NIHR Blog

Professor Esther Crawley

Worries that keep you awake at night

Author:

Professor Esther Crawley, Professor of Child Health, University of Bristol

Date: 10 May 2018

What do you worry about at night? Some people worry about their careers, others worry about the end of the world. I worry about children who suffer because effective treatment is not available to them. I probably ought to worry about the starving millions or those that die because they cannot get vaccinated. But in the UK, there are children who suffer because they cannot get help for their CFS/ME, and this is something we really ought to be able to sort out.

CFS/ME or chronic fatigue syndrome (or ME) is one of the most disabling conditions children and teenagers have to deal with. And they really suffer. Most of the children who come to my clinic are only attending school for two days a week. They have overwhelming fatigue and many are in constant pain. Because of their ME, they lose their friends, miss out on education and it causes almost unbearable stress and hardship on families. Understandably, 30 to 40% become depressed or anxious reducing their chance of recovery. CFS/ME is indiscriminate in who it touches. It is one of those illnesses I hope my children never have to deal with.

Treatment in children is reasonably effective. With specialist treatment, about two thirds will get much or completely better within 6 months, returning to full time school with minimal, if any, symptoms. But even though it is relatively common (at least 1% of secondary school children miss a day a week of school because of it), very few children have a local service to provide treatment. Without treatment, less than 10% will get better. If you think about it, that means that about 0.9% of teenagers are suffering needlessly, for months and months because of a lack of available treatment. I see these children years later, as they travel to my clinic in Bath, desperate for hope and help.

*Only approximately 15% UK children with CFS/ME currently have access to local specialist treatment (represented by the coloured areas in the map below)

Travelling makes symptoms worse for children with CFS/ME, so one way forward is to provide treatment online so children can receive specialist help at home. We are testing whether this works with the FITNET-NHS trial which compares two different treatment approaches: online CBT and Activity Management delivered by Skype. We always use integrated qualitative methods in our trials but (tissue alert), some of what we hear is just so sad:

“We got to the point where we got so desperate we said… refer us, we’ll do whatever we need to do.”

“[this trial] was a little bit like a lifeline, knowing that we could hopefully get some treatment”,

Integrated qualitative methods also challenges my pre-conceptions about teenagers, as it does everything else. Delivering treatment online seems such an obvious way forward for teenagers it is slightly surprising it hasn’t been done before. My teenagers are often attached to the Wifi by an invisible umbilical cord so I would assume all teenagers would love online treatment. But not all do. Some teenagers really hate the idea of Skype (many love it) and some really want a face to face assessment. Which I think probably just shows that we are all human, with different needs and the NHS needs to work on individualising how we deliver treatment as well as what treatment is offered.

  • For more information on the trial, including contact details and how to enrol, visit our website: CFS/ME treatment for UK teenagers - the FITNET-NHS Trial.
  • A brief information video about the FITNET-NHS trial for clinicians (including diagnostic signs of CFS/ME in children) is available here:

More information on the FITNET trial is also available on the NIHR Journals Library.

The views and opinions expressed in this blog are those of the authors and do not necessarily reflect those of the NIHR, NHS or the Department of Health and Social Care.
  • Summary:
    Professor Esther Crawley writes about how her trial is using an innovative way to offer access to treatment to patients through Skype. Her blog marks ME/CFS Awareness Week.
  • Year:
    2018
  • Author:

    Professor Esther Crawley, Professor of Child Health, University of Bristol

  • Include on homepage (most recent single tagged blog included):
    Yes
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