News from The Netherlands

[rvallee]

I really can't believe they're saying out loud "we cannot possibly research these drugs because if they work they will be too expensive".

Maybe we need some research on how much government spending currently goes to care for ME/CFS patients (endless doctor visits, tests, disability payments, home care, no tax income etc.). Because I'm pretty sure those costs are way way higher.

Then why don't they drop all coverage for drugs that are still patented??

Also, it's not as if this is not a major area of economics. Externalities are a well-known problem, one of the biggest economic problems of our times, and it's precisely all about how hiding the bill doesn't remove the cost. Economists study these things a lot. Governments base a lot of decisions on this. This is entirely a choice. The choice of paying more for worse outcomes, seemingly on nothing more than being unable to admit having made a catastrophic series of mistakes while being perfectly willing to throw millions of people in the trash in the process.

Externality - Wikipedia

en.wikipedia.org

 

[N_Dina]

Also, it's not as if this is not a major area of economics. Externalities are a well-known problem, one of the biggest economic problems of our times, and it's precisely all about how hiding the bill doesn't remove the cost. Economists study these things a lot. Governments base a lot of decisions on this. This is entirely a choice. The choice of paying more for worse outcomes, seemingly on nothing more than being unable to admit having made a catastrophic series of mistakes while being perfectly willing to throw millions of people in the trash in the process.

Externality - Wikipedia

en.wikipedia.org

Policy makers are not that rational in real life though, act within the election cycle and are eager to put responsibility on their successors.

 

[V.R.T.]

I really can't believe they're saying out loud "we cannot possibly research these drugs because if they work they will be too expensive".

It's absolutely outrageous but perhaps useful as an example of just how illogical the neglect of MECFS is.

 

[OrganicChilli]

Is there any way to appeal the decision? I'm not familiar with advocacy groups in NL. Do we know which drugs they proposed to investigate and if they are trying to get private funding?

 

[V.R.T.]

Is there any way to appeal the decision? I'm not familiar with advocacy groups in NL. Do we know which drugs they proposed to investigate and if they are trying to get private funding?

The example Den Dunnen gave was daratumumab

 

[OrganicChilli]

The example Den Dunnen gave was daratumumab

My bad, I should have clarified that I meant other than daratumumab.

 

[Utsikt]

Someone should ask them if they include the same stipulation for cancer research..

 

[V.R.T.]

Someone should ask them if they include the same stipulation for cancer research..

The unsaid thing in all this - we are not as deserving as those with 'proper' diseases

Also I wonder if there was any ranty person esque lobbing here. It's such a bizarre decision by any logical measure but very typical of MECFS neglect.

 

[Grigor]

A prominent professor Marcel Levi, was also in disagreement with the decision by ZonMw. He said the following in a podcast:

“Another small article from de Volkskrant. It says that a research program is being launched into medications for chronic fatigue syndrome. Long Covid also falls under that, for example. A completely new program costing a few million. Only, there is some controversy, because only drugs that no longer have a patent may be researched. So those are of course much cheaper than drugs that are still patented. And the reason for that is that those are at least the medications that are quickly available and also affordable.

Well, on the one hand you can understand that, but on the other hand: we don’t say that about cancer, do we? And why do we do say that for post‑infectious or chronic fatigue syndrome, conditions that people can also suffer from very severely? We also don’t say: yes, we’re not going to research it because it’s too expensive. For cancer, the sky is the limit. So yes, I actually find it hard to justify. Xander Koolman, a health economist, also says: you know, as a government you can make agreements with manufacturers that if we find something, we want this drug to be brought to market at a lower price for this indication. So, well, a discussion.

Do you have the feeling that long Covid and M.E., those kinds of illnesses, still aren’t taken seriously?

Well, that’s what this suggests a little bit. On the one hand it’s really great that a research program is being set up, but on the other hand: three and a half million is… I don’t want to be picky, but that’s also not a huge amount of money. So they still remain a bit of the stepchildren of healthcare…

Yes.”

