Severe CFS/ME of Juvenile Onset— A Report from the CHROME Database

CHROME has been collecting data since 1995 on very severely disabled patients in the UK with ME, in order to assess aspects of physical and cognitive levels of disability at the onset of the illness and to monitor progress. Results of the first two years data (225 cases) collection are reported.The modal age of onset for this severe group of patients was 11-15, and the proportion increased with more recent years of onset. Patients tended to deteriorate between onset and recruitment in cognitive and functional ability, and in sensory and sleep disturbance. Statistical significance was assessed using McNemar's Test for comparing correlated proportions.