MeCfs Lines – A multidisciplinary consortium and biobank for unravelling ME/CFS aetiology in Lifelines

Description

In the ME/CFS Lines consortium, UMC Groningen is working with several research partners to build an ME/CFS cohort (patient group) and biobank based on the existing Lifelines population cohort. This cohort included data and biomaterials from 2,500 participants with ME/CFS in 2018. Since then, about 400 participants have developed ME/CFS. Using the biomaterials, genetics, microbiome, antibody repertoire, proteome and metabolome are mapped in ME/CFS patients. This data allows researchers to figure out how changes in these domains contribute to the emergence of ME/CFS. Purpose The purpose of ME/CFS Lines is to set up a multidisciplinary research infrastructure and build a longitudinal ME/CFS patient cohort and biobank, based on the existing population cohort Lifelines. Diagnostic criteria for ME/CFS have been included in this cohort since 2014. Approach/method of working Lifelines is the only population cohort and biobank worldwide that maps diagnostic criteria for ME/CFS. In 2018, 2,500 Lifelines participants met the CDC criteria for ME/CFS. Since then, there have been at least 400 people who have developed ME/CFS within the Lifelines cohort. In addition to the CDC, the IOM, ICC and CCC criteria sets will also be mapped for these participants, after which they will be related to various biomedical mechanisms in sub-projects. Because biomaterial is available from some of the participants from both before and after the development of ME/CFS, there is a unique opportunity to study the development of the disease. The consortium focuses in particular on setting up a sustainable knowledge infrastructure for ME/CFS, harmonizing data and working methods, working in (inter)national collaborations and disseminating knowledge and research results. Within the consortium, new and experienced researchers with different backgrounds are introduced to the ME/CFS- research. The consortium will train a generation of young researchers with the aim of improving the long-term perspective for ME/CFS research. (Description adapted from research network website: see link above)