Lead: Esther Crawley, with Lucy Beasant, Helen Bould, Simon Collin, Andrew Haig-Ferguson, Debbie Johnson, Avril Missen, Louise Morphey, Hanne Pederson, Rodney Saunders and Sophie Velleman.
Having used the ALSPAC cohort to look at the prevalence of fatigue at age 13 (over 2%), we are now working on looking at factors associated with and predictors of fatigue in this age group. We also have a longitudinal cohort from the clinical service of over 800 children who are followed up at 6 weeks, 6 months and annually. This cohort has enabled us to look at the different types of CFS/ME in children, the types of anxiety experienced and associations with school attendance. Findings generate hypotheses that we study using a variety of approaches such as a qualitative study (Hanne Pederson) looking at the development of anxiety in children with CFS/ME.
Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME) - National Outcomes Database
The aim of the CFS/ME National Outcomes Database (NOD) is to enable service evaluation and benchmarking of specialist CFS/ME services within the NHS. Since its inception, the NOD team have collected data from over 4,000 adult and paediatric CFS/ME patients. By the end of 2010, more than 40 clinical teams will be contributing data.
The NOD was designed in collaboration with the British Association for CFS/ME (BACME) and the charity Action for ME, who fund the day-to-day running of the NOD.
Patient data are collected at clinical assessment and at regular follow-up intervals. Clinicians record diagnostic information and patients complete questionnaires which provide data on fatigue, pain, anxiety, depression, sleep, physical ability and the impact of their illness on education and employment.
Service evaluation and benchmarking focus on patient outcomes at 12 months post-treatment. The NOD team produce quarterly reports containing comparisons of patient outcomes across all teams. This will allow us to identify best clinical practice. By routinely measuring these outcomes, and benchmarking services against other teams, teams can work together to achieve the best outcomes for patients. The NOD also provides the infrastructure for future research.
SMILE - Specialist Medical Intervention and Lightning Evaluation
As a follow up to a school screening project finished last year, we are now developing school nurse screening and an early intervention to be delivered in schools, with the aim of investigating whether early intervention can prevent the development of long term fatigue.
We are very interested in the impact CFS/ME has on families. We have completed our work on the financial impact and are about to look at the impact on relationships and siblings.