Jeroen den DunnenJeroen den Dunnen
• 2ndVerified • 2nd
Head of Department of CIMM at Amsterdam UMC (location AMC)Head of Department of CIMM at Amsterdam UMC (location AMC)
3d • 3 days ago • Visible to anyone on or off LinkedIn
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With considerable disappointment, our team has decided not to submit a proposal for a clinical trial in ME/CFS in the upcoming ZonMw call. I would like to briefly explain why.
For those who may not be familiar with the background: after many years of advocacy by ME/CFS patients and patient representatives, the Dutch government initiated the ME/CFS Research Program in 2021, coordinated by ZonMw. Initially, this program focused on preclinical research. Following strong requests from both patients and scientists, ZonMw has now also opened a clinical funding round in 2026, aimed at testing promising drugs through repurposing.
In preparation for this call, clinicians, scientists, and patients worked closely together over the past year to identify the most promising candidate drugs for ME/CFS. This collaborative effort resulted in an extensive overview of potential treatments compiled by Technopolis, which accompanies the call as a source of inspiration.
However, when the call was published on 30 December 2025, it came as a surprise to many in the community that almost none of the “most promising candidate drugs” listed in this report are eligible for testing.
The reason is that the call only allows drugs without an active patent in the Netherlands. According to ZonMw, this requirement was included to help ensure that future healthcare costs remain manageable. At the same time, it is notable that patented drugs are allowed in our ongoing clinical trial for Long COVID.
For our team, this restriction means that the drugs we had been preparing to investigate for ME/CFS (many targeting autoimmune mechanisms, e.g. daratumumab) are not eligible under the current call.
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Disappointing information about ME/CFS treatment trial fund in the Netherlands
#CVS #MECVS #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome
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