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In the context of the roundtable I actually get they're making it as opaque as possible. I'm hoping they're acting in good faith and posting on the assumption of that. If they would hold this roundtable and be very clear that it's only an exercise in telling the RC's to adhere to the guidelines...

She says she's taking PEM in account, maybe someone can do a screensave or something for later evidence if needed?

I've adjusted the posts above and translated the tweets as best I could. I think they paint a very similar picture as to what happened to M.E.-patients in the past. RIVM is the national institute for public health and environment in the Netherlands. They are the ones that throughout the pandemic...

13. Something that is also lacking from the questionnaire of the RIVM is the ability to add symptoms yourself. I'm missing a whole lot of those. How can you get a clear picture of long-covid if the list of symptoms is pre-determined. 14. Don't get me wrong.... Anxiety and depression should be...

7. This is not good science and will contribute to psychologizing the symptoms. Bad practice, because closely related chronic illnesses like #ME #Fibromyalgia and #QVS have a similar history of psychologizing, causing real help to stay away(bad translation of my/Solstice's part) 8. Another...

Moved posts 1. As a longcovid patient i'm a part of the longcovid research project of the RIVM. Three months back I filled in the first questionnaire, today I filled in the second. I'm worried about the quality of this research. 2. One of the most significant symptoms of longcovid is a...

Good point, if I overexert I get a whole new gamut of symptoms.

The article is so good it would warrant it's own topic imo.

Does the Guardian not have a comment section below their articles by the way? I thought they did, but can't find it.

If I were a betting man I'd say he wants to stay on our good side so he can keep "treating" us if the guideline gets published in full. I don't know this Prof Garner, did he/she have a vested interest in treating us?

If he publishes a trash story uncontested, I don't really see what there is to lose by setting him straight. Preferably this is done by people with calm and a good handle on the situation, but I can't blame people for being angry. If he gets put of writing any further on M.E. then that's too...

Even for just fatigue CBT/GET has been shown to have no effect though.

It are also the initials of Trudie Chalder, which is why the thread really confused me at first.

If not maybe someone could be willing and allowed to respond with it. Like previously done with quotes from @Jonathan Edwards .

Seems to me like a man who knows exactly what he's doing to be honest. I don't feel that these people lack intelligence. He's twisting and turning every opposition to his point of view on his arse, trying to make himself look like the sensible one. We know that he isn't making any sense, but I...

I've worn an actimeter before my treatment with CBT/GET and it wasn't a bother at all. The thing got hooked up and the only time I had to mind it was whilst showering. This was in 2003, I'd imagine the devices have gotten better and even less intrusive over time, but I'm not sure about that.

I have followed CBT/GET at Het Roessingh in the Netherlands and the experience was harrowing both from a physical as from a mental viewpoint. There was a lady there that had applied but was unable to partake in the activities set forth who was basically shamed for not being able to do so. My...

Sorry for being ignorant, but I haven't been actively reading here in a while. Where can I read about the NICE stuff? Would anyone be able to provide me with a link to the topic on this forum?

Aunt has longcovid and her "bedrijfsarts" the doctor that works for her work told her the last thing she needed to do was go to the physio, whereas her GP was of the mind it was all burnout and was pushing to put together a program with said physio. Usually it's the other way around, but she's...

The important caveat that Lipkin included in his statement was that enough funding was provided. This still doesn't seem to be the case.