Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study.

OBJECTIVES: Primary objective: to determine the point prevalence and incidence rate of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children aged 5-16 years over 13 months. SECONDARY OBJECTIVES: to describe the demographic features, symptoms, impact on activities of daily living, school attendance and time to diagnosis. DESIGN: Prospective surveillance study conducted by the British Paediatric Surveillance Unit. Paediatricians was asked if they had assessed a child with severe ME/CFS (screening definition for prevalence and incidence: children (5-16 years) diagnosed with ME/CFS so severe that they are unable to attend school for more than 1 hour a week during the last 6 weeks of the school term). PARTICIPANTS: Patients 5-16 years of age, seen by paediatricians and two large ME/CFS specialist services across the UK and Ireland. OUTCOME MEASURES: Paediatrician-completed questionnaires describing demographics, symptoms, function and treatment, (applying National Institute for Health and Care Excellence (NICE)-recommended criteria to assess severity of ME/CFS). Diagnosis of severe, probable severe or possible severe ME/CFS was made only with evidence of NICE-recommended screening blood tests. RESULTS: 285 cases were reported, of which of which 33 were severe, 4 probable severe and 55 possible severe. Estimated prevalence was 3.2 per million children (95% CI 2.2 to 4.5). Including possible/probable severe ME/CFS gave 8.9 per million children (95% CI 7.2 to 11). The incidence rate was 0.90 per million children-years (95% CI 0.43 to 1.65) (1.97 per million children-years (95% CI 1.24 to 2.99)). Median age was 13 years and 58% of cases were female. Median time to diagnosis was 0.47 years. CONCLUSIONS: Although the incidence of children presenting with severe ME/CFS is low, all were very disabled. In addition, the majority receive little or no education. Paediatricians need to consider how to provide rehabilitation and education for these disabled young people.

Investigating the effectiveness and cost-effectiveness of FITNET-NHS (Fatigue In Teenagers on the interNET in the NHS) compared to activity management to treat paediatric chronic fatigue syndrome (CFS)/myalgic encephalomyelitis (ME): amendment to the published protocol.

The FITNET-NHS Trial is a UK, national, trial investigating whether an online cognitive behavioural therapy program (FITNET-NHS) for treating chronic fatigue syndrome/ME in adolescents is clinically effective and cost-effective in the NHS. At the time of writing (September 2019), the trial was recruiting participants. This article presents an update to the planned sample size and data collection duration previously published within the trial protocol. TRIAL REGISTRATION: ISRCTN, ID: 18020851. Registered 8 April 2016.

Validation of the English Version of the 14-Item Mediterranean Diet Adherence Screener of the PREDIMED Study, in People at High Cardiovascular Risk in the UK.

The aim of this study was to examine the validity of the English version of the PREvencion con DIetaMEDiterranea (PREDIMED) 14-item Mediterranean Diet Adherence Screener (MEDAS), a brief questionnaire assessing adherence to the Mediterranean diet (MedDiet), which was used in the PREDIMED trial for assessment and immediate feedback. This instrument (MEDAS) was administered to 96 adults with a high cardiovascular risk (66% women, mean age 68.3 ± 6.0 years), recruited from general practices in Bristol, UK. Participants then completed a 3-day estimated food record, and the MEDAS was administered again one month later. A MedDiet score (range = 0-14) was calculated from the MEDAS' administrations and food record to assess concurrent validity and test-retest reliability. Predictive validity was assessed by examining the association of the MEDAS-derived score with cardiometabolic risk factors and dietary intakes derived from the food records. The MEDAS-derived MedDiet score was higher by 1.47 points compared to food records (5.47 vs.4.00, p < 0.001), correlated moderately with the record-derived score (r = 0.50, p < 0.001; ICC = 0.53, p < 0.001) and there was borderline fair agreement between the two methods (κ = 0.19, 95% CI 0.07-0.31, p = 0.002; 95% limits of agreement -2.2, 5.1). Exact agreement within score categories and gross misclassificationwere 45.8% and 21.9%, respectively. The distribution of dietary intakes, reported on the food records by the MEDAS-derived total MedDiet score, was in the expected direction, but no association was observed with cardiometabolic risk factors. The two administrations of the MEDAS produced similar mean total MedDiet scores (5.5 vs. 5.4, p = 0.706), which were correlated (r and ICC = 0.69, p < 0.001) and agreed fairly (κ = 0.38, 95% CI 0.24-0.52, p < 0.001; 95% limits of agreement -3.1, 3.2). The English version of the MEDAS has acceptable accuracy and reliability for assessing MedDiet adherence among individuals with a high cardiovascular risk, in the UK, and can be used to rank individuals according to MedDiet adherence in research and practice.