November 1, 2016

Testing a ‘controversial’ treatment for CFS/ME in children

In England up to two in 100 children have Chronic Fatigue Syndrome (CFS/ME), the illness means they are unable to go to school or do other activities for more than three months. In fact 1% of secondary school children miss a day a week or more because of it. Unfortunately controversy rages around the illness and the treatment. Most children will recover if they receive specialist treatment; however, there is very limited specialist care in the UK and approximately 90% of children live too far away to receive the treatment they need.

Cognitive Behavioural Therapy (CBT) is known to be effective for children and a very successful trial in the Netherlands showed it can be delivered over the internet, meaning children can be helped wherever they live. However, we do not know if the results can be replicated in the UK so researchers, amidst rising tension from some people who do not support treatments such as CBT or Graded Exercise Therapy, are now starting a large clinical trial to test whether this treatment would work in the UK and should be available on the NHS.

Journalists came along to the SMC to discuss issues such as:

• How much of an impact did this treatment have in children in the Netherlands? Why would it be different over here?
• What will the trial involve and when will you know whether the results are positive?
• Why is there such hostility around trials in children from some patient groups?
• What barriers are being put in the way of trials like this from going ahead?
• What do children with CFS/ME want and why is their voice not being heard?
• What are the next steps for this trial to proceed and, if they are successful, how quickly could the treatment be rolled out?

Speakers:

Prof. Esther Crawley, Professor of Child Health, School of Social and Community Medicine, University of Bristol

Prof. Paul McCrone, Chair of the independent steering group for the new trial and Professor of Health Economics & Deputy Director, King’s Health Economics at King’s College London’s Institute of Psychiatry, Psychology & Neuroscience