News from The Netherlands

Chestnut tree said:
For people reading this thread, what formatting do you prefer on the Parliamentary questions? The first one;
- a one page screen shot in silver gray (see the Bikker questions)
- several pages, but bigger font (see the Bushoff questions)
Click to expand...
In an ideal world: copied as plain text so that it shows up in the format I use for S4ME. I can’t really read with a white background, so the format of the images doesn’t matter much.

If that isn’t possible, the second one works better on mobile.
 
Two Dutch support groups have appointed Sophie Querido as new director.

They are:
- C-support (for covid aftercare)
- Q-support (for Q-fever expertise)

www.c-support.nu

Sophie Querido benoemd tot nieuwe bestuurder C-support - C-support

C-support heeft een nieuwe directeur-bestuurder benoemd: dr. Sophie Querido. Ze start per 1 september en volgt de huidige bestuurder Annemieke de Groot op
www.c-support.nu www.c-support.nu

www.q-support.nu

Sophie Querido benoemd tot nieuwe bestuurder Q-support - Q-support

Q-support heeft een nieuwe directeur-bestuurder benoemd: dr. Sophie Querido. Ze start per 1 september en volgt de huidige bestuurder Annemieke de Groot op.
www.q-support.nu www.q-support.nu

English

www-q--support-nu.translate.goog

Sophie Querido benoemd tot nieuwe bestuurder Q-support - Q-support

Q-support heeft een nieuwe directeur-bestuurder benoemd: dr. Sophie Querido. Ze start per 1 september en volgt de huidige bestuurder Annemieke de Groot op.
www-q--support-nu.translate.goog www-q--support-nu.translate.goog
 

Onrust onder patiënten met Q-koorts en long covid: nazorg hapert en dreigt te verdwijnen​


fd.nl

Onrust onder patiënten met Q-koorts en long covid: nazorg hapert en dreigt te verdwijnen

Patiënten die kampen met postcovid- of Q-koortsklachten willen duidelijkheid over hun nazorg en ondersteuning. Die ligt nu bij de bekritiseerde stichtingen Q-support en C-support. Krijgen zij opnieuw subsidie of gaan ze op in een grotere organisatie? Of dat op korte termijn duidelijk wordt, is...
fd.nl fd.nl

English Translation

Unrest among patients with Q-fever and Long Covid; after care is stalling and is at risk to disappear.
 
From @guustweet at X

Patiëntenorganisaties zijn ontevreden over C-support en Q-support. Ze hebben het vertrouwen in het bestuur opgezegd. #LongCovid #Qkoorts #QVS

English translation
Patient organizations are dissatisfied with C-support and Q-support. They have lost confidence in the board. #LongCovid #Qkoorts #QVS

Quote from the FD article



IMG_3101.jpegIMG_3103.jpeg
 
The dutch public broadcaster NOS, runs another article on MEcfs.

The item details an open letter that was signed by 100 healthcare workers and sent to the NVK (Dutch association of pediatrics) and the VGCt (Association for Behavioral and Cognitive therapy) where they call for change to the current MEcfs treatment guidelines for children and adolescents.

Zorgcollega's roepen kinderartsen tot de orde over uitputtingsziekte ME/CVS​

Dutch version
nos.nl

Zorgcollega's roepen kinderartsen tot de orde over uitputtingsziekte ME/CVS

Artsen en psychologen roepen collega's op om niet vast te houden aan achterhaalde behandelingen.
nos.nl nos.nl


Healthcare colleagues call pediatricians to order over exhaustion disease ME/CFS​

English version
nos-nl.translate.goog

Zorgcollega's roepen kinderartsen tot de orde over uitputtingsziekte ME/CVS

Artsen en psychologen roepen collega's op om niet vast te houden aan achterhaalde behandelingen.
nos-nl.translate.goog nos-nl.translate.goog
 
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"The realization that I may have wronged young people with ME/CFS, often seriously ill, is painful," says former GZ psychologist Wieke Pasman, one of the signatories. Pasman contracted the similar long covid during the pandemic and, as a patient, did notice that cognitive behavioral therapy as a treatment has risks for people suffering from diseases such as long covid and ME/CFS.

'Self-reproach'​

“At the beginning of my own illness, I struggled with self-reproach, partly because I had missed biomedical knowledge about ME/CFS, despite always keeping a close eye on the scientific literature.”
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I’m glad they’ve changed their mind, but I find the last part a bit lacking of self-awareness. Anyone that had seen any of the BPS literature on ME/CFS should be able to recognise the flaws. The issue isn’t that they missed the biomedical research (there isn’t much regardless), but that they didn’t see through the terrible BPS research.
 
Here is a link to the open letter that 100 healthcare workers signed and sent to the NVK (Dutch association of pediatrics) and the VGCt (Association for Behavioral and Cognitive therapy) where they call for change to the current MEcfs treatment guidelines for children and adolescents.

In Dutch

Adobe Acrobat

acrobat.adobe.com acrobat.adobe.com

In English
www-linkedin-com.translate.goog

OPEN BRIEF – Meer dan 100 ondertekenaars - artsen, psychologen en andere zorgprofessionals - zijn klaar voor verandering in de zorg voor kinderen en jongeren met ME/CVS. | Tanya Hautermans

OPEN BRIEF – Meer dan 100 ondertekenaars - artsen, psychologen en andere zorgprofessionals - zijn klaar voor verandering in de zorg voor kinderen en jongeren met ME/CVS. Naar aanleiding van de NOS publicaties van journalist Sander Zurhake over de behandeling van kinderen en jongeren met ME/CVS...
www-linkedin-com.translate.goog www-linkedin-com.translate.goog
 
The insane state of this ideology, where quacks peddle debunked pseudoscience by lying about it being banned, when it's actually not recommended anymore after having been unquestionably found to be a massive failure, while their pseudoscience is often forced, including on children:
According to the findings, parents had faced threats of child abuse after refusing to allow their kids to be treated with this approach.
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They sit on a throne of lies, calling their victims liars for telling the truth. You can't get that wrong without making every wrong decision along the way.

And, of course, the same with their lies about activist pressure, from lobbyists and authorities applying pressure:
He further noted: “My editors and I experienced strong pressure from the NVK not to publish or broadcast this story. We therefore had multiple sessions to double-check my research and source material. In short, we did not rush into this story…We also offered the NVK the opportunity to express and explain their vision in front of the camera until the very last moment. In vain.”
Click to expand...

“The letter writers believe that the Dutch Association for Pediatrics and the Association for Behavioral and Cognitive Therapies should adjust the treatment guidelines for patients with ME/CFS based on current science…
Click to expand...
Fundamentally correct, but this won't be enough. Wrongs have to be righted, a few small adjustments won't do it. People need to pay a steep professional price for this, it needs to hurt so that the cycle of institutional violence ends. Pseudoscience is wrong. Harm is wrong. Those are supposed to matter, but they will only actually matter if they are made to, with consequences for violators.

Kudos to Zurhake for having courage here. And thanks to David for having been courageous long before most.
 
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