Podcast: https://www.npoklassiek.nl/fragment...261cba7a44/2026-03-03-ontbijtgast-marcel-levi

Volkskrant article: https://archive.is/2026.03.13-07151...t-onder-zocht-omdat-ze-te-duur-zijn~ba9d121e/

 

[Alinda]

Is there any way to appeal the decision? I'm not familiar with advocacy groups in NL. Do we know which drugs they proposed to investigate and if they are trying to get private funding?

From what I heard is that advocacy groups have tried their hardest to stop this. I feel like more should be possible but I don't know.

 

[Utsikt]

They are dooming pwME/CFS to stay 20-30 years behind the medical development.

And it’s not like old and cheap drugs haven’t been tried or considered. So they are asking pwME/CFS to keep doing the same thing that hasn’t worked so far, instead of trying new things.

This is a textbook case of discrimination.

 

[Grigor]

ZonMw wrote this response on Linkedin:

ZonMw currently has an open grant round for research into existing medications that may also be promising for patients with ME/CFS. This is a chronic illness that affects multiple systems in the body at the same time. De Volkskrant published an article on this topic on March 13. Below is an explanation from ZonMw.

In short: this round is aimed at encouraging research into affordable and available medication for ME/CFS patients in the Netherlands. With this round, ZonMw is promoting research into existing non‑patented medicines, because these offer the greatest chance of rapid availability for patients and affordability.

For ME/CFS patients, it is extremely important that medication becomes available in the short term for this severe illness. At the moment, there is no effective treatment available for ME/CFS patients.

From a scientific perspective, it is relevant to include all medications that may be effective in this research. At the same time, it is also important that medications are promising in terms of rapid availability for patients and affordability. That chance is greatest with non‑patented medicines. That is why this grant round focuses on stimulating research into drugs that are scientifically promising and likely to be quickly accessible.

In addition, ZonMw works with public funds. This means that the results of research must benefit society as a whole. They also must not lead to exclusive market advantages for a single party. It is also important that knowledge and results, especially for a relatively unknown illness like ME/CFS, are made widely available.

It is not the case that patented medicines are by definition excluded from a ZonMw program. For each grant round, a choice is made based on the goal of that round, with the above arguments carefully weighed. This means that the grant conditions may differ between rounds.

Within the research program, the involvement of people with lived experience plays an important role. They participate as committee members, advisory group members, or reviewers in the program. People with lived experience are also involved in the research projects and in shaping this grant round.

The ME/CFS research program runs until 2031, with a total budget of 32.9 million euros. Several more grant rounds for biomedical and clinical research will follow.

For more information about the program, see:
https://lnkd.in/emtmb3Xv

ZonMw heeft momenteel een subsidieronde open staan voor onderzoek naar bestaande medicijnen, die mogelijk ook kansrijk zijn voor patiënten met ME/CVS. Dat is een chronische ziekte die meerdere… | ZonMw | 22 comments

ZonMw heeft momenteel een subsidieronde open staan voor onderzoek naar bestaande medicijnen, die mogelijk ook kansrijk zijn voor patiënten met ME/CVS. Dat is een chronische ziekte die meerdere systemen in het lichaam tegelijk aantast. De Volkskrant publiceerde 13 maart een artikel over dit...

www.linkedin.com

 

[Jonathan Edwards]

This sort of thing does not stop people like Fluge and Mella pushing things forward. It is disappointing but maybe unsurprising.

 

[forestglip]

It sounds like they're overly optimistic, where they're sure they'll find something that works, so they want to be sure what they find is cheap. I think they're limiting their options unnecessarily.

The priority, in my opinion, should be identifying real, replicable findings. A trial in ME/CFS is as much, or maybe more, about even just finding a clue about what's going on as it is in finding a treatment that works.

The benefit of identifying that a drug works would be enormous, even if it's completely unaffordable. Other treatments that target the same pathway that are cheaper can then be trialled.

I don't think this is a well thought out plan.

 

[Utsikt]

For ME/CFS patients, it is extremely important that medication becomes available in the short term for this severe illness.

That is not the most important priority. The most important priority is to figure out anything about how ME/CFS works.

From a scientific perspective, it is relevant to include all medications that may be effective in this research. At the same time, it is also important that medications are promising in terms of rapid availability for patients and affordability. That chance is greatest with non‑patented medicines. That is why this grant round focuses on stimulating research into drugs that are scientifically promising and likely to be quickly accessible.

I don’t get this argument.

If we had 5 treatments already, I could see why you’d restricting funding to only off-patent drugs to stimulate research into less expensive (and profitable for the seller) drugs. But that’s not the case here.

In addition, ZonMw works with public funds. This means that the results of research must benefit society as a whole.

Surely it is not ZonMw’s mandate to decide which treatments to prioritise? Isn’t that done by the government on a case by case basis? And doesn’t the government already pay for plenty of patented drugs - it’s not like all of them cost millions per patient. Some might still be profitable from a societal perspective.

And are they saying that they’d never fund research into cancer treatments that can be patented because those might not be available at once? Surely curing lethal cancer is time critical. If we follow their logic, we should prioritise looking at off-patent treatments for those. Which is exactly the opposite of what cancer research is currently doing.

They also must not lead to exclusive market advantages for a single party.

Why not? Are they suddenly trying to go up against capitalism as a system? Have ZonMw never funded research into patented drugs before?

It is also important that knowledge and results, especially for a relatively unknown illness like ME/CFS, are made widely available.

This is completely unrelated to the question at hand. Knowledge about the efficacy of patented drugs will reach the public in the same timeframe as off-patent drugs. Perhaps even sooner due to the first to market advantage.

 

[EndME]

Yes, as @Utsikt mentions these arguments are completely inconsistent nonsense as they would apply equally to other conditions which of course they do not. Not a very smart response from ZonMW.

 

[Turtle]

ZonMW writes: a relatively unknown illness like ME/CFS.
We, the patients with ME/CFS, have been unknown to ZonMW?
That's their defense?
Buried by BPS into oblivion.

ZonMW owes us patients research into all possible cures.

In two weeks I have had ME/CFS for 35 years and in ZonMW's 25 years of existance they haven't come acoss ME/CFS? Shame on you!!
This is one of those times I'm ashamed to be Dutch instaed of those who should owe up for their gross negligence.

edit; last sentence added

 

[rvallee]

At the moment, there is no effective treatment available for ME/CFS patients.

Accidentally telling the truth? In this economy?!

From a scientific perspective, it is relevant to include all medications that may be effective in this research. At the same time, it is also important that medications are promising in terms of rapid availability for patients and affordability. That chance is greatest with non‑patented medicines. That is why this grant round focuses on stimulating research into drugs that are scientifically promising and likely to be quickly accessible.

This argument is asinine. Pharmaceutical patents grant a total monopoly but are short. If we find a drug that works but is very expensive, it will be far less expensive in a few years time, and with the proper motivation it would spur research into creating analogues that work just as well but skirt the patent. It might also be that a drug with a limited market would suddenly find itself with a huge, open-ended market, and that would change the entire economic calculation for every party involved, including the patent holder.

If any of this were true, this limitation would be universal. It obviously isn't. They don't want to find treatments, but are too cowardly to say it. It's just always open season when it comes to discriminating against us and making our lives worse.

 

[forestglip]

Within the research program, the involvement of people with lived experience plays an important role. They participate as committee members, advisory group members, or reviewers in the program. People with lived experience are also involved in the research projects and in shaping this grant round.

It sounds like they're implying that this decision was somewhat based on recommendations of people with ME/CFS. I can imagine that some people who are sick might think that this is the best option to feel better faster, and ZonMw might have felt pressure to take on this idea.

 

[Grigor]

It sounds like they're implying that this decision was somewhat based on recommendations of people with ME/CFS.

I'm not sure they were involved in this particular decision. I think they're referring to involvement in the research program in general? Not sure though, but it seems that Jeroen den Dunnen was also surprised by the decision of ZonMw as well. So I would be surprised if patients were involved and knew about it before Jeroen.