The Netherlands ME/CFS Cohort and Biobank Consortium (NMCB)

Total grant inclusing sub projects: around 7,2 million euros

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Description of NMCB

The Netherlands ME/CFS Cohort and Biobank Consortium (NMCB) is the largest of the two consortia in terms of funding and number of participating parties. NMCB has established contacts with all seven university medical centers (UMC’s) in the Netherlands, three specialized ME/CFS clinics, and with patient organizations. ME/CFS Foundation Netherlands has been involved in this initiative from the start and will also have a seat on the executive board of NMCB. Additionally, there is an international advisory board with well-known names from the scientific ME/CFS community, such as Jonas Berqquist of the Open Medicine Foundation, Luis Nacul of the UK MeCfs Biobank, and Carmen Scheibenbogen of the Charité UMC in Berlin.

NMCB aims to establish a patient cohort with a biobank¹. 750 ME/CFS patients will be recruited and followed for 8 years. (See here for more information.) Approximately one quarter of the cohort consists of severely ill patients who are home- or bed-bound. 450 healthy individuals and 500 people suffering from related diseases such as long COVID, Lyme disease, Q fever, and MS will be recruited as controls. In addition, a separate cohort of 180 young patients aged 12 and above, along with 80 controls, will be recruited. ME/CFS patients will be recruited through the patient organizations and specialized clinics. The 1300+ pre-registrations already available at ME/CFS Foundation Netherlands will surely help.

Establishing a patient cohort from scratch takes time: an organization must be set up, and patients must be contacted and examined. Not every ME/CFS patient can participate, as the cohort must be designed to be representative of the entire group of ME/CFS patients. Insights gained from our cluster research can be helpful in designing the cohort (Classification of ME/CFS patients based on their common symptoms – ME/CVS Stichting Nederland (mecvs.nl)).

Furthermore, legal aspects and obtaining approval from the medical ethics review committee (METC) are also crucial. All the preparatons together might take a year or so. NMCB officially starts in August, but preparatory work can be done in the next few months. Once the cohort is established, research can start quickly.

Comparison of patient data with the other consortium will be possible. The NMCB biobank will be harmonized with the MeCfs Lines biobank, keeping a close eye on the UK ME/CFS Biobank. Both consortia use the comprehensive DePaul questionnaire to compare and classify patients based on the four well known criteria sets Fukuda/CDC, IOM, CCC, and ICC. NMCB and MeCfs Lines will also collaborate as much as possible at the project level.

Jos Bosch from the UMC Amsterdam leads the consortium. He has extensive experience leading interdisciplinary projects with a broad biological approach.

Our opinion on the NMCB consortium

As a patient organization, ME/CFS Foundation Netherlands has been involved in NMCB from the beginning. Despite the high costs of the consortium, we are pleased with ZonMw’s funding. We believe that NMCB can be a crucial link in the global ME/CFS research due to its connections with various stakeholders in the ME/CFS field. We advocate for as much collaboration as possible with MeCfs Lines, as we expect the research program to yield maximum value in this way. We have full confidence in the ten project leaders and the two consortium leaders that they will do so.

There are six sub-projects within NMCB consortium:

  • AutonoME: Autoimmunity as a cause of ME/CFS symptoms, Jeroen Den Dunnen
  • EnergiseME: Autoimmunity and immune cell metabolism disruptions in ME/CFS, Niels Eijkelkamp
  • A neurobiological and immunological comparison of ME/CFS and PIFS, Ruud Rijmakers
  • Brain changes in ME/CFS: Focus on the stress and immune system, Inge Huitinga
  • Skeletal muscle and blood adaptations during post-exertional malaise in patients with ME/CFS, Rob Wuest
  • Immune signatures in ME/CFS, Marjan Versnel

1 A biobank is a collection of biological material. This often concerns blood, saliva and/or feces.