From The Times, 2 November 2016. Story by science editor Tom Whipple.
A mixture of cognitive behavioural therapy and exercise treatment seemed to be effective for two thirds of ME sufferers.
Children suffering from ME will receive online therapy at home in a trial of an intervention previously shown to help two thirds of patients.
Between 1 and 2 per cent of children are affected by ME, or chronic fatigue syndrome, a debilitating condition that leaves them feeling persistently tired and often means they miss out on months of schooling.
The causes are unknown, but a study in the Netherlands found that a mixture of cognitive behavioural therapy (CBT) and exercise treatment, delivered through an app, seemed to be effective for two thirds of children.
Now the same treatment, which also involves controlling and cutting down on sleep, will be tried out on 350 young people in the biggest clinical trial into the condition. They will be compared with 350 children on conventional treatment.
Esther Crawley, a children’s doctor from the University of Bristol, said that the disease was devastating for young people. “The first thing they drop is socialising and fun things, then they drop school, so this is very different to teenagers just being tired,” she said.
She said that NHS help for ME is extremely patchy, meaning children have to travel from all over the UK to see her, often arriving exhausted and unfit to be seen. The new approach includes video consultations, allowing them to stay at home.
Even so, the treatment is controversial. Some ME sufferers are strongly opposed to the idea that the condition is psychological. One of the leading theories is that ME is the result of the body overreacting to a viral infection.
A major British trial involving adults that claimed to find there was an improvement after CBT and exercise has been heavily criticised by some ME activists and the researchers behind it have complained of harassment.
Professor Crawley said that she firmly believed the condition was biological in origin but that because no drug treatment existed the methods in the trial were the best option. She also said that changes to sleep and exercise have strong effects on the body. “It’s not a pill, but it might as well be a pill in terms of the changes to biology.”
The results of the study will be published in 2022.