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Thanks. I'm sure there will be more reporting. The NOS is normally not a long read reporter, but he always manages to add some good bits. The title should be NOS. It's now spelled NOH.

Same and we were also part in helping pick out the image. Which I'm still not sure if it's the best one, but that's besides the point.

Absolutely. The NOS is considered the most reputable news source in the Netherlands. He also has a black belt in jiu-jitsu — I told him he deserves one in journalism too. Pretty fearless. Just like @dave30th, by the way. It’s thanks to his work that other journalists, like Sander, now dare to...

A must-see interview by investigative journalist @dave30th with NOS journalist Sander Zurhake about his recent publication concerning CBT/GET in children with ME, long COVID, and IACC/PAIS more broadly. How patients and their loved ones are sometimes coerced into these treatments, and how — if...

Copied from the News from the Netherlands thread A must-see interview by investigative journalist @dave30th with NOS journalist Sander Zurhake about his recent publication concerning CBT/GET in children with ME, long COVID, and IACC/PAIS more broadly. How patients and their loved ones are...

Quite shocking read to be honest. Crazy prices. No wonder these docs are hyping as much as they do. They need patients willing to pay the price.

As a patient rep working closely with biomedical researchers here in the Netherlands, I can confidently say they do see signs of real damage in the body and the findings align with what we see elsewhere. Yes, it's preliminary, for the moment unpublished, and the research is still developing...

As a patient rep working closely with biomedical researchers here in the Netherlands, I can confidently say they do see signs of real damage in the body and the findings align with what we see elsewhere. Yes, it's preliminary, for the moment unpublished, and the research is still developing...

My response:

Bateman Horne Center replied both on my Facebook page and on X. It was addressed to @MittEremltage. Read their full response here.

I wrote a post about it on Facebook: https://m.facebook.com/story.php?story_fbid=pfbid02ueSs9o5xK9VzwcyWHzRy8DfBARbmjDtLgpiikNZMACRHbwaDbojiXFkT6kGYmRFAl&id=100061511663193

https://www.healthrising.org/blog/2025/06/15/craniocervical-instability-chronic-fatigue-syndrome/

"Did a Lab Study Just Uncover a Craniocervical Instability Subset in ME/CFS?" https://www.healthrising.org/blog/2025/06/15/craniocervical-instability-chronic-fatigue-syndrome/ By Cort Johnson.

Ah I understand. Yes, true.

Yes, but that's from 2018. She mentioned it maybe last year the year before.

Can't find her tweet, but she mentioned she feels she might have or has. At least hEDS.

One of the authors has posted it on x with the reasons why they wrote it.

I agree with this. Gillette was also criticized by Peul for not publishing anything about the surgeries. Gillette said we need to treat people as they're suffering and hasn't published anything useful. Answer Gilete https://archive.is/ ifU5A

I can't answer your question of course but these authors explain it as such: "Unfortunately, the diagnosis of EDS hypermobile type is based purely on clinical symptoms and signs because no genetic marker currently exists.3 There is a simple clinical screening test (4 or greater on the Beighton...

Assuming something is happening during or after the surgeries, I wonder if certain drugs—like dexamethasone, which some surgeons such as Gillette reportedly use—might partly explain why some people experience improvements. This drug was also used during the COVID-19 pandemic to treat...