- Last Updated: 23 November 2015 23 November 2015
Advances in paediatric practice
Diagnosis and management of paediatric practice in Australia
Almost a whole morning was devoted to paediatric research. Diagnosis and management of paediatric CFS/ME in Australia was discussed by Sarah Knight (Melbourne, Australia). An online survey was sent to registered paediatricians. She pointed out that there are more challenges in adolescence and most with this illness miss on average a year of school. 39% of the National Network of Paediatricians see patients with CFS/ME. A large number of comorbidities were diagnosed. There was wide variation is diagnostic and management practices, which may reflect a lack of knowledge of diagnostic criteria and a paucity of management guidelines.
Impaired range of motion
Peter Rowe (Baltimore, USA) presented work on the impaired range of motion (ROM) in adolescent CFS/ME. 55 patients and 48 matched “flexible” controls were studied. Impaired ROM was more common in CFS/ME than controls. There was wide overlap with Ehlers Danlos Syndrome (EDS) with a number of postural abnormalities such as slumping. There was abnormal range of movements in the limbs and spine, which were worse for 1-2 days after longitudinal strain therapy in a subset, but there was eventually overall improvement in CFS/ME symptoms after the therapy.
Tracking post-infectious fatigue
Tracking post-infectious fatigue in a clinic using routine lab testing was addressed by Gordon Broderick (Florida, USA). 301 adolescents following diagnosis on infectious mononucleosis were studied and followed over 24 months. Incidence of CFS/ME at 6, 12 and 24 months was 13%, 7% and 4% respectively. Standard lab tests were performed at each point. 13 patients (all female) had a diagnosis of CFS/ME at 24 months. At 6 months, ACTH was lower and glucose was higher in those that were still ill at 24 months. Estradiol was lower and T4 was higher at 12 months. At 24 months neutrophils were above normal and basophils decreased. These results help to support early assessment of those who may go on to develop CFS/ME over time.
Delayed hypersensitivty reactions to foods
A further presentation by Peter Rowe (Baltimore, USA) concerned the prevalence of delayed milk-protein hypersensitivity in young adults with CFS/ME. Children who were “picky” eaters were associated with non-IgE mediated food allergies. Characteristic symptoms were epigastric pain and other gastro-intestinal symptoms. There was no mast cell activiation. There was a higher than expected prevalence in those with CFS/ME. Strict dietary avoidance led to clinical and histological response. The diet needs to be rigid, and supplements with multivitamins and calcium is needed.
Impact of CFS/ME on adolescence
Peter Rowe then looked at the impact of CFS/ME in adolescence. Self-reported quality of life is significantly lower for adolescents and young adults with CFS/ME compared to healthy controls, and lower than scores reported for adolescents with other chronic health conditions, such as cystic fibrosis, epilepsy, diabetes and renal transplants, and comparable to scores for those with fibromyalgia and paraplegic cerebral palsy.
What Australians adolescents find helpful in managing CFS/ME
Katherine Rowe (Melbourne, Australia) had looked at what young people find helpful in managing their chronic illness. She had studied 788 people over 18 years. 1200 questionnaires were returned. An individualized plan of their own allowed them control over their lives again and was very important. Included in this should be a pleasurable out-of-home activity each week. Not being believed was the most difficult thing to handle. “Quacks” saying they could cure the illness was very upsetting and a lot of money was wasted by parents in this way. Loss of social contacts often led to depression, but this is a healthy response. SSRIs were used. Engagement in education was the best predictor of functional outcome.
Her further paper looked at whether functional outcomes were associated with depression at presentation. Average duration of illness prior to first visit was 15 months. 25% were significantly depressed compared to base rate of depression in adolescents of 20%. Not being believed, difficulty remaining engaged with school and severity of symptoms were contributing and perpetuating factors. Functional ratings at follow up were less good than the non-depressed group, but the overall duration of the illness was not significantly different.
Sleep education in Japan
Japanese are one of the most sleep-deprived groups of people, and Seiki Tajima (Hyogo, Japan) talked about sleep education carried out since 2007, to help prevent school non-attendence in junior high school and to help prevent risk of paediatric CFS/ME. Teachers and lifestyle educators were involved. 83% of patients (66) with school non-attendence fitted the criteria for CFS/ME. Incidence of school non-attendence decreased year by year, with all of the group attending regularly by 2012.