Author:
Hieber Hannah,Pricoco Rafael,Gerrer Katrin,Heindrich Cornelia,Wiehler Katharina,Mihatsch Lorenz L.,Hägele Matthias,Schindler Daniela,Donath Quirin,Christa Catharina,Grabe Annika,Kircher Alissa,Leone Ariane,Müller Yvonne,Zietemann Hannah,Freitag Helma,Sotzny Franziska,Warlitz Cordula,Stojanov Silvia,Hattesohl Daniel B. R.,Hausruckinger Anna,Mittelstrass Kirstin,Scheibenbogen Carmen,Behrends Uta
Abstract
ABSTRACTMyalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multi-systemic disease characterized by a complex, incompletely understood etiology. To facilitate future clinical and translational research, a multicenter German ME/CFS registry was established to collect comprehensive, longitudinal, clinical, epidemiological, and laboratory data from adults, adolescents, and children in a web-based multilayer-secured database.Here, we present the research protocol and first results of a pilot cohort of 174 ME/CFS patients diagnosed at two specialized tertiary fatigue centers, including 130 (74.7%) adults (mean age 38.4; SD 12.6) and 43 (25.3%) pediatric patients (mean age 15.5; SD 4.2). A viral trigger was identified in 160/174 (92.0%) cases, with SARS-CoV-2 in almost half of them. Patients exhibited severe functional and social impairment, as reflected by a median Bell Score of 30.0 (IQR 30.0 to 40.0) and a poor health-related quality of life assessed with the Short form-36 health survey, resulting in a mean score of 40.4 (SD 20.6) for physical function and 59.1 (SD 18.8) for mental health.The MECFS-R provides important clinical information on ME/CFS to research and healthcare institutions and, together with a multicenter ME/CFS biobank, will pave the way for research projects addressing the pathogenesis, diagnostic markers, and treatment options.Trial registration:ClinicalTrials.govNCT05778006.
Publisher
Cold Spring Harbor Laboratory