News from The Netherlands
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They’re mixing up two different things — govt reimbursement and availability. Approved medications which are on patent are available — the government can agree to reimburse them. If they cared at all about ME/CFS patients.
V.R.T.
Senior Member (Voting Rights)
Which is really disturbing because it means that they realise that MECFS is not psychosomatic - because otherwise none of the possible treatments would work - but still stigmatise us and do not want to help us.
I can't help but think something odd has gone on behind the scenes here.
I'm not quite sure. I would not be surprised if they still think that it is psychosomatic (as the majority of people do), but for political reasons don't say this anymore. It would be interesting to know how this policy of only trialling medications that have run out of patent came to place but it's possible that it is one of these abstruse political compromises one often sees in life that make no logical sense.
V.R.T.
Senior Member (Voting Rights)
Yeah this is probably it. But their public position suggests a torturous mental contortionism on the part of funders.
Even if they think its psychosomatic, surely it doesnt matter what drugs are researched because none of them will ever work better than placebo! So there is no need to make this stipulation. This decision makes no sense from any position.
It certainly does.
I guess it might matter in terms of what drugs are more likely to cause harm and at the same time are more likely to be trialled, for example harsher drugs out of patent might be less likely to be trialled because one would have expected circumstantial evidence by now. In short, I find it possible that they don't want things like Daratumumab (where it doesn't matter too much because it is almost out of patent and biosimilars already exist) or newer biologics trialled, but can still live with some trials of things we anyways don't think are likely to work usefully or stuff like SSRIs (which are all out of patent).
At least that is my current interpretation, which needn't be correct. It needn't make logical sense, just politically. If you'd ask Knoop whether he'd prefer a LDN trial or a Daratumumab trial, if I'd have to venture an uneducated guess I would presume he'd opt for a LDN trial.
Of course it doesn't really make sense that things are different for Long-Covid, but things often don't make much sense.
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rvallee
Senior Member (Voting Rights)
Plus if anything actually worked, a lot of patients would pay the drugs themselves, unless the price is so excessive only multimillionaires can afford it. And even then. This is literally what the AIDS buyers' clubs were all about! There is precedent for this! And it's not the distant past, there are still a lot of people alive who saw this happen, it was a major event. The patient community would do most of the heavy lifting anyway, as the institutions of medicine are slow and indifferent.
But this is what the hyper-local fixation in everything health care leads to, they literally don't even consider for a second that this is a problem that affects tens of millions all over the world, and that things can happen elsewhere that can have indirect effects on what would unfold if an effective treatment were found. This is a big world out there, with lots of people and things happening, but they never seem to think in those terms. They think locally and refuse to act.
I remain absolutely baffled at the near complete absence of international collaboration in medical research, especially where it's the most needed. Every single expert discipline where basic research is involved does that, precisely to benefit from a larger pool of talent and to leverage economies of scale.
But in health care everything is thought of in terms of what can be done at this one local clinic here and now for a dozen patients, with zero conception of a broader universe even existing. I don't get it. It's like a system built to perfection at being inefficient and wasteful.
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Tree
Senior Member (Voting Rights)
Even if a government says, that is very expensive. Why is it always a short-term one-sided part of the coin.
If a government chooses to look at it as a business model (which I do not agree with) than they also should include part 2; what are the costs of not treating; so leaving tens of thousands of people ill long term.
That is the dishonesty of this presentation.
Jonathan Edwards
Senior Member (Voting Rights)
You can bet your shirt on it.
The whole research project was forced upon ZonMW, by a citizens's initiative through parliament (signatures).
Patients are included, but patient representatives are hardly listened to historically.
The list of medications to be used in research was based on AI using substances needed and already present in existing pills. Not directly nefarious.
I could not find who researched those substances, maybe first round grants? 28,5 million available over10 years, starting with 100.000 projects.
All doctors were educated with ME/CFS is a "between the ears" thing.
So all researchers had to have a mind reset first. Only universities get grants. Students learning on the job, supervisors not knowing much either.
Don't expect much soon.
Be amazed if it hadn't.
Exactly. Why are the vastly greater opportunity costs not being factored in, or even mentioned?
Tree
Senior Member (Voting Rights)
The minister of Social Affairs and Employment (SZW) has responded to questions of MP Jimmy Dijk (SP) regarding people who are unfit for work (WIA)
Link to letter (in Dutch): https://open.overheid.nl/documenten/730cf012-b359-4615-8a77-23c38d1f344a/file
Translated segments
Sent in 12th February 2026
Questions from Jimmy Dijk to the minister of Social Affairs and Employment regarding the article in Trouw : Almost half a million of people who are unable to work are left between two stools.
7. In what way will the new cabinet’s policy regarding disability benefits differ from the old cabinet?
Answer question 7
The cabinet is working on a fundamental reform of the system for sickness and disability benefits.
The goal is to guide people to work as well and quickly as possible.
Reports have been published that emphasize the need and urgency for a reform of the system for sickness and disability, such as the OCTAS report and the IBO report, ‘working on the WIA’.
Following these reports the cabinet will invest in (amongst others);
- the task rearrangement at the UWV
- the improvement of the process of reassessment
- the IVA (sustainably unfit benefit) will disappear for new cases.
These measures will be necessary to make the WIA function again.
Link to letter (in Dutch): https://open.overheid.nl/documenten/730cf012-b359-4615-8a77-23c38d1f344a/file
Translated segments
Sent in 12th February 2026
Questions from Jimmy Dijk to the minister of Social Affairs and Employment regarding the article in Trouw : Almost half a million of people who are unable to work are left between two stools.
7. In what way will the new cabinet’s policy regarding disability benefits differ from the old cabinet?
Answer question 7
The cabinet is working on a fundamental reform of the system for sickness and disability benefits.
The goal is to guide people to work as well and quickly as possible.
Reports have been published that emphasize the need and urgency for a reform of the system for sickness and disability, such as the OCTAS report and the IBO report, ‘working on the WIA’.
Following these reports the cabinet will invest in (amongst others);
- the task rearrangement at the UWV
- the improvement of the process of reassessment
- the IVA (sustainably unfit benefit) will disappear for new cases.
These measures will be necessary to make the WIA function again.
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WIA and IVA are about to turn into the same nightmare as WAJONG is in.
Tree
Senior Member (Voting Rights)
A lot of people with ME are not assessed properly (not taken seriously). This means they are assessed fit for 20 hours of work. Now this leaves them with a lower benefit.
With the new plans they could be forced to work (which they can’t).
This will make a lot of people very stressed.
Tree
Senior Member (Voting Rights)
The WAJONG seems terrible . Feel for the people who are dependent on it.
Just got denied a few days ago, they say I can work for 2 hours a day and need to do more CBT and GET - thus I am denied and will be forced to either stay in school for as long as possible or be fully dependent on family.
I cannot comprehend how stupid the people that came up with these laws must have been.
Tree
Senior Member (Voting Rights)
So sorry to hear this
.How can this still happen when the Gezondheidsraad report has deemed GET damaging?
As far as I understand it they cannot refuse IVA based on GET, but they can against WAJONG. But it's unclear, and doesn't really matter as I don't meet the other criteria anyway.So sorry to hear this
How can this still happen when the Gezondheidsraad report has deemed GET damaging?
Tree
Senior Member (Voting Rights)
Did you see this info? You can ask for a reassessment if you were denied for not doing GET of CBT.
https://www.uwv.nl/nl/arts/herbeoordeling-me-cvs
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