south west England. 461 had missed 20% of school days over six weeks.
The study published in BMJ Open then excluded children missing school for a defined episode of ill health, those with known medical conditions and truants. Three children were already known to have CFS. 112 of the 146 children with unexplained absence attended a clinical review at school. Two had already been diagnosed as having CFS/ME, which the schools were not aware of, 42 others were referred to a specialist clinic, where 23 were then diagnosed as having CFS/ME, making a total of 28 – or 1% of the children in the study.
Children identified by school-based clinics seemed to make rapid progress, the researchers say. Six of the 19 children whose health was monitored had fully recovered after six weeks, and a further six had fully recovered after six months.
Identifying CFS
The report’s author is Dr Esther Crawley, consultant paediatrician at the Centre for Child and Adolescent Health, School of Social and Community Medicine at the University of Bristol. She has experience of CFS being behind children’s absence from school through work with attendance officers: “No one had actually ever asked them what the problem was,” she tells us.
“These teenagers would say: ”I just feel awful. I have terrible headaches. I feel really sick. I’m really tired all the time. I can’t get up in the morning.” It turned out they had chronic fatigue syndrome and it was very treatable.”
How do you differentiate CFS from just normal teenage behaviour? “50% of teenagers are tired. The thing about chronic fatigue syndrome is it stops you doing things,” Dr Crawley says.
“If a child is not going to school, but is still socialising, going out with their mates, they don’t really have a problem. They just don’t like school.”
She says the situation is very different in children with CFS: “All of these children were actually not doing anything. They’d stopped all their socialising. They’d stopped all their sport, and they were missing a lot of school as well.”
Dr Crawley says there may be a social and sex divide in CFS diagnosis, with wealthier parents of more academic girls more likely to get CFS diagnosed.
Are schools doing enough to spot CFS? “These children should have been identified by the schools and should have been referred to our service earlier.”
Dr Crawley says there can be a pattern in missing school among children with CFS. “They’re attending school Monday to Wednesday and too unwell to attend Thursday and Friday,” she says. “Usually children do want to go to school and they push themselves and then feel very unwell at the end of the week.
“What we normally do is to get them to do half-day school every day and then build-up.”
Many of the children in the study were just given advice about healthy sleep. “That was what was astonishing,” says Dr Crawley. “Many of them got better with very minimal advice, much less than we would normally give in the clinic.
“The advice about sleep is not to oversleep because that reduces the quality. And to have a very consistent – and good – waking-up time. Simple advice seemed to have a good effect.”
Is the rise in CFS a modern-day phenomenon? “We know this illness has been around forever. It’s just been under diagnosed.
“But one does suspect that allowing teenagers to sleep-in to whatever time they want at the weekend could make them more vulnerable to getting it, but we don’t know. There’s no evidence for that.”
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