UK to trial online therapy for children with chronic fatigue syndrome
Up to 2% of children and young people in the UK are affected by chronic fatigue syndrome (CFS), also known as myalgic encephalopathy (ME). Now, more than 700 of these young people will participate in the largest clinical trial ever undertaken for CFS, the FITNET-NHS (Fatigue In Teenagers on the interNET –National Health Service) trial.
CFS/ME is a debilitating disease which has a major impact on the lives of those affected, causing persistent exhaustion that doesn’t go away with rest or sleep. About one-third of children go on to develop additional problems with low mood or stress but we do not know how to treat this.
However, most of the children affected by the condition do not have access to treatment. The latest clinical trial is based on methods that proved to be successful in the Netherlands in 2012. The results showed that 63% of those who took part recovered within six months and were able to return to school and a normal life as compare with the just 8% of those who received other care.
The FITNET-NHS will deliver Cognitive Behavioral Therapy (CBT) to young people with CFS/ME and their parents using e-consultations. The sessions are conducted with a therapist over the internet, using Skype, diaries and questionnaires.
In the control group of the FITNET-NHS trial, children will receive a treatment called Activity Management using video conferencing.
This means children who live in parts of the country where no therapy is currently available will be able to get treatment in their own homes.
Lead investigator Esther Crawley, Professor Child Health in Bristol’s School of Social and Community Medicine, said that 1% of children at secondary school are missing one day a week because of CFS/ME.
“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,” Crawley said, adding that she can’t assess a child who has been traveling for hours.
The FITNET-NHS trial is also supported by the Association of Young People with ME (AYME). Its chief executive, Mary-Jane Willows, said: “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.”
The trial is being funded by the government-funded National Institute for Health Research and will examine whether the therapy helps young people and whether it is value for money for the NHS to adopt.
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