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My uncle has bery severe MS, he understands PEM very well. Idk if he has the exact type of PEM as someone with ME/CFS or LC, but it’s something similar.

I’m not confident that all doctors will even read the editorial note..

It’s quite simple: They don’t care about the efficacy of the treatment. All they care about is being the one to deliver (and profit on) the treatment, and being seen as an expert. They might believe that they care about helping, but they are unable or unwilling to acknowledge that they don’t...

According to this: no. https://ec.europa.eu/health/scientific_committees/opinions_layman/en/dental-amalgam/l-3/4-health-effects-amalgams.htm#1p0

Apparently, NCF (Norwegian LC Association) tried to tell the journalist about most of the flaws, including the lies about the effectiveness. It didn’t make it into the article..

I have no idea about the quality of these studies, but a sponsored Norwegian news article mentioned them. They are about patient involvement in healthcare. Maybe they are of use to you or the students? (sammendrag = link to abstract) Joachim Støren Sagen mfl.: Patient engagement in the...

Why can’t they talk about how the study found that the treatment was ineffective?!?

I can’t get over how small most CFS studies are.. That’s a very firm conclusion. Can they support it?

I feel like I’m going a bit off topic here, even though the questions are relevant for the sample collection process. Maybe we should leave it at «try to screen for PEM»? Another thread could be created to delve deeper into the correct questions phrasing.

There’s plenty of missinformation online about ME/CFS. And there are many understandable and valid reasons to seek out cures, treatments or reasons for hope, rather than the bleak «we barely know anything and we don’t know how to make you better». Keep in mind that the Norwegian National...

That really, really depends on the doc that diagnosed you. I know people that had a diagnosis for years before they heard of PEM. But I can’t think of a better set of questions, unless you go for some version of the FUNCAP wording.

IMO, one issue is the high levels of trust in our society, especially towards public institutions. When you couple that with conflict avoidance, the incompetent people are able to rise to power in the very large (30+ % of the workforce) public sector without being challenged. If I try to tell...

Toxic positivity comes to mind. And we’re not used to suffering. As a Norwegian, very few of my friends or family can handle talking about the reality of my current life. Some even instruct me to not talk about permanent disability, as if that is something unreasonable to think about when I’m...

Tuller has writen a lot about it: https://www.google.com/search?q=site%3Avirology.ws+fnd&rlz=1CDGOYI_enNO1120NO1120&oq=site%3Avirology.ws+fnd&gs_lcrp=EgZjaHJvbWUyBggAEEUYOTIGCAEQRRg60gEIODI5OWowajSoAgGwAgHiAwQYASBf&hl=nb&sourceid=chrome-mobile&ie=UTF-8

He recommended pacing up at the end if the video. IMO, he got many things right, but missed the target on a few key points. Personality types, Lyme/EBV, period of stress before infection, and naming (only CFS and not ME/CFS). Afaik, we don’t have conclusive evidence for personality types and...

@Jonathan Edwards I appreciate your patience! If you say that you study mammals, but only study rats, can you extrapolate those findings to humans because the humans are a subset of mammals? If yes, why do we need human drug trials?

I just want to be very clear: I am not claiming that indirectness is the main issue with PACE or the Cochrane review. I’m also not claiming that arguing about indirectness is the strategic approach from the different parties involved. What I am doing, is tryingy to understand why...

I don’t care what the result of my thinking is. I care about understanding the underlying mechanisms. And I currently don’t understand it. I stated earlier in the thread that I don’t have an opinion because I recognize that I don’t understand the full picture yet. Besides, the conclusion would...

FUNCAP might be a proxy here. Although one problem is that people might not know that they are in PEM if it’s a long crash (and they are not veterans in this game). I certainly didn’t last fall, but it was very obvious when I finally got out of PEM after four months. Rating based on you...

Here’s another angle that might explain why there’s focus on the diagnostic criteria: If you study a group that may or may not have PEM, then you can’t deduce that any positive results regarding effect or safety would apply to everyone with PEM. Why? Because PEM acts differently in relation to...