From the BMJ news section | 1 November 2016 | Story by Nigel Hawkes
A UK trial launched on 1 November will seek to establish whether cognitive behavioural therapy (CBT) delivered online is effective in treating chronic fatigue syndrome (CFS) in children.
Esther Crawley, professor of child health at the University of Bristol, hopes to recruit 734 children and adolescents over the next three years to be randomly assigned either to a programme of online CBT already shown to be effective in the Netherlands or to advice on managing activities and sleep.
The consultations will be conducted using Skype and will involve children and their parents. The children will answer questions and keep diaries and will have regular consultations with therapists, usually weekly. A full course will comprise 19 consultations, and Crawley hopes that, after allowing for loss to follow-up, she will have 330 children in each group to compare. The first 12 months of the study, funded by the National Institute for Health Research, will be designed to establish whether this many patients can be recruited.
CBT is a recognised treatment for CFS, recommended by the National Institute for Health and Care Excellence (NICE) in 2007 and confirmed to show benefit in adults by the PACE trial.1 Crawley expects outcomes in children to be better than in adults, partly because treatments generally seem to work better in children. The Dutch results showed that, after six months of the FITNET programme, results were much better than with normal care: 75% of children were back in full school attendance, compared with 16% in normal care, and 78% of the FITNET group said that they had completely recovered or now felt much better, compared with 27%.
The whole UK trial will cost £994 430 (€1.1m; $1.2m) and should be complete by 2022. Crawley believes that the online element is important because so many children who suffer from CFS (also known as CFS/ME) live in places where specialist care is unobtainable.
“I don’t think patients should travel a long distance to be seen, as this is so difficult for them, so they will be assessed locally and then treated online,” she told a briefing organised by the Science Media Centre at the Academy of Medical Sciences in London. “This might be really good for patients, or it might make it harder for them. My view is that, even if we show a lower rate of recovery, this is still going to be very important for patients because, at the moment, they cannot access anything.”
CFS is very common in children, said Crawley, with an incidence of 1-2%. A screening study she conducted showed that 1% of children were missing school one or more days a week as a result of CFS and that 30% of these children experienced depression and anxiety. “It’s costly to children, to mothers, and to the healthcare system,” she said. “NICE guidance recommending either CBT or graded exercise therapy was issued 10 years ago, but most children can’t get it. The trial will aim to establish if it is possible to deliver CBT in this way and whether it is cost effective.”
Research into CFS is difficult, partly because of a vocal minority who disparage any psychological treatment for the condition, insisting on a biological cause that would have been found long ago if research had been directed properly. Crawley has long experience of such activists and is not discouraged, emphasising that her patients and their parents have no such beliefs and are open to any treatment that offers hope of improvement.
“My worry is that, if those campaigning against research succeed, the people who will suffer will be the children and teenagers with CFS/ME,” she said.
Dutch scientists will be part of the team, with a steering group chaired by Paul McCrone, of the Institute of Psychiatry at King’s
Another member of the steering group, Mary-Jane Willows, of the Association for Young People with ME, said, “We desperately need treatment for young people with ME that they can get wherever they are in the UK — children tell us they just want to get better.”
1 Torjesen I. Tackling fears about exercise is important for ME treatment, analysis indicates. BMJ2015;350:h227.