The extent of the vision and investment into ME/CFS research in the Netherlands is becoming apparent and announcements have already been made on the funding of two consortia and a number of sub-projects but it is worthwhile to look at the bigger picture of what is in train in the Netherlands.
A 28.5 million euros 10-year programme was announced in April 2023 in pursuance of the Dutch Minister of Medical Care and Sport, Tamara van Ark’s, 2021 direction to ZonMw to carry out a biomedical research programme on ME/CFS. ZonMw is a partnership between ZorgOnderzoek Nederland (Care Research Netherlands – Dutch abbreviation: ZON) and the Medical Sciences (Dutch abbreviation: MW) division of the Dutch Research Council – hence ZonMw. It is an independent self-governing organisation which programmes and funds research, encourages impact, and defines areas where knowledge is needed.
The ZonMw research programme on ME/CFS, focuses on research into the causes, diagnosis and treatment of the disease and aims to lay the foundations of a solid and sustainable research infrastructure in ME/CFS. Collaboration between different research disciplines, international research groups, different professional groups, clinics and patients has also being identified as key to success over the decade to come.
Two consortia have been funded
- ME/CFS Lines
UMC Groningen is working with various research partners to build a patient cohort and expand the ME/CFS Lines biobank. This biobank builds on LifeLines, an existing biobank with data and biomaterials from 167,000 participants from the northern region of the Netherlands. The biomaterials are examined through several research areas relevant to ME/CFS, namely: genetics, proteomics, metabolomics, immunology and the microbiome. With this data, researchers can figure out how changes in these areas may trigger ME/CFS.
The Lines consortium has 4 sub-projects but the award has not been without comment- Post-exertional malaise
- Immune responses to Microbiotics as Biomarkers for ME/CFS.
- The role of the gut microbiome in the onset and development of ME/CFS is to be investigated.
- ME/CFS and Genetics.
- Post-exertional malaise
- The Dutch ME/CFS Cohort and Biobank (NMCB)
Led by the Amsterdam University Medical Centre Amsterdam UMC this consortium is a collaboration of research institutes, with imbedded patient organisations and input, and clinical centres focused on biomedical research in ME/CFS. One of its activities is to establish a patient cohort and a biobank. The biobank collects medical and biological patient data for research and forms a patient registry for clinical studies specifically to include seriously ill patients who are housebound due to ME/CFS.
The Lines consortium has 6 sub-projects- Immune signatures. This project will examine blood from the ME/CFS biobank for the presence of various immune signatures.
This project investigates which changes in immune cell metabolism may be the cause of ME/CFS conducted with antibodies from ME/CFS patients
Investigating which changes in immune cell metabolism may be the cause of ME/CFS by examining ME/CFS and post-infectious fatigue syndromes (PIFS) e.g. Long-COVID and Lyme disease.
Brain changes in ME/CFS. Establishing a brain donor programme to collect brain tissue from ME/CFS patients and making it available for research.
Muscle and blood changes in PEM. The primary aim of the project is to gain a better biomedical understanding of muscle pain, fatigue and post-exertional malaise in patients with ME/CFS.
- Autoimmunity as a cause of ME/CFS. One possible cause of ME/CFS is autoimmunity, where people produce antibodies against their own body.
- Immune signatures. This project will examine blood from the ME/CFS biobank for the presence of various immune signatures.
Based on ZonMw Article
