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Young healthy participants with regular sleep schedules were recruited from the general public as described previously (26, 58). Participants either followed the protocol of a sleep deprivation experiment [experiment 1: n = 12 (25.6 ± 3.9 years old, one female), experiment 2: n = 11 (25.2 ± 7.4...

If the objective is to figure out IBS, then yes. I have had IBS for over ten years. It changed after I got Covid and PEM as a result of that. If the objective is to figure out ME/CFS, being strict about having PEM makes sense. The effort preference NIH study did not make sense because they...

He also talked about pacing up.

Any reason to believe that activity levels could affect SFN?

And blinding!

Any suggestions on how to do that? And what’s the target group?

Wide definitions lead to more heterogenity in the studied population. This added noise makes it more difficult to find patterns and results. When we have limited resources, it makes sense to study only the strictest definitions first, and then expand the inclusion criteria once we have...

We would be branded as delusional and in even more need of treatment.

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...