Key Features of a Multi-Disciplinary Hospital-Based Rehabilitation Program for Children and Adolescents with Moderate to Severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ME/CFS

Sonya Hiremath, Montserrat Doukrou, Halina Flannery, Catherine Carey, Anna Gregorowski, Joseph Ward, Dougal Hargreaves and Terry Yvonne Segal ()
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Sonya Hiremath: Victoria Hospital Kirkaldy, NHS Fife, Kirkcaldy KY2 5AH, UK
Montserrat Doukrou: St Bernard’s Hospital, Gibraltar Health Authority, Gibraltar GX11 1AA, UK
Halina Flannery: University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK
Catherine Carey: University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK
Anna Gregorowski: University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK
Joseph Ward: UCL GOS Institute of Child Health, London WC1N 1EH, UK
Dougal Hargreaves: School of Public health, Imperial College London, London SW7 2AZ, UK
Terry Yvonne Segal: University College London Hospitals NHS Foundation Trust, London NW1 2BU, UK

IJERPH, 2022, vol. 19, issue 20, 1-13

Abstract: Purpose of the study: There is limited published data on treatment or outcomes of children and young people (CYP) with moderate or severe Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Here, we describe outcomes of moderate and severe ME/CFS in CYP treated in a tertiary adolescent service. This information is useful when planning services for CYP and families affected by moderate/severe ME/CFS and to guide future management trials and commissioning decisions. Study Design: A retrospective review was conducted of medical records of the 27 CYP who received ward-based treatment in 2015. Notes were retrospectively reviewed to assess progress in four markers of wellbeing over the period of treatment: (i) mobility, (ii) education, (iii) sleep and (iv) involvement in social/recreational activities. Results: A total of 23/27 (85%) showed improvement in one or more domains over their period of ward-based therapy. 19/27 (70%) of patients showed improvement in physical ability. In 15/23 patients (65%), there was an improvement in ability to access education, in 12/24 (50%) sleep improved, and 16/27 (59%) demonstrated an improvement in socialising/ability perform recreational activities. Conclusion/Implications: A multidisciplinary hospital-based rehabilitation programme for moderate and severe ME/CFS was associated with improvement in at least one area of wellbeing in 85% of the CYP we reviewed. These data may be used as a baseline to evaluate the impact of other models of delivering care for this patient group. It may be useful when considering other groups such as those affected by Post-COVID Syndrome.

Keywords: adolescent; moderate; severe; chronic fatigue syndrome; myalgic encephalomyelitis; myalgic encephalopathy; outcomes; treatment; inpatient; measure; young people; long COVID (search for similar items in EconPapers)
JEL-codes: I I1 I3 Q Q5 (search for similar items in EconPapers)
Date: 2022
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