£730,000 for research into Chronic Fatigue Syndrome in children
Press release issued: 27 February 2009
A new area of ground-breaking research to provide a better understanding of the cause, treatment and prevention of Chronic Fatigue Syndrome/ME in children has secured a prestigious fellowship and funding of £730,000.
This will be the first study to look at CFS/ME in children in such detail.
CFS/ME is a common childhood condition with potentially serious consequences for those affected, and is the most common reason for long-term absence from school. Despite this very little is known about it.
“I want to answer the many unresolved questions about the best ways to treat and manage the patients for whom I am responsible,” said Dr Crawley who is also Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust.
Dr Crawley’s research has three parts:
1) Investigate the causes of CFS/ME in children. Dr Crawley will use data from the University of Bristol’s Children of the 90s study to see how many children in the study had CFS/ME age 13yrs, and what factors predict CFS/ME.
2) Identify effective treatments for CFS/ME. She will examine the outcomes of care in children diagnosed with CFS/ME in different types of services across England to understand which are most effective in providing treatment.
3) Develop a school-based early intervention tool to prevent the development of CFS/ME in children. Dr Crawley will develop and test an education package for children who are missing school because of fatigue, to see if development of CFS/ME can be prevented. The economic impact of school absences due to fatigue will also be measured.
“This research is crucial to help us to understand the risk factors and prevalence of CFS/ME in children, and to give us an improved understanding of the most effective ways to treat and prevent the development of this condition,” she continued.
Dr Crawley’s research has been prompted by her involvement in the development of the National Institute for Health and Clinical Excellence (NICE) guidance for CFS/ME
She said: “My experience as a member of the NICE guideline development group for CFS/ME brought into sharp relief the deficits in the current evidence base.
“We do not know how common CFS/ME is in children, what the risk factors are for developing CFS/ME, whether CFS/ME can be prevented in children at high risk or what the best model for treatment is.
“Current models of care for children are based on adult evidence and there is no information on outcome, treatment or prognosis for children who are severely affected, or the very young.
“These gaps in knowledge were listed as research priority areas by the guideline development group, and this research plans to begin to address them.
"Throughout my clinical career I have aimed to base my practice on robust research evidence. This award provides an ideal opportunity for me to achieve my long-term goal of transforming the care of children with CFS/ME.”
The project will begin in March 2009 and will be carried out over a five year period.
The paediatric CFS/ME service at the Royal National Hospital for Rheumatic Diseases is the largest regional paediatric CFS/ME clinical service in the UK, and has a national reputation. The paediatric CFS/ME team treats around 200 new children and young patients from across the UK and Western Europe each year.