Experiences of pain in paediatric chronic fatigue syndrome/myalgic encephalomyelitis: A single-centre qualitative study

Abstract

Background Moderate to severe pain affects up to two-thirds of children with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and is associated with worse fatigue and physical functioning. This research aims to gain a greater insight into pain experienced by these children. Methods Thematic analysis of qualitative data from semistructured interviews with 13 children with CFS/ME (mean age=15.3 years, 67% female) was completed. Results Thematic analysis enabled construction of three themes: children's wide-ranging experiences of pain, negative impact of pain and lack of effective treatment for pain and nine subthemes. The first theme demonstrated highly varied pain experiences, ranging from € like [being]... on fire', like € being stabbed' to € like...lead'. Children experienced pain in multiple sites and with wide-ranging frequency and severity. The second theme highlighted the profound negative impact of pain on multiple aspects of children's lives. Physical activity was severely impaired; some children € couldn't leave bed' or € couldn't...brush [their] own hair'. Abdominal pain meant some would € go...days without eating'. Pain substantially impacted on mental health, leaving children feeling € agitated', experiencing € really bad panic attacks' or making them € [want to] breakdown'. Children felt they € can't do the things that everyone else can do', had € missed out' and are € behind everyone'. Some avoided socialising as they € don't want to stop everyone else'. The final theme demonstrates the absence of adequate treatment for pain, with participants reporting € nothing has ever really got rid of it' and only € slightly [takes] the edge off' and other experiencing side effects. Conclusions Pain in paediatric CFS/ME is highly variable, common and often results in severe physical limitation and poor mental health. Effective treatments for pain represent an unmet need.