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Yeah, I remember there was a focus on this before. I'm not sure why it ebbed away afterwards.

"Surgical screening protocol for craniocervical instability secondary to ehlers-danlos syndrome and other connective tissue disorders: analysis of a 347 patient case series."...

I'm not sure they were involved in this particular decision. I think they're referring to involvement in the research program in general? Not sure though, but it seems that Jeroen den Dunnen was also surprised by the decision of ZonMw as well. So I would be surprised if patients were involved...

ZonMw wrote this response on Linkedin: https://www.linkedin.com/posts/zonmw_zonmw-heeft-momenteel-een-subsidieronde-open-activity-7438258605885161472-rzJx?utm_source=share&utm_medium=member_desktop&rcm=ACoAAARREA8BzeyJJtciMwOrM0dNqu0SjEBHFxM

A prominent professor Marcel Levi, was also in disagreement with the decision by ZonMw. He said the following in a podcast: Podcast: https://www.npoklassiek.nl/fragmenten/de-ochtend/019cb289-ab95-72a1-b166-96261cba7a44/2026-03-03-ontbijtgast-marcel-levi Volkskrant article...

Rob Wüst will study the effects of mast cells on exercise, PEM etc. in Long-Covid. There seems to be a collaboration with the Belgian Derhave group as well.

Long overdue, but I finally made a transcript. Available in English and Dutch: ENG: https://anilvanderzee.com/doctors-as-patients-full-english-transcript/

This Lifelines study follows people for many years prior to an infection and found no significant association with psychiatric disorders and Long-Covid. https://academic.oup.com/eurpub/article/33/6/1163/7248369 “In contrast to previous studies, older age,9,10 smoking,9,10 cardiovascular...

The article seems to have been retracted: https://vu.nl/nl/nieuws/2026/artikel-in-eclinicalmedicine-teruggetrokken?fbclid=IwdGRjcAQN_8BjbGNrBA3_vGV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHhtMb8SS9pu_TV9ichJpqk_KmaTjD75KNgCDjkcUvrTyMCkQZSA40JJ-fsdH_aem_01-VtlCCuOD56loxNIniQQ

Interesting. From a quick scan, the study seems to show that cervical instability symptoms are entirely local to the neck, with no signs or patterns suggesting any connection to ME. Good find!

Hm questionable. Also no objective measures?

I'm unfortunately very disappointed by this paper. It feels like it tries to activate patients in situations where it should not. The gradual safe reconditioning approach is a train wreck waiting to happen. Some of it may still be applicable to very mildly affected patients, but as someone...

I'll ask and send this thread as well.

I think they have funding for that amount of time, but I am sure they will be publishing findings in the meantime as well. The speed at which they can study more brains depends on how many people are willing to donate theirs. The Dutch ME community is not that large, and many people outside the...

Just stumbled on this study and thread. The study has too many flaws to be conducted and the waiting list control group. What could go wrong...?

In my view this is probably the main reason. Scheibenbogen is also very media savvy. Another strength of this group is that they communicate clearly about what they are studying. Instead of referring only to Long Covid, they explicitly include "post-covid-ME/cfs". This improves visibility and...

No, you are right. That court case was about Cardiozorg, their diagnostics, and their testing approach, but they only performed 2 day CPETs on a small minority of patients. It was as far as I know never a requirement for diagnosis or for receiving benefits. Rob Wüst and sports physician Kasper...

That is a valid point, but since the Dutch context is mentioned. In the Netherlands the 2‑day CPET is hardly used anymore, if it is used at all. Apart from the scientific concerns, it is increasingly viewed as unethical. So at least in the Netherlands it will not become a requirement for...

I didn't realize there was a thread here. The reason I raised this point is that Knoop et al. claim CBT is effective for people with ME/CFS, and Huijbregts et al. wrote about ME/CFS as if that was actually researched in CBT. The CBT association (VGCt) did the same. I wanted to highlight that...

If I were offered this BS as a professional dancer, I would have left the studio. I absolutely hate when dance is used as “therapy” in this way. Yes, dancing and movement can be beneficial to some degree for connecting body and mind, whether you have a disease or not. That is true of any sport...