New Trial Will Test Therapy for CFS in Children

Peter Russell

November 02, 2016

Recruitment has begun for a trial to test whether an internet-based therapy could be successfully used on the NHS for treating children with chronic fatigue syndrome (CFS).

A previous study has suggested that the technique could be effective in almost three-quarters of cases.

The condition, also known as myalgic encephalopathy (ME), affects around 2% of young people.

CFS is a serious condition that can cause long-term illness and disability.

Overall, it is estimated that around a quarter of a million people in the UK have the condition.

Missing School

Children and young people with CFS experience extreme fatigue, poor sleep and memory problems. At least 1% of teenagers miss a day a week of school because of the condition and frequently are unable to take part in social events and sport.

The trial will involve 734 youngsters. The £1 million cost is being funded by the research arm of the NHS.

It is designed to test whether FITNET (Fatigue in Teenagers on the InterNET) is effective and offers value for money compared with another therapy technique called Activity Management.

The two therapies bring different approaches to treating children and young people with CFS.

· FITNET-NHS: Half of the children in the study will be offered cognitive behavioural therapy (CBT). This 'talking therapy' will help them change their behaviours. They will also work through interactive online modules, answer questions and complete diaries.

· Activity Management: The remaining youngsters in the group will be given advice on managing their activities and sleep patterns from specialists over the course of 3 video calls. Responsibility for their care will be handed to GPs.

'We Need to Find Out Which Works Best'

FITNET was found to be effective during a 6-month trial in the Netherlands. The Dutch study found that 63% of volunteers who were treated with this therapy saw major improvements in their condition, compared with just 8% who received usual care.

However, it is not known whether the treatment is suitable for the NHS. For the trial, children and young people will be offered treatment at home.

Esther Crawley, professor of child health at the University of Bristol, will lead the trial. In a statement she says: "Children and their parents often travel a very long way to be seen in my clinic which is hard for families and makes effective treatment difficult.

"In this study, children in both the control group and the test group will be offered specialist treatment. We do not know which one is best but we need to find out.

'Children Desperately Need Treatment'

Mary-Jane Willows, chief executive of the Association of Young People with ME (AYME), comments in a statement: "We desperately need treatment for children with ME that they can get wherever they are in the UK.

"Most children cannot have treatment even though treatment improves their chance of recovery. Children tell us they just want to get better."

Recruitment for the trial will involve children aged 11 to 17 being referred by their GP to Bath Specialist Paediatric CFS/ME Service.

Those who may be suitable will be invited to find out more information about the study. Those who are interested will then have a discussion with a member of the research team about the study and will go through eligibility screening.

Participants will have to agree to be randomly assigned to one of the two groups.

Results from the trial are expected in 2022.

View Article Sources Sources


University of Bristol

Association of Young People with ME (AYME)

Effectiveness of internet-based cognitive behavioural treatment for adolescents with chronic fatigue syndrome (FITNET): a randomised controlled trial, S Nijhof et al, The Lancet, March 2012