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Research study to investigate a chronic childhood condition

Press release issued: 3 March 2010

A research team led by Dr Esther Crawley, Consultant Senior Lecturer in Community-Based Medicine, has been awarded £164,000 to look into interventions and treatment options for a chronic childhood condition.

A research study looking into interventions and treatment options for a chronic childhood condition has been awarded funding of £164,000 by the Linbury Trust and the Ashden Trust.

The funding has been awarded to a research team led by Dr Esther Crawley, Consultant Senior Lecturer in the University's Centre for Child and Adolescent Health and Consultant Paediatrician at the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust.

Esther and her team will carry out a pilot project to investigate whether it is possible to look at two different approaches to the intervention and treatment of chronic fatigue syndrome/ME (CFS/ME) in children. 

The project called SMILE (Specialist Medical Intervention and Lightning Evaluation) aims to find out if it is feasible to recruit young people into a study to compare specialist medical treatment with specialist medical treatment plus the Lightning Process for young people with chronic fatigue syndrome or ME (CFS/ME).

CFS/ME in children is a relatively common and potentially serious condition affecting over one per cent of children across the UK. Over 50 per cent of affected children are bed bound at some stage of their illness and have an average time off school of one academic year.

Despite this there is a limited evidence-base for treatment for children with CFS/ME. This research also incorporates the first study on health economic cost of this condition in children.

Dr Esther Crawley said: “We are delighted to have been awarded this research grant. CFS/ME can have a profound impact on a child’s life. We hope that our research will enable us to understand more about this condition and how we can help those children who suffer with it.”

The team will carry out a pilot project to investigate how to recruit to a randomised controlled trial looking at the Phil Parker Lightning Process® and specialist medical care. This will be the first study of its kind in this area, and the team hopes to establish a basis for a larger scale multicentre research project.

The specialist 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 also provides services nationally. The team currently provides assessment and treatment for over 200 children from across the UK and Western Europe each year. Approximately ten per cent of the children referred into the service are housebound and are assessed at home.

The Phil Parker Lightning Process® is an intervention that is used for a variety of conditions including CFS/ME and has been developed from osteopathy, coaching and neuro-linguistic programming. It is a three-day training programme run by registered practitioners and designed to teach individuals a new set of techniques for improving life and health.

Phil Parker, designer of the Lightning Process said: “We are thrilled to have the opportunity to collaborate on this exciting and groundbreaking research with Dr Crawley and her team. It is vitally important that all interventions that could assist children with CFS/ME to return to school and improve their health are explored. We hope that this study is successful and leads to further research collaborations between the Lightning Process and specialist teams like Esther’s.”

The study will involve in depth interviews with the patients and their parents, and the primary outcome measure will be school attendance after six-months. It is hoped that over 90 children aged between eight and 18 and their families will be involved in the study. They will be recruited after assessment by the specialist team at the Royal National Hospital for Rheumatic Diseases.

The study will begin in September 2010.


Further information

The RNHRD NHS FT is a national specialist rehabilitation and rheumatology hospital based in bath. Offering services to adults, children and young people the Trust has expertise in general and complex:
· Rheumatological and musculoskeletal conditions
· Neurological rehabilitation
· Chronic pain management
· Chronic Fatigue Syndrome/ME
Please contact Joanne Fryer for further information.
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