News from The Netherlands

ME/CFS Skeptic

ME/CFS Skeptic

Senior Member (Voting Rights)
I thought it might be useful to have a thread on ME/CFS news for the Netherlands, similar to the threads we have on Scandinavian countries. If there's some really important news we could make a separate thread for it and link to it in this general thread that keeps an overview of all ME/CFS news from the Netherlands.

Steering group has laid out main principles of for the research agenda on ME/CFS
Most of you will remember the 2018 report by the Dutch Health Council. It recognized ME/CFS as a serious illness and advised to increase funding of biomedical research into the illness. A steering group has been formed to make this possible. It includes several patient representatives.

After consulting several experts, the steering group now has determined the main principles for the research agenda on ME/CFS. It will focus on immunology, neurology, cardiology, and cell biology.

The steering group wants to develop a thoroughly screened Dutch cohort of ME/CFS patients that will be tested and follow up on for several years. Standardizing data on this cohort will facilitate research into the cause, diagnostic, and treatment of ME/CFS.

More info on the website of The Dutch patient organization Steungroep ME en Arbeidsongeschiktheid: https://www.steungroep.nl/nieuws/ni...ofdlijnen-onderzoeksagenda-me-cvs-vastgesteld
 
The Netherlands is set to make a huge investment in biomedical research

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.​

Dutch-investment.jpg​

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..

 
Well, I’ve lived long enough to see something encouraging happen.
O/T: From the little I’ve seen of the Dutch, they’re generally fit, healthy and rather attractive. If that’s not true, it’s a pleasant illusion.
Having the success in making your own health probably makes it harder to recognize a disease like ours.
 
ZonMW grant prof. Hans Knoop – the sequel
On 7 September last, 3 Dutch patient organisations protested at ZonMw against the awarding of a research subsidy to Prof. Hans Knoop. All three organizations are represented on the ME/CFS committee which is preparing a biomedical ME-research agenda.

Transverse to this is the treatment of ME with psychogenic interventions such as CBT and GET, as propagated by Prof. Knoop. Given the fact that during a hearing with ZonMw on 22nd October no satisfactory answers were provided, the 3 organizations decided upon a FOI-request to obtain all missing information.
Click to expand...
https://mecentraal.wordpress.com/2020/11/01/zonmw-grant-prof-hans-knoop-the-sequel/
 
Dutch conference on ME/CFS
19 november 14:15 - 18:00, Online

Today, little is known about the causes, diagnosis and treatment of ME/CFS. Therefore ZonMw is working on a Dutch research agenda on ME/CFS, together with scientists, practitioners and patients. During a national conference on ME/CFS on November 19th, we will discuss the key elements of the concept research agenda with Dutch stakeholders. We will also provide an update on recent developments in ME/CFS-research.

The conference will mainly be in Dutch. However, key notes on the current state of research on ME/CFS by scientists from abroad will be English spoken. Anthony Komaroff will propose a unifying theory on ME/CVS pulling in disparate research findings, while Michael Van Elzakker presents evidence on neurological and brain aberrations. Jennifer Frankovich will talk about her clinical practice and how to make adjustments in your clinical research design to allow for enrollment of this type of patients. And Jonas Bergquist will tell you more about the biomolecular aspects of ME/CFS.

There are no subtitles during the live event. However, subtitled recordings of the full conference will be available in the near future on the ZonMw website.

https://www.zonmw.nl/nl/actueel/agenda/detail/item/dutch-conference-on-mecfs/
 
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