Chronic Fatigue Syndrome (CFS/ME) in Children

Lead: Esther Crawley, with Lucy Beasant, Simon Collin, Debbie Johnson, Sophie Velleman and Roxanne Potgieter.

Our main interests in this area are:

The Epidemiology of paediatric CFS/ME

We are investigating how common CFS/ME is in children, the risk factors for CFS/ME and the overlap with other conditions using the ALSPAC cohort. We have already shown that CFS/ME is common in 13 year old children and is more common in families that have experienced adversity. We are currently investigating the prevalence at 15 and 16, what factors are associated with long term fatigue, the relationship between those with fatigue and those with pain. We are particularly interested in using the ALPSAC data to explore factors that increase the risk of developing CFS/ME.

We use data from our specialist CFS/ME service in Bath to help us understand the characteristics of paediatric CFS/ME. This means we now know that children who come to specialist services are very disabled, about a third have developed problems with mood and almost all of them have problems with memory and concentration.

The Epidemiology of adult CFS/ME

We are investigating trends in the incidence of fatigue symptoms and CFS/ME diagnoses in UK primary care over the past 12 years. Substantial changes in these trends might be expected to have occurred with growing awareness and recognition of CFS/ME as a legitimate disease and with the publication in 2007 of NICE guidelines for CFS/ME diagnosis and management. We will also investigate variation in the incidence of fatigue symptoms and diagnoses of CFS/ME and referrals to NHS specialist services by measures of social deprivation. In previous research we found that assessment rates for CFS/ME in some NHS specialist services were 40-50% lower in the bottom versus top socioeconomic quartiles. The aim of our research is to understand where and why these inequalities exist within the NHS and whether they are attributable to variation in diagnosis of CFS/ME within primary care.

We will be using data collected from NHS clinical teams to describe treatments currently provided by NHS specialist services for adults with CFS/ME, to investigate within-service and between-service variation in treatment programmes, to investigate whether current treatments lead to long-term improvements in the health and wellbeing of patients, and to investigate the relative cost-effectiveness of different packages of care. Data will be collected within the CFS/ME National Outcomes Database (NOD), which has been hosted at the University of Bristol since 2006.

Interventions

In 2015, we will be starting a programme of work to understand more about interventions and treatments for paediatric CFS/ME. This will include the following 3 projects:

a)      Investigating recovery. At the moment, we don’t know how we should define recovery in paediatric CFS/ME, when children recover and what factors might predict recovery. We need to know this to design trials. We are going to use a variety of strategies to investigate this in children who come to the specialist CFS/ME service.

b)      Investigating the use of exercise as an intervention in CFS/ME. National guidance suggests that children are offered different treatments including Graded Exercise Therapy. Teenagers with CFS/ME often want to get back to doing exercise and we don’t know how best to help them. We also don’t know if GET works, or whether there are side effects. We will therefore be conducting a multi-centre study to see if a trial is possible for this form of treatment.

c)      The most neglected children with CFS/ME are those who are housebound. There is currently no evidence about what they should be offered. We will talk to housebound children and those who have been housebound but are now getting better to understand what type of approach will be acceptable and feasible.

In October 2013, we will have finished recruitment for the SMILE trial. For more information see: SMILE - Specialist Medical Intervention and Lightning Evaluation

Preventing CFS/ME in children

We are involved in early intervention projects in children and in adults. In both cases, these projects are investigating whether it is possible to identify fatigue early and offer treatment. If this is possible, we will be able to develop full trials to investgate whether this is an effective method of reducing the development of CFS/ME.

Impact on families

We are very interested in the impact CFS/ME has on families and have finished studies investigating the impact on relationships and siblings.

Developing a Patient Reported Outcomes Measure for Children with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (CFS/ME).

This is a mixed methods PhD and the primary aim of this research is to develop and evaluate a CFS/ME child-specific Patient Reported Outcome Measure (PROM).  The PROM will be suitable for monitoring health outcomes in routine clinical settings, and in clinical trials and observational cohorts. The first stage involves qualitative studies with health professionals, children with CFS/ME and their parents, to understand patient experiences and health outcomes which are regarded as most important and relevant to children with CFS/ME and their parents/carers.