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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...

It's important to note that some people do better in a warmer climate. Some mild cases even are close to remission. This can also partly explain why some improve a lot and that we see setback or dips in their health when the weather in the winter changes again.

This, wanted to write the same.

I'm not sure if this was posted here before, but I asked for the PDF of one of the responses by Hohenschurz-Schmidt et al.

Great article. Thanks @dave30th. I hope it will help get the conversation going about PAIS and PCF in the Netherlands and elsewhere. @M. Verhagen

Several surgeons, including Dr. Gilete, use dexamethasone post-surgery to reduce inflammation. If the brain is affected and neuroinflammation is present, it's possible that reducing this inflammation could contribute to symptom remission in some patients? Dexamethasone was also used in severe...

Shocking documentary. As well as the cases, as the lack of empathy in the answers by Worm and Klijn. You can turn on the auto translated subtitles in the settings @dave30th.

I respect anyone who tries to create something to raise awareness about ME. Personally, I can’t agree with the name Notjustfatigue. If it were called Notfatigue or something that distanced itself from the idea of fatigue, I might connect with it more. But the word just still makes it sound like...

Thanks for the summary. I think this study will do damage outside of the Netherlands as well.

Here’s the full paper. It seems that many of the criteria could also apply to PAIS, especially if physicians are not familiar with ME. Quite worrying if you ask me @dave30th.

I've seen some of the pictures on X. I loves the wide angled lenses being used. It really gives the impression of the bed as an island in the house. A lonely place of suffering. Well done!

Talk by Anouk Slaghekke where she's does a bit of a deeper dive about the study and some data/figures.

Peter likes to hype a lot of stuff on LinkedIn and YouTube. I haven't read his book but I'm expecting the same so I won't invest any time in it.

This study was conducted very early on in the pandemic. It apparently took a long time to get published, but at the time there was still a lot of collaboration. Many researchers didn't know what kind of role Knoop had. I suspect many researchers won't be working with him anymore. If I remember...

This paper talks about hypothyroidism. For me, L-carnitine makes me gain weight. A lot, yet when I stop I crash badly and lose weight rapidly as well. Also I have hypos, need to eat very often, OI messed up. It feels like my thyroid is slowing down due to L-carnitine, but maybe I'm wrong...

I agree that the brain is also heavily involved as well, maybe even primarily, that's not really the point, but I think it's premature to state that patients are experiencing an increase in symptoms with no driving pathology for example in the muscles. In my opinion we're really scratching the...