A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a €25m biomedical research programme. Patients are playing a central role in the process.
The Dutch national health research agency ZonMw is proposing spending around €25m (£23m, $29m) on exclusively biomedical research over the next ten years. The Dutch government looks set to accept the proposal, once the final version is submitted, probably early next year.
The Netherlands is a small country (population 17 million), making this a very substantial investment per head. Allowing for the much larger US population, it would be like the NIH committing $500m over ten years.
Patients have played a central role in making this happen and drawing up the plans — and will be an integral part of the new research programme.
It all began in 2011 with a petition started by ME patient and advocate Mirande de Rijke. The petition called on the Dutch parliament to really tackle ME, with several specific demands, including basing diagnosis on the International Consensus Criteria (ICC), and treating ME as a biomedical illness. Two years later she had 56,000 signatures, more than the 40,000 needed to trigger a serious response from Parliament.
Parliament’s response eventually led to a report from the Health Council of the Netherlands. That led in turn to the Minister of Health commissioning ZonMw, Netherland’s health research organisation, to develop a long-term, substantial ME/CFS research programme.
ZonMw’s work has been delayed by COVID-19, but it recently wrote to the Minister of Health with its outline proposal, which should be finalised and agreed by early next year.
The proposal is to spend €20–29.5m on a ten-year biomedical ME/CFS programme.
Patients get a big say
Since Mirande de Rijke started the process, people with ME have continued to play an important role. They were on the Health Council report team and four patient representatives are working alongside four researchers on the ZonMw proposals. As well as helping to draw up the research agenda, people with ME will help set up and run the grant award system. And then they will have a key role in the research programme itself.
A huge and very good programme
Up till now, the Netherlands has only been prominent in psychosocial research. The ZonMw steering committee recognises the need to catch up on biomedical research and consulted with international scientists via a survey. ZonMw wants Dutch researchers to tackle fundamental biological areas that have already been highlighted as important by international work:
1. The immune system, particularly immune activation, including the interaction with the microbiome.
2. The nervous system, including the brain.
3. Cell biology, including cell energy metabolism
I am particularly impressed by two other measures they are proposing.
First, ZonMw has earmarked €2.5m to set up a large cohort of patients diagnosed by expert ME/CFS clinicians. After consulting with international biomedical scientists, ZonMw have decided to include people who meet either of the International Consensus Criteria or the Canadian Consensus Criteria.
For each patient there will be biological samples – e.g. blood samples – and data, e.g. brain scans, results of tests on heart function, and lists of symptoms. The cohort should become a valuable resource for researchers.
Second, ZonMw has made epidemiological research a priority. Epidemiology – made almost famous by Covid-19 – is the study of disease in a population, looking at who gets an illness, for how long and why. We still don’t have really good data on how common ME/CFS is, or even the chances of recovery in the short or long term.
The final priority area is clinical research, though most of that is likely to come later, building on the fruits of the biomedical research.
These are the priority areas for the first four years and the plan is to be flexible and review the programme in the light of results from this work and from research elsewhere in the world.
ZonMw will finalise its recommendations for funding and the research agenda by early next year. Following approval, the plan is to set up a research grant programme, invite applications and award an initial round of grants by the end of 2021.
To make this a success, ZonMw wants to engage the Dutch research community. It will consult the community about the research agenda at workshops in the autumn. In November, it will discuss the draft agenda with a wide range of Dutch researchers at a programme day where international speakers will present relevant research and patient representatives will play an active role. ZonMw’s aim is to highlight the opportunities to make progress in ME/CFS research and the funding available.
In future, ZonMw plans more work to bring Dutch researchers together with each other and with international partners, creating a network of scientists working together to solve ME/CFS.
The high level of funding, the large cohort, the strength of the research agenda and the plans to build a strong research community will all help to establish the Netherlands as a global partner in biomedical ME/CFS.
In the UK, we recently saw government research funders back DecodeME, the world’s biggest ME/CFS study. The £3.2 million funding is welcome, but it is only a start.
The Netherlands is showing what it takes to set up a comprehensive research programme designed to tackle ME/CFS and the suffering it causes. We need the rest of Europe to follow its lead.Follow @sjmnotes
My thanks to Rob Wijbenga for his help with this blog, which is based on several of his posts.
Image credits: Dutch flag and pile of coins, (c) Can Stock Photo /Paul_Cowan & shmeljov;