ME/CFS Research Programme

The ME/CFS research programme funds biomedical research on the causes, diagnosis and treatment of ME/CFS. The aim is to improve the health and quality of life of ME/CFS patients and their position in society.

What is ME/CFS?

ME/CFS stands for myalgic encephalomyelitis/chronic fatigue syndrome. It is a severe chronic illness for which there is no effective treatment as yet. People with this illness suffer pain, sensitivity to light and noise, concentration and memory problems and severe fatigue. Exertion can exacerbate the symptoms. 

Background

In October 2013 an ME patients’ interest group, Groep ME-DenHaag, submitted a citizens’ initiative called ‘Erken ME’ (‘Recognise ME’) to the Dutch parliament. The signatories to the petition called for more biomedical research into the causes of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

From citizens’ initiative to research agenda and programme

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. 

    Goals

    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/CFS
    2. To ensure that this knowledge is used in medical practice 
    3. To encourage collaboration between knowledge institutes, patients and practitioners

    Collaboration

    National and international collaboration, patient participation and FAIR

    The research programme focuses on a number of topics, all of which will help achieve the three goals set out above. More information on these topics and subjects can be found in the programme document.

    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

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

    Another important aspect of the research programme is patient participation. Working with patients ensures that research and practice are better aligned. Patient participation can therefore help to advance healthcare research. 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. 

    Programme committee

    The programme committee will be reconfigured for each individual call.

    Chair

    • S. de Gouw (M.D.,PhD)
      Programme chairman Infectious disease, Q fever en Lyme disease. Chairman umbrella committee COVID-19 Programme. Director at the Gemeenschappelijke Gezondheidsdienst (GGD) Hollands-Midden and the Regionale Dienst Openbare Gezondheidszorg (RDOG) Hollands Midden.

    Members

    • Dr. N. (Nettie) Blankenstein
      Senior researcher and head of general practice training at UMC Amsterdam, VU medical centre 
    • Prof. dr. P.M.M. (Patrick) Bossuyt
      Professor of clinical epidemiology at UMC Amsterdam, based at AMC
    • Prof. dr. J.W. (Jan Willem) Cohen Tervaert
      Professor of immunology, Maastricht University & professor of rheumatology, University of Alberta, Edmonton, Canada
    • Prof. dr. H.A. (Hemmo) Drexhage
      Emeritus professor of medical immunology, Erasmus MC
    • Dr. mr. M.M. (Marleen) Eijkholt
      Senior lecturer in clinical ethics, LUMC
    • Dr. P. (Peggy) Manders
      Head of Biobanking, Radboudumc
    • Prof. dr. A.A.M. (Ad) Masclee
      Professor of gastroenterology and hepatology, Maastricht UMC
    • Prof. dr. H.V. (Hans) Westerhoff
      Emeritus professor of synthetic systems biology, University of Amsterdam; molecular cell physiology, Vrije Universiteit; and systems biology, University of Manchester

    For each call, two members of the focus group join the programme committee. In the first call, they are:

    • Drs. Y. (Ynske) Jansen
      Representing the ME and Incapacity for Work Support Group
    • Drs. S.M. (Saskia) Lloyd-de Wit
      Representing the ME/CFS Foundation

    Observer

    • Drs A.M. (Hanneke) Heeres
      Ministry of Health, Welfare and Sport

     

    Chair

    • S. de Gouw (M.D.,PhD)
      Programme chairman Infectious disease, Q fever en Lyme disease. Chairman umbrella committee COVID-19 Programme. Director at the Gemeenschappelijke Gezondheidsdienst (GGD) Hollands-Midden and the Regionale Dienst Openbare Gezondheidszorg (RDOG) Hollands Midden.

    Members

    • Drs. Y. (Ynske) Jansen
      Representing the ME and Incapacity for Work Support Group
    • Drs. S.M. (Saskia) Lloyd-de Wit
      Representing ME/CFS Nederland
    • Dr. Ir. I. (Inge) van Putten
      Representing Groep ME-DenHaag
    • Vacancy (ZonMw is consulting with the ME/CFS Association on a suitable candidate for this vacancy)

    Features

    Status:
    In progress
    Budget:
    € 28.500.000
    Duration: 24%
    Duration: 24 %

    Contact

    Minne Prüst

    Programmamanager
    mecvs [at] zonmw.nl