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Trial launched to test online treatment for chronic fatigue syndrome

Study to test if therapy works and is cost-effective for the NHS

Jo Carlowe

Tuesday, 01 November 2016

Today will see the launch of the largest clinical trial ever undertaken in Chronic Fatigue Syndrome (CFS). 

Over 700 children and young people are to take part in the trial, which will test out the effectiveness of an online treatment for CFS, which affects up to 2% of young people, most of whom do not have access to treatment. 

The trial will investigate whether FITNET-NHS (Fatigue In Teenagers on the interNET) is effective and offers value for money compared to Activity Management for children with CFS (also known as Myalgic Encephalopathy or ME).

For the first time, children and young people in both clinical groups of the trial will receive treatment at home. In the FITNET-NHS group, children and young people will receive treatment online. In the control group, children will receive a treatment called Activity Management using video conferencing.

FITNET delivers Cognitive Behavioural Therapy (CBT) to young people with CFS/ME and their parents using e-consultations. It was shown to be effective in the Netherlands in 2012 (63% recovered at six months compared to 8% cent who received usual care). 

However, it is not known if the treatment would work in the NHS, and whether FITNET-NHS is value for money. This trial will answer these questions and also find out whether treatment works for the smaller group of children with CFS/ME who develop problems with low mood or anxiety.

Lead investigator, Esther Crawley, Professor of Child Health in Bristol’s School of Social and Community Medicine, said: “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 with CFS/ME are desperate for specialist treatment and we need to think of new ways to deliver it.”

Professor Stephen Holgate, Medical Research Council Clinical Professor of Immunopharmacology and Honorary Consultant Physician within Medicine at the University of Southampton, said: “CFS/ME is an important disabling condition. It has been chronically underfunded for years. Patients deserve high quality research like this study.”

NICE guidance stipulates that children with CFS/ME should be offered referral to specialist services immediately if their condition is severe, or within three months if they are moderately affected, and within six months if mildly so. However, only an estimated 10% of UK children have access to a local NHS specialist service.

FITNET NHS is funded by the National Institute for Health Research (NIHR). It will involve clinical psychologists, statisticians, health economists and qualitative researchers. The results should be known in 2022.

Professor Hywel Williams, Director of the NIHR’s Health Technology Assessment (HTA) Programme, said: “Chronic fatigue syndrome (ME) is a disabling and common condition and there is a need for high quality research in this area especially for children and adolescents. The aim of the NIHR is to fund research that address important and enduring research gaps as well as being scientifically robust. The FITNET-NHS study meets these criteria and will add to the evidence base around treatments as well as potentially leading to improved health and care for young people with CFS/ME."

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