In part implementation of a 28.5 million euros 10-year programme under 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, a grant in excess of seven million euros has been awarded to Amsterdam University Medical Centre (Amsterdam UMC) with a further 4 million euros for a second consortium in UMC Groningen.
Both consortia will use the comprehensive DePaul questionnaire to compare and classify patients based on the four well known criteria sets: Fukuda/CDC, Institute of Medicine (IOM), Canadian Consensus Criteria (CCC), and International Consensus Criteria (ICC).
The ‘Dutch ME/CFS Cohort- and Biobank (NMCB) Consortium’ – is a national collaboration of research institutes, patient organisations and clinical centres focussing on biomedical research in ME/CFS led by Amsterdam institutions. It is reported that the University of Amsterdam and Amsterdam UMC, along with more than 20 partners, will look to find answers to 3 fundamental questions:
1. What exactly happens in the body of people with ME/CFS?
2. How can diagnosis be improved?
3. What might be effective treatments?
Dutch university medical centres will take part in the consortium, including the Ministry of Health, with researchers pledging to coordinate their research protocols with large international cohorts, such as those in the UK, Germany and Canada. This will entail adopting and working within international research criteria. Such coordination means that data will soon be comparable; that results can reinforce each other’s work; and that such comparability will hopefully lead to usable results more quickly.
The team will also look at patients living with long-term symptoms after an infection, such as Lyme disease, Q fever or COVID, since a proportion of these patients meet the criteria for ME/CFS
As patient involvement is central to the project, patient organisation representatives are part of advisory boards for each of the three themes of the research – outreach, relevance and clinics.
Further, a strength of the initiative is the intent to involve those most affected by ME/CFS. Patients in this cohort will be visited at home by specially trained nurses and if they need to visit a research institution for a scan, for example, there is a intention that they be transported and accompanied where necessary.
In the past, it was precisely the most serious cases that often remained out of sight of researchers because they were too ill to participate in research. “We also focus on those patients who are housebound or even bedridden, whom we visit at home for measurements,” says Jos Bosch, an associate professor at the University of Amsterdam and research associate in Amsterdam UMC. In the consortium, biomaterials will also be collected from 100 patients with severe ME/CFS so that as much research as possible can be done on the most severe patients.
ME/CFS Lines Consortium may be the smaller of the two consortia in terms of financial investment but the larger in terms of data. It will also spawn sub-groups of research activity.
UMC Groningen intends utilising its 4 million euros grant to gather and study data and biomaterial from ‘Lifelines‘ (a large, multigenerational cohort study that includes over 167,000 participants from the northern population of the Netherlands of which approximately 2500 participants meet the ME/CFS criteria) to investigate the causes of ME/CFS and will be funded for eight years. In collaboration with others the researchers it will build an ME/CFS biobank within Lifelines by selecting patients and controls and, as with the Amsterdam UMC, the design of the study was prepared in conjunction with a patient association.
For almost a decade, diagnostic criteria for ME/CFS have been included in the Lifelines data collection. So we have a lot of biomedical data and biomaterials from patients with ME/CFS. We found people who developed ME/CFS over the course of those ten years, so we also have biomaterials and data from before they became ill. We will compare all those patients in all kinds of ways with healthy Lifelines participants and with participants with other chronic diseases such as MS or Post-COVID. And we can also look back: What biomedical changes do we see in people who have developed ME/CFS? Hopefully that will provide starting points for better diagnosis and treatment.
Judith Rosmalen, Main Researcher UMCG
In addition, the research consortium will also collect biomaterials and data e.g. stool samples will be collected to look at a person’s intestinal bacteria in order to gain more clarity about the role that the microbiome plays. The effect of intensive physical and mental exertion on metabolism and processes in the brain will also be examined for some of the participants.
Also, as part of the ME/CFS Lines Consortium, Erasmus Medical Centre under Drs Wim Dik and Marjan, has been awarded 470,900 euros. The project ‘Immune signatures in ME/CFS’ will utilise the Dutch ‘Lifelines’ health database (as part of the already announced UMC Groningen initiative) but looks to expand those measurements with proteomics, among other things – these are measurements and analyses of all kinds of human proteins. Ultimately, they wish to discover the interplay between proteins and genetics which would lead to an understanding of the biological mechanisms at play in ME/CFS and hence allow targeted drug research to take place.
