How CFS/ME is experienced and perceived by parents and families.

Between 1 to 2% of children and young people will be affected by Chronic Fatigue Syndrome (CFS)/myalgic encephalomyelitis (ME). Published work has demonstrated the significant emotional and financial impact of having a child with CFS/ME on mothers (Missen et al, 2012), and also on the psychological wellbeing and quality of life of siblings (Velleman et al, 2015). We know that young people's representations of their CFS/ME play an important role in coping and outcome (Gray & Rutter, 2007). However, little is known about parental illness perceptions. This study will present descriptive data on parental illness perceptions in a cohort of adolescent CFS/ME patients presenting to specialist CFS/ME services using the Brief Illness Perceptions Questionnaire (BIPQ). Parental illness perceptions will be compared to the adolescents’ own illness perceptions. Parental illness perceptions will be compared between those young people with CFS/ME who have co-morbid depression, and those who do not have depression. Data about the perceived impact on the family will be presented from a qualitative study of young people with CFS/ME who were depressed (N=9).