P1 “She used to be Tigger and then she was Eeyore”: A qualitative study with children and young people with CFS/ME, exploring predictors of recovery and future treatment needs

Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) is relatively common and severely disabling. At least 15% of children do not recover by 12 months. We do not know why some children recover and others do not. This study aimed to explore the barriers to recovery experienced by adolescents with CFS/ME. Methods I recruited adolescents (aged 11-17 years old, with CFS/ME, who were still disabled by CFS/ME after 12 months of treatment), their parents and specialist healthcare professionals were recruited from a single specialist CFS/ME service in the UK. I conducted semi-structured interviews and focus groups to explore views on treatment received including barriers and facilitators, as well as views on their future. I used thematic analysis grounded in the views of the patients to identify patterns (themes) in the data. Results I recruited 12 children and young people, 11 parents and 7 specialist healthcare professionals. The following themes were identified (with barriers and facilitators apparent in each theme): 1. “awareness and support” from CFS/ME services, GPs, schools and family. Poor awareness resulted in increased time-to-diagnosis, school disengagement, stigmatising experiences, and significant stress for children and parents; family support, school understanding, and validation from the service was a ‘life saver’. 2. “CFS/ME is bigger than the fatigue” described the importance of managing CFS/ME as a ‘long and hard’ chronic illness with secondary health, social and educational consequences. Participants called for holistic therapies that focus on the broader definition of recovery and facilitate re-integration into ‘normal life’. 3. “Balancing routine and control in adolescents”: Children differed on whether routines and pacing were helpful or exacerbated low mood. 4. “Individualised” treatment was important: treatment combinations were helpful in different ‘phases of recovery’, which varied depending on social context, motivations, school input, and co-morbidities. Conclusion Adolescents identified common facilitators and barriers to recovery and a desire for treatment that takes social factors into account, with a holistic approach using a broader definition of recovery. Children and parents identified a need for better awareness, communication and integration within and between services, including GPs and schools.