About this programme

In December 2021, the 10-year research programme ME/CFS started. Projects within this programme focus on biomedical research into the cause, diagnosis and treatment of the chronic disease ME/CFS.

The programme encourages the (continued) development, use and spread of knowledge about ME/CFS. The aim is to improve the health, quality of life and social position of ME/CFS patients. The programme has three key objectives:

  1. Developing biomedical knowledge about the aetiology, diagnosis and treatment of ME/CFS;
  2. Ensuring that this knowledge is used in practice;
  3. Encouraging collaboration between knowledge institutes, patients and practice.

What is ME/CFS

ME/CFS is the acronym for myalgic encephalitis / chronic fatigue syndrome. It is a severe, chronic illness for which there is no effective treatment yet. People with the disease experience symptoms such as pain, sensitivity to light and sound, concentration and memory problems and severe fatigue. Exertion can exacerbate the symptoms. Further research is needed into the causes, diagnosis and treatment of the disease in order to better help those people who suffer from it. ZonMw therefore started a 10-year biomedical research programme in mid-December 2021. In this programme, we will fund research into the disease.

From citizen’s initiative to research programme

In October 2013, the Groep ME-DenHaag presented the Dutch House of Representatives with the citizen’s initiative ‘Recognise ME’. This stated that the Netherlands was not doing enough to improve the treatment for ME. More than 56,000 people signed this petition. In the petition, the signatories called for more biomedical research into the causes of the disease myalgic encephalomyelitis (ME).

In response to the citizen’s initiative, the Health Council of the Netherlands was asked to draft an advisory report. In its advisory report into ME/CFS, the Health Council of the Netherlands described the state of current scientific research into ME/CFS. The report was published on 19 March 2018.

In response to this report, the first meetings about drawing up a research agenda ME/CFS were held in 2019. The research agenda was presented to the Minister of Medical Care and Sport in late December 2020. She sent the research agenda to the Dutch House of Representatives (only available in Dutch). In her letter to parliament, she stated that she wanted to commission ZonMw to develop a research programme aimed at biomedical research into ME/CFS.

The first funding round opened in mid-December 2021. It is expected that the first projects will be awarded funding in mid-2022  and start no later than the end of 2022. The total programme has a duration of 10 years, and the budget is 28.5 million euros.

Important themes within the programme

The research programme focuses on several themes that contribute to realising the three objectives stated above.

Collaboration with specialists at the national and international levels

Collaboration is crucial for the success of the research. Not just with patients, but also at other levels:

  • Collaboration between different research disciplines that are involved in ME/CFS;
  • International collaboration;
  • Collaboration between the various professional groups: researchers, therapists, policymakers and education.

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

Another important theme in the research programme is patient participation. Collaboration with patients ensures a better connection between science and practice. Patient participation therefore strengthens research within healthcare.

FAIR data: making research data findable and accessible

The policy of ZonMw focuses on the FAIR data principle. FAIR is the acronym for Findable, Accessible, Interoperable and Reusable. For the research programme ME/CFS, it specifically concerns applying the FAIR principles to the data and biological materials that are used and produced in the studies. This way, research data can be better utilised and provide more room for innovation.

In the programme text, you can read more about the collaboration with patients. Further information on patient participation and tips on how to tackle this efficiently can be found at zonmw.nl/participatie (only available in Dutch).

Download the programme text

Further details about these themes and subjects are provided in the programme text.

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