There will be an item about this story on the BBC Radio 4 ‘Today’ programme later this morning.
From The Guardian, 1 November 2016. Story by Sarah Boseley, health editor.
Hundreds of children and young people are to get treatment for chronic fatigue syndrome for the first time, to see whether methods that have proved highly successful in the Netherlands can be adopted by the NHS.
Up to 2% of young people are affected by CFS, also known as myalgic encephalopathy (ME). But few get any treatment, and attempts to help have sometimes stoked the row over the causes of the condition. Activists on social media frequently denounce doctors who suggest that psychological issues play any part in the disease.
Treatment given to young people in the Netherlands has had remarkable results, helping 63% recover within six months and return to school and a normal life, compared with 8% of those who had other care.
The children are given cognitive behavioural therapy to understand and overcome the debilitating exhaustion that neither sleep nor rest can help. The sessions are conducted with a therapist over the internet, using Skype, diaries and questionnaires. This means children will be able to get treatment in their own homes in parts of the country where there is nothing currently available to them.
Esther Crawley, a professor of child health at Bristol University, said she would argue that the trial she is leading is not controversial. “Paediatric CFS/ME is really important and common,” she said. “One per cent of children at secondary school are missing a day a week because of CFS/ME. Probably 2% of children are affected. They are teenagers who can’t do the things teenagers are doing.”
Young people and their parents travel from all over the UK to get to her clinic, she said. “They have been travelling for hours. I can’t assess a child who has been travelling for hours.”
Online consultations and therapy go down well with young people. “Teenagers don’t want to see someone face to face,” she said. “They want to do stuff online. We use a lot of Skype. Teenagers like Skype. They can switch you off.”
The trial has the support of the Association of Young People with ME, whose 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.”
But Crawley knows the therapy will not please everyone. “I think we are definitely going to get some opposition, but the people opposing the trial are not my patients,” she said. The children and young people who had tried the online therapy loved it, she said, and the parents were thrilled that there was a treatment that might help them.
Like other health professionals treating patients with CFS, she has suffered verbal abuse from activists. “I cope most of the time,” she said. “Sometimes I think about giving up.” Then she sees a patient who has waited a long time for a diagnosis and who could be treated.
“It really bothers me these children are not being seen. I think it is tragic,” she says.
Crawley said she does not consider CFS a psychological illness. If it were, she said, more young patients would be expected to develop low mood or anxiety. But that does not mean psychological therapy will not help, she said.
Young people may need counselling on their sleep patterns, for instance. Those with CFS sleep for a long time because of the fatigue, but that results in poor-quality sleep, which makes them more tired. One of the things the intervention attempts to do is reset their sleep patterns, so that they sleep less but better. That has a real biological effect, she said, changing hormones, appetite and mood.
The trial, involving more than 700 young people, is the largest ever carried out concerning CFS. It will investigate whether the Fitnet (fatigue in teenagers on the internet) treatment programme is effective and value for money compared with “activity management” – information from therapists on how to manage their sleep and activity. Those in the Fitnet group, and their parents, will get information but be asked to work through 19 interactive online CBT modules. The children will be asked to answer questions and write diaries. They will have a weekly online appointment with their therapist who will review their progress and give advice.
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.
‘I WANTED TO SLEEP ALL DAY’
Emma, aged 14, first fell ill with what she and her family later found to be CFS in 2011, when she was nine. “I started to get recurrent illnesses. I was feeling really achy with a sore throat. I didn’t feel tired at first. Gradually it got to where I wanted to sleep all day,” she said.
It was very stressful for Emma and for her family because it took more than three years before she got a diagnosis. At one point they were going to the doctor every week. They were told it was a virus and to get over it.
It was not until January 2015 that she got a diagnosis. There was not a specialist in CFS she could be referred to. The breakthrough for her family was making contact with AYME, which helped design a programme “to retrain her mind and body – it was like retraining a newborn”, said her mother. For Emma, the social contact she got through AYME’s online forum with other young people suffering the same disease was also crucial. She was very stressed. “I thought I was never going to get better. That led to worrying about my future,” she said.
If cognitive behavioural therapy had been available, she would have taken it. She does not agree with those who say CFS is entirely a physical illness. “I think they are wrong. It would help to talk to somebody about it. I was stuck in the house for a long time,” she said. “It would help to cope with it.”
Emma – not her real name – missed year 5, a lot of year 7 and most of year 8 at school. “I always wanted to have high grades. I was really paranoid about doing badly,” she said. She refused to be held down a year and is now doing very well after home tuition. “I would say I’m completely better,” she said. “I’m back to school full-time – but when I get ill with maybe a cold I still sleep for a long time.”