News from The Netherlands

'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!

 

The 14 projects funded by the ZonMw Long Covid program in the Netherlands has been published. It looks quite impressive. The total budget has been increased from 6 to 11.4 miljoen euros.

https://www.zonmw.nl/nl/nieuws/honorering-van-projecten-biomedische-en-klinische-rondes-post-covid

 

More here

 

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:

 

Dutch NMCB is starting to create a biobank with #MECFS blood samples. They will send a nurse to your home if you're too ill to come to them. They also need blood of healthy people.

Newsletter: https://www.zonzijde.nl/NMCB-dec-2024.html

Sign up link: https://nmcb.eu/doe-mee/

 

Looks better than the Lifelines they wanted to use before (Rosmalen).
What a pity that I'm too old to participate. 18 - 65 years.

 

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

 

These are not the only worrying members. I am horrified.

 

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

 

Postviral Ethics Conference talk #NietHersteld

Video description:

https://www.youtube.com/watch?v=epIC1TV8XnQ

Snippets:

 

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

 

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.

 

Sympathetic article on Dutch public news site NOS.

Therapy for children with exhaustion disease ME/cvs questioned.

Dutch version

https://nos.nl/artikel/2569260-ther...uitputtingsziekte-me-cvs-in-twijfel-getrokken

English version

https://nos-nl.translate.goog/artik...=nl&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp

 

Finally some people start thinking about ME/CFS Thanks for posting!

 

NOS News: Some immediately stopped thinking again

The Association of Pediatrics says CBT/GET works and they have proof, they say.
And what about the proof that it causes harm?

A country where specialists stopped thinking decades ago!

 

In the 18:00 TV News, the Dutch Association of Pediatricians however said CBT for CFS/ME has been proven.
Also, in this news item, Rob Wust defended PEM.

The news programme (Dutch only, no translation available) can be found here,

https://npo.nl/start/serie/nos-journaal/seizoen-25_2/nos-journaal_99249/afspelen