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Does this mean that they are removing ME/CFS, but keeping ME and CFS?

There is a live tracker at the bottom of this page: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/ It has been a >3M NOK for a while, but I’ve not been sure how much of that (if any) has already been included in the ResetME budget so I have not mentioned it before. In...

Based on the sections you’ve quoted, you’re probably spot on, @Hutan This is yet another case of tools looking for solutions and people being unable to consider that everything might be broken.

We have no idea yet about how severity might affect any response to Dara (if it actually works). And it wasn’t even tested on the very severe.

Sure, but others could also force you to eat in the same way that they would have to help you get food. So both would be alleviated by social structures long term.

Seems like Sivan is the Chair of the BSPRM Research and Clinical Standards Committee. That does not bode well..

Why would just that part of the mechanisms turn off eventually, and not the others? I’m not sure a person with ME/CFS would survive long on their own in a hunter/gatherer society, so there should be an equal evolutional pressure to get the other parts to turn off as well.

I’ve been thinking about this lately, and I think it’s more a case of medicine coming from complete quackery and not being able to move forward quickly enough. Therefore, psychology and BPS gets accepted. I had some physio/OT people nag me about doing more because it would make me able to do...

I think the conservative psychotherapy continues to thrive and exist because it’s convenient for the people that currently benefit the most from the western societal structures. And psychotherapy has become a useful tool for politicians and others in power. So it’s allowed, rather than created...

That’s BS. Virtual breakout rooms became standard during lockdown. They should be able to manage with a single staff member that can pop in and out to help people if there are issues. Planning virtual breakouts doesn’t take much extra effort. I’ve done it myself multiple times.

But they do not mention it outside the limitations and did not even attempt to control it whatsoever. So they can’t think it’s very important.

I thought PESE was part or PENE, which is a concept that speculates far too much about the cause of the symptoms? Regardless, they seem to think it means post-exercise-SE. Might be. The supplementary file includes tracked changes in the pdf so the attention to detail isn’t great.

It is telling that they never provide any reason for why pwME/CFS should exercise. And they never discus how having to exercise might have impacted how much someone were able to do in the days leading up to and following the bout of exercise. 67 is this, it’s not good...

I can’t get the numbers to add up here. There were 1 male and 29 female ME/CFS patients. But here they say there were 10 male and 20 female. There were 10 male and 20 female PASC patients, but those numbers can’t be switched around because there are too many male in the later PASC group for it...

It seems like the authors have confused PESE with PEM (the hallmark feature of ME/CFS). PESE would presumably include fatiguability, DOMS, etc. That is a not a very accurate description. PEM occurs if the person do more than their individual limit, either as a one off or as a result of...

So not very well matched then. Substantial difference in BMI, and especially gender for ME/CFS v HC. They’ve not even asked them to rate their activity level in general.

How active were the participants at baseline? Also, did they do any tracking of their activity throughout the day? If I was healthy enough to participate, I would have rested a lot before and after to minimise the impact of the exercise.

Thank you. The link to the supplement doc works, so at least I can read that. Do you know what they mean by «post hoc analysis»? I’m assuming the corrected for something?

I think this also shows why this kind of psychology where «society» is blamed might actually be blaming the individual. Because their solution is not to change society, but to change the individual’s morality etc.

How can 46/60 report increased physical fatigue while there was no change in any of the symptoms on an individual level? The whole abstract is very confusing.