News from The Netherlands

SNT Gatchaman said:
Dutch News: 10,000 Long Covid patients on benefits, more may follow







Costing €200 million a year (conservatively) and we're about to trial "anti-allergy medication, anti-depressants and beta blockers which may alleviate symptoms"
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The figures show how invisible the problem is, Alfons Olde Loohuis of post Covid support organisation C-support told the paper. “I know young people who have been bedridden for four years. They don’t feel heard or seen. They have a mysterious disease which doctors can’t cure,” he said.
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'Invisible'. Covered up. Disbelieved. Denied to exist until it explodes so much it can't be fully ignored. Not really the same thing. The people who should be aware of this literally refuse to record it, usually don't recognize it when they see it, and talk nonsense about it most of the time.

And still with the 'mysterious'. It's not a freaking Scooby-Doo villain, folks. After 4.5 years to still be stuck on fake ineptitude is just pathetic. Even more so when the same health care systems that should be solving this have instead chosen to make every possible decision to make it worse. Through sheer ineptitude. So clearly the ineptitude isn't all fake, but it's more of a "pretend to act like a clown long enough and it's pretty much the same thing as acting like a clown".

I mean, look at them, "trialing" things have not shown any effectiveness anywhere, things that have been tried and failed already. What's up with this weird national chauvinism here? Every single health care system, big or small, has to do all the exact same things as all the others. They coordinate nothing, it's maximum redundancy for maximum costs and the worse possible results. These people need more help than we do. They are completely lost and can't even admit it.
 
10.000 is the number of benefits from work related insurance. Full and partial benefits. That's for those who got it. There are many who didn't or had to go to court to fight for it.
As I had to do over ME/CFS. (I won).
Then there is the group that wasn't insured they get nothing or social (community council) benefits.
The real number of LC patients.....???
The real number of ME/CFS patients.....???
I don't even follow the news in my own country anymore, this news came from the other side of the world, thanks @SNT Gatchaman!
 
NKCV is the "Dutch Knowledge Center for Chronic Fatigue", an outpatient clinic of the Amsterdam UMC. It's either headed by, or involves, Hans Knoop. It promises to treat and conduct research for people with "chronic fatigue". Boasts of seeing 550 patients per year.

Their website has a list of testimonials from patients saying all sorts of good things about the clinic. Quite similar in wording and general style to the LP website.

And many of those testimonials are fake. The patients quoted don't even exist. They are represented by pictures taken from stock photos. At least several of them are. Maybe there are real testimonies in there. Probably not.

Unfortunately, I have full confidence that even if this were explicitly not allowed, and it was pointed out to an authority dealing with this, it would make no difference. They would feign some error from some intern, or whatever, make up new ones, or possibly, if they had been smart to begin with, use AI-generated pictures. I'm actually baffled they didn't do that.

It's just par for the course for modern biopsychosocial medicine to just lie and make stuff up, even fake testimonials from fake patients. Which is explicitly illegal in many countries when it comes to customer reviews. I doubt it applies to health care, however, assuming that physicians would never do that. They probably do that a lot. Ah well. The perks of being allowed to both make your own rules, and not bother enforcing them.

Thread with links to the stock photos they were taken from:
https://twitter.com/user/status/1854244763043598737
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Thanks for reporting that @rvallee. I very much hope someone will make a complaint and the veracity of the testimonials will be investigated. Of course, as you say, there will be plenty of wriggle room and any sanction will be trivial, but still.
rvallee said:
It's just par for the course for modern biopsychosocial medicine to just lie and make stuff up, even fake testimonials from fake patients. Which is explicitly illegal in many countries when it comes to customer reviews. I doubt it applies to health care, however, assuming that physicians would never do that.
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The clinic probably believes that anything they do that increases patients faith in their cures is justified, as faith is part of the curative mechanism. And, having a photo of someone offering a testimonial does greatly increase the credibility... until people find out that they are stock photos.
 
News from the Dutch Federation of Medical Specialists (Federatie Medisch Specialisten) on the development of new guidelines for ME/CFS.
That the process had started has been known for quite some time. The names of the members of the guideline committee had already leaked out, but I think this is the first time they have been officially made public.

Names that stand out: Hans Knoop and Jos van der Meer


https://demedischspecialist.nl/nieuwsoverzicht/nieuws/ontwikkeling-richtlijn-mecvs
machine translation: https://demedischspecialist-nl.tran...n-mecvs?_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en
 
That sounds frightening @MatthiasRiem. Some of the committee are from ME/CFS charities?

I note that the process is aiming to provide guidelines for adults only - which conveniently sidesteps the Magenta study. But of course the guidelines will be applied to children. I wonder if the charities could argue for the guideline to cover children and young people also, as NICE's guideline does.

And of course the Cochrane 2024 Larun et al is all bright and shiny and new, ready for this guideline development process. Will there be public consultation?
 
Post-COVID expertise centers for children open in The Netherlands
(February 1).

All University Medical Centres in The Netherlands (Google translation
from Dutch to English),
https://www-nfu-nl.translate.goog/a...eren-open?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

Amsterdam University Medical Centre (Google translation from Dutch to
English),
https://www-amsterdamumc-org.transl...-open.htm?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

Maastricht University Medical Centre (Google translation from Dutch to
English),
https://www-mumc-nl.translate.goog/...eren-open?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en

Utrecht University Medical Centre (Google translation from Dutch to
English),
https://www-umcutrecht-nl.translate...eren-open?_x_tr_sl=nl&_x_tr_tl=en&_x_tr_hl=en
 
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Postviral Ethics Conference talk #NietHersteld

Video description:
We gave a talk at the International workshop on Postviral Ethics, organized by Post Covid Network Nederland (PCNN) and the Radboud Center for Philosophy and Society, University Nijmegen.

In our contribution we talk about who we are and what we do as #NietHersteld, how we try to make the voices heard of ALL patients with a Post Acute Infectious Syndrome (PAIS), especially groups that are often overlooked, such as severe patients, patients with other PAIS than Long Covid, and children.

We discuss the importance of accessibility and inclusion, how we try to include those values in the way we shape our activism, and how we need solidarity from able bodied allies to become more visible in society.
We also talk about our own knowledge gaps and about how important it is that doctors, journalist, policy makers, researchers, etc. work on their knowledge gaps: they need to see and hear different patient perspectives to get a more accurate and deeper understanding of these illnesses.
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Snippets:
[...] so much knowledge, for example in the context of patient communities, has been provided by patients with ME, and they were the first to warn people on social media when the pandemic hit, to be careful with the possible long-term effects of COVID. And they knew that there would probably be a group that would become chronically ill.

We have learned so much from them but they've almost never been able to really benefit from the extra attention and influx of money that long COVID has received. [...] So when we mention that they might benefit from it in the future, we should realize that it's actually more the other way around. We have been benefiting from all the knowledge these diseases and patients communities have given us.
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If we could, we would set a protest. We would chain ourselves to fences. We would be in people's faces all the time, so that they can no longer ignore us. But we can't, and the only way we could ever do this is if we had able-bodied allies. And what we have experienced thus far is that in the end it always comes down to a gap between the world that we live in as patients and the other world: the world of the able bodied which is also the world uh where policy makers researchers and journalists are and we are simply too sick to bridge the gap between those worlds on our own. So we need the solidarity and efforts of people from that world as well.
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Almost 500,000 Long Covid suffers is "tip of the iceberg"

Some 450,000 people have been diagnosed with long Covid since the virus first appeared in the Netherlands, 12,000 of whom are unable to work full-time, according to new figures.

The number of patients entitled to an incapacity benefit known as WIA, paid out to those who are off work for at least two years, has quadrupled from 3,000 since 2023, the unemployment insurance agency UWV said.

But patients’ organisation PostCovidNL said the figures represented the tip of the iceberg. They estimate that 90,000 people are currently struggling with long Covid, but many are not entitled to claim benefits.
LINK
 
Dutch News said:
12,000 of whom are unable to work full-time
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Unless I misread it, this is a laughable undercount since it only accounts for people who have been approved for disability benefits. No mention in this source but I saw it elsewhere, and do correct me if I'm wrong. And it makes sense, we know about 90% typically don't get approved. But what a terrible way to frame this, clearly on purpose.
 
What about people who can't leave their homes and continue to cancel appointments and listed as "missed appointment" on their file without any explanation.
 
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