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£730,000 for research into Chronic Fatigue Syndrome in children

Posted Mar 03 2009 2:19pm
The press release from Bristol University on a new research grant awarded by The National Institute of Health Research to Dr Esther Crawley, Senior Clinical Lecturer at the Centre for Child and Adolescent Health at the University of Bristol, made me prick my ears up in anticipation. Could we finally be spending money to find the cause of this horrendous illness? Is there hope that I can finally find a way to return to my former life? Alas, my heart sank when I realised that Dr. Crawley sat on the guideline development group for the NICE guidelines. In the press release she says: “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.”

Sounds good right? Accept nowhere in the proposed study does she mention biomedical research.

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.

Sounds very much like she is aiming to look at the psychosocial approach but I may be wrong. I hope I am. How can we feasibly find treatment when we still don't know the biological cause. The need for research into possible viral, bacterial and mycoplasmic causes is where the money should be spent. This is where most real scientific research is headed. We are on the cusp of understanding and I have little doubt that we will find the organic cause soon. Unfortunately, research such as Dr. Crawley's may well represent a red herring and could be a complete waste of time and money.

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