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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...

FYI, this phrasing makes it seem like you’re saying that the wider inclusion criteria is acceptable because you like the results and want to apply them to a narrower case. What we want is irrelevant.

Iirc, the studies that have looked self-reported ME/CFS status in combination with a symptoms survey, about 50 % of the self reported patients do not fulfill the criteria. The main causes are probably a poor understanding of what ME/CFS actually is, from either the patients or their doctors.

I still don’t understand how you can use a CF study to say something in general about ME/CFS unless you’ve 1) proven that you have a representative sample of the CF population, and 2) the ME/CFS subset is large enough to have the required statistical power. The fact that I don’t understand...

Just to clarify, this is what I’ve been trying to say. Medfeb said it a lot better. @Jonathan Edwards I don’t know if it’s correct, but it’s my current understanding.

@Sly Saint 94 % on the watch during the night was normal according to him. I would guess that <80 % isn’t in the normal range. I would see a doctor about that!

Thank you for dealing with all of my questions! Wouldn’t the likelihood depend on the selection method, the number of participants, and the distribution of humans in the pool of animals that the participants were selected from? I.e. doesn’t the the number and ratio of humans affect the...

That seems very backwards to me. I might be too foggy to understand this now, but I still don’t get it. If you have a group of people with CF, and you don’t know if they have PEM or not, how can the results be generalized to everyone with PEM? You can’t prove that anyone had PEM, and you can’t...

No, I did not catch the «something» part.

I slept with a device to exclude sleep apnea. My spO2 was 94 % on my Venu 2 Plus, but the external measurements were fine. The doc said it was normal in all people.

@Hutan I agree that methodology is the core issues. But it should also be noted that when you don’t differentiate based on PEM, all of the responders could have been the non-PEM patients. In itself, that makes the studies non-generalizable to ME/CFS with PEM. If they fix their methodology...

I might have misheard things, but here’s a brief summary. He starts by asking the attendees what they know about CFS. Someone said «lethargy» and another person didn’t think there was much difference between Neurasthenia and CFS. He did suspect that the latter was more acceptable among...

@ME/CFS Skeptic for reference: https://mecfsskeptic.com/a-rebuttal-of-flottorp-et-al-new-nice-guideline-on-chronic-fatigue-syndrome-more-ideology-than-science/

Why not? Power and money are potent motivators.

I doesn’t surprise me.

It’s like how lawyers or auditors oversee eachother.

I learned about it at VGS (upper secondary/high school). Might have been my statistics teacher that was very into methodology.