ME/CFS Lines: A multidisciplinary consortium & biobank to unravel the causes of ME/CFS in Lifelines

The goal of ME/CFS Lines is to establish a multidisciplinary research infrastructure and build a longitudinal ME/CFS patient cohort and biobank, based on the existing population cohort Lifelines. This cohort has included diagnostic criteria for ME/CFS since 2014.

Lifelines is the only population-based cohort and biobank worldwide to include diagnostic criteria for ME/CFS. In 2018, 2,500 Lifelines participants met CDC criteria for ME/CFS. Since then, at least another 400 people within the Lifelines cohort have developed ME/CFS. These cases provide unique possibilities to study the development of ME/CFS since we have biomaterials of these patients before and after development of ME/CFS. In these participants, in addition to the CDC, the IOM, ICC and CCC criteria sets will be mapped. In the subprojects, these may be linked to various biomedical mechanisms.

The consortium focuses on establishing a multidisciplinary research infrastructure for ME/CFS. Harmonizing data and methods, working in (inter)national collaborations and disseminating knowledge and research results are key activities for the consortium. Within the consortium, new and experienced researchers from different backgrounds will be introduced to ME/CFS research. The consortium will train a generation of young researchers with the goal of improving the long-term perspective for ME/CFS research. 

There are four subprojects associated with ME/CFS Lines in which research is conducted into the causes, diagnosis and treatment of ME/CFS. The projects are: 

• Antibody repertoires against microbiota as biomarkers for ME/CFS (CFSmicroAbs)
• A role of microbiome in the pathogenesis of ME/CFS: a population-based study
• Identifying causal biological mechanisms in ME/CFS by a functional genetic approach
• Post-exertional malaise: a starting point to study and understand ME/CFS

Within the projects and the consortium, work is done according to FAIR principles, making data usable for other researchers. In collaboration with the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium and other (inter)national partners, data harmonization and data exchange are being realised.

Several partners are involved in this project. The cooperating parties are:

• Universitair Medische Centrum Groningen 
• Medizinische Universität Wien
• Erasmus MC 
• Virginia Commonwealth University 
• TU Delft 
• Pluut & Partners 
• ME/CVS Nederland 
• Lifelines

Pluut&Partners is a consulting agency that will help us reach patients and disseminate the results and knowledge gained from our research. Patient representatives from ME/CVS Nederland were closely involved in drafting the research proposal. They will remain involved throughout the project: exchange views on research questions, interim findings, progress and the final interpretation and utilization of the research results. The patient representatives involved will be paid for their efforts.

In addition, the ME/CFS Lines consortium collaborates with another ZonMw-funded consortium, the Netherlands ME/CFS Cohort and Biobank (NMCB) consortium.

This consortium aims to contribute to the establishment of a multidisciplinary research community and data collection that will lay the foundation for a research program that can unravel the causes of ME/CFS. Specifically, it aspires:

• A multidisciplinary research community, consisting of ME/CFS experts, experienced researchers with relevant expertise who are new to the research field as well as a new generation of novice researchers who can start building research lines focused on ME/CFS. Patient representatives are also closely involved. 
• The establishment of a longitudinal patient cohort with biobank that enables researchers within and outside the ME/CFS Lines consortium to conduct research, develop innovative methods and test new ideas and hypotheses.

Extensive collaborations and Open Science are essential in research. Therefore, all outcomes will be published in an accessible manner. This research follows FAIR principles and ethical standards with regards to privacy and well-being of patients and participants.