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Results Thirty young people with CFS/ME were interviewed (15 males, 15 females); mean age 13.2 years (SD 2.3), and 15 clinicians from a range of clinical disciplines and experience in paediatric CFS/ME (2 months to 25 years) of which 10 (67%) were female. Both young people and clinicians identified similar key outcomes: symptoms, activity, social participation and emotional wellbeing influenced by management and contextual factors. Disrupted school attendance was the impact described most often by young people. Clinicians said that changing sleep was fundamental for improvement. Clinicians described problems with using school attendance as an outcome measure as it is often reduced during treatment and did not necessarily reflect a child’s disability or whether they were coping. Young people described a unidirectional relationship of anxiety, low mood and stress as a consequence of their symptoms and the reduction in usual activities, socialising and ability to keep up with school. Clinicians revealed the circularity of low mood with children becoming more vigilant to symptoms and lower thresholds for activity and participation driving further low mood.

Complexity, context and considerations for treatment in CFS/ME: children’s versus health professional’s conceptual model