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My example was to illustrate what would happen if you had the purely hypothetical situation when Dara was not prescribed as part of a pilot study but if instead you would have a comparable Twitter situations. Various people taking various drugs for various times at various dosages with one of...

But the broadness makