ACT-CFS Pilot Study - Pilot Study to Evaluate an Innovative Activity Scale for Children and Adolescents with ME/CFS

Project description

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome(ME/CFS) is a complex chronic disease that is characterised by the two main symptoms fatigue and post-exertionalMalaise (PEM). ME/CFS usually results in reduced activity level, which leads to a limited participation of those affected in almost all areas of life. In order to provide for adequate supply structures aimed at pediatric patients, it is first neccessary to obtain an objective assessment of the activity level. The most commonly used scale in this area is the Bell Score, which, however, does not sufficiently differentiate the limitations associated with ME/CFS and does not reflect the age of very young.

Other questionnaires for assessing activity levels often do not meet the criteria mentioned, are unsuitable for children and young people or have not yet been studied, such as the Dahl activity scale. At the MRI Chronic Fatigue Center for Young People (MCFC), the MCFC activity scale was developed to assess the severity of impairment across five domains, and thus as disease-specific as possible, to enable differentiated assessment of the activity level. The scale is based on various established questionnaires, the modules for determining the level of care, the international classification of functioning, disability and health (ICF) and the clinical experience of the MCFC team and their cooperation partners. This questionnaire and the Dahl activity scale are currently being used in a study on children and adolescents with ME/CFS and the results are being compared with those of the established Bell Score. The aim is to validate the new scale and develop a suitable scoring system.

(Description adapted from project website: see link above)