Background
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a common disorder affecting between approximately 0.1% and 0.89% of children and adolescents1 2 which can be disabling.2–4 It primarily involves severe fatigue but moderate to severe pain is common affecting over 60% of children with CFS/ME,5 compared with between 3.6% and 16.6% of healthy children.6 The pain experienced by children with CFS/ME may have similar underlying aetiopathological mechanisms to paediatric chronic pain syndrome.7 8 Chronic pain in paediatric CFS/ME is associated with worse fatigue and poor physical functioning.5 9
Pain in paediatric CFS/ME is poorly understood and there are no treatments specifically targeting pain in this population. Only five treatment studies included pain as an outcome measure.10 In these studies, treatments included (CBT (cognitive behaviour therapy), a ‘self-confrontation method’, the Lightning Process and low-dose clonidine). No intervention resulted in a significant reduction in pain although two studies suggested that pain may improve in those who are ‘recovered’ compared with ‘non-recovered’. Current NICE (National Institue for Health and Care Excellence) guidelines, for patients with CFS/ME from 5 years old to adulthood, suggest low-dose amitriptyline, ‘relaxation techniques’ and consideration of referral to chronic pain services, if appropriate.11 No specific guidelines exist for children. Although amitriptyline is used for pain in paediatric CFS/ME, there is no trial evidence to support its efficacy. In paediatric chronic pain more generally, multimodal interdisciplinary interventions have yielded positive results thus far,12 although within small studies.
Understanding children’s experiences of pain is important to develop targeted interventions as in other conditions.13–15 This paper aims to describe the experience of pain, its impact and treatments, in children with CFS/ME using a person-centred perspective.