More than meets the eye: An exploration of secondary school experiences and support for children and young people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex, chronic medical condition affecting up to 2% of secondary school students in the UK. Characterised by debilitating fatigue and significant impairments in physical and cognitive functioning, ME/CFS can significantly affect school functioning. Despite this, UK-based research centring children and young people’s (CYP’s) perspectives on their school experiences, particularly regarding support, remains limited. This paper explores the secondary school experiences of CYP with ME/CFS, including experiences of support, to gather insights into how educational professionals can better support them. Retrospective semi-structured interviews conducted with six CYP were analysed using Reflexive Thematic Analysis. Findings are situated within an ecological context, acknowledging how education systems and societal attitudes influence experiences. This research highlights that there is more than meets the eye within the school experiences of CYP with ME/CFS. Physical, academic, social and emotional challenges make school participation hard work, requiring flexible and tailored adaptations to promote equity and inclusion. Whilst physical challenges are typically well recognised and supported, CYP often feel their social and emotional needs are overlooked and unsupported. A pervasive sense of invisibility shapes both their school experiences and support. Systemic barriers, including stigma, rigid systems, competing priorities, and power imbalances, further hinder access to timely, person-centred support in school. Relationships and resilience are key in supporting CYP in navigating the demands of secondary school with ME/CFS. This research amplifies the voices of CYP with lived experience of ME/CFS and highlights opportunities for more equitable, inclusive and holistic support. Findings informed adaptations to Carr’s ‘BASE’ model of inclusion and the development of a toolkit for school staff, Educational Psychologists, and school systems supporting CYP with ME/CFS. These contributions aim to improve understanding, attitudes, and support structures, ultimately enhancing experiences for CYP with ME/CFS in secondary schools.