Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in Adolescents: Practical Guidance and Management Challenges

Abstract

This paper reviews the current understanding of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and whether any treatment strategies have been effective. ME/CFS is a condition of as yet unknown etiology that commonly follows an infective process. It includes a new onset of fatigue (of more than 3-6 month duration and not relieved by rest), post-exertional malaise, cognitive difficulties and unrefreshing sleep, and frequently orthostatic intolerance, somatic symptoms and pain. Long COVID has renewed interest in the condition and stimulated research with findings suggestive of a multisystem neuroimmune disease. There are no definitively effective treatments. Despite earlier recommendations regarding graded exercise therapy and cognitive behavior therapy, the current recommendations are managing symptoms, with lifestyle management and supportive care. This paper provides an outline of strategies that young people and their families have reported as helpful in managing a chronic illness that impacts their life socially, physically, emotionally, cognitively and educationally. As the illness frequently occurs at a time of rapid developmental changes, reducing these impacts is reported to be as important as managing the physical symptoms. Young people face a mean duration of 5 years illness (range 1-16 years) with a likely residual 20% having significant restrictions after 10 years. Their feedback has suggested that symptom management, selfmanagement strategies, advocacy and educational liaison have been the most helpful. They value professionals who will listen and take them seriously, and after excluding alternative diagnoses, they explain the diagnosis, are supportive and assist in monitoring their progress. Remaining engaged in education was the best predictor of later functioning. This allowed for social connections, as well as potential independence and fulfilling some aspirations. The need to consider the impact of this chronic illness on all aspects of adolescent development, as part of management, is highlighted.

Long COVID in pediatrics—epidemiology, diagnosis, and management

“…ME/CFS was documented as severe subtype of PCC in adults [ 29 , 30 ] and was recently reported by our pediatric group in patients with PCC younger than 18 years [ 31 ]. ME/CFS is associated with a HRQoL lower than in other chronic diseases, and significantly impairs social participation in most cases [ 21 , 22 , 32 ]. The clinical features of PASC resemble those of other post-acute infection syndromes (PAIS).…”

“…For the majority of children and adolescents with PASC, the prognosis is favorable, and symptoms decline within 6 months [ 83 , 84 ]. Accordingly, several pre-pandemic studies indicated that a significant number of children and adolescents with PAIS, including ME/CFS following primary EBV infection, recovered [ 32 , 38 , 44 ]. A pediatric long-term follow-up study of ME/CFS reported that “paying attention to social learning needs and educational support have been identified by young people as being of similar importance to medical management” [ 32 ].…”

Long COVID in Children: A Multidisciplinary Review

“…In children, specific hospital-based rehabilitation programs for ME/CFS have been reported in detail elsewhere, which seem to be effective also when following SARS-CoV-2 infection [ 141 , 142 ]. In particular, cognitive behaviour therapy has been demonstrated to be effective in adolescents [ 143 ], while acceptance and commitment treatment has been proposed as an alternative [ 141 ]. Interestingly, a double-blind study using intravenous immunoglobulin in adolescents showed promising findings, but it has not been replicated so far [ 144 ].…”

Immunological Patient Stratification in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

“…The lack of well-characterized patient stratification not only hinders the identification of biomarkers, which are urgently needed in diagnostics, but also ultimately impairs the definition of causative treatment approaches. Until today, there is no cure or approved treatment strategy for ME/CFS [ 21 ].…”