ME/CFS Research Programme

From citizens’ initiative to research agenda and programme

In October 2013 an ME patients’ interest group, Groep ME-DenHaag, submitted a citizens’ initiative called ‘Erken ME’ (‘Recognise ME’) (only available in Dutch) to the Dutch parliament. The signatories to the petition (only available in Dutch) called for more biomedical research into the causes of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).
In response to the petition, the Health Council of the Netherlands was asked to draw up an advisory report on ME/CFS. This report, which was published in 2018, recommended that a research agenda be drafted setting out what kind of scientific research on ME/CFS should be prioritised. ZonMw was asked to oversee the drafting of the agenda, working with patients, scientists and medical practitioners. The research agenda was presented to the Minister for Medical Care and Sport in December 2020. The minister asked ZonMw to launch a ten-year research programme for biomedical research on ME/CFS. The programme officially launched in December 2021. If you would like to know more about the research agenda, simply download the programme document under ‘more information’ over on the right. 

The aim is to improve the health and quality of life of ME/CFS patients and their position in society. There are three key goals in the programme: 

1. To develop biomedical knowledge of the onset, diagnosis and treatment of ME/CF.
2. To ensure that this knowledge is used in medical practice.
3. To encourage collaboration between knowledge institutes, patients and practitioners.

Working with specialists at national and international level 

For the research to be successful, there has to be collaboration, both with patients and at other levels:
•    Collaboration between various research disciplines concerned with ME/CFS
•    International collaboration
•    Collaboration between different professional groups: researchers, medical practitioners, policymakers and educators

To encourage this collaboration, ZonMw funds 2 partnerships, also known as consortia. These consortia — ME/CFS Lines and The Netherlands ME/CFS Cohort and Biobank Consortium (NMCB) — coordinate their methods and working practices. This also allows them to align with other international ME/CFS studies. This makes it easier to exchange results and data, which means that results can be achieved more quickly. Various sub-studies are being carried out within the consortia. These research projects last four years and each focus on a specific issue. 

Patient participation: using the knowledge and experience of patients in research

Another important aspect of the research programme is patient participation. Working with experts by experience  ensures that research and practice are better aligned. Patient participation can therefore help to advance healthcare research. 
Experts by experience play a role as committee members, focus group members, or expert advisors for grant applications. The sounding board group contributes ideas and advice based on their expertise regarding the implementation of the programme. Experts by experience assess grant applications as external experts. And the experts by experience on the committee decide, together with the other members, which proposals received will or will not receive funding.
Read more about working with patients in the programme document. 
 

FAIR data: making research data interoperable and reusable

ZonMw’s policy focuses on the FAIR data principle. FAIR stands for findable, accessible, interoperable and reusable. In terms of the ME/CFS research programme this applies specifically to making the data and bodily material used and produced in studies findable, accessible, interoperable and reusable. This will allow research data to be used to better effect, and provide more scope for innovation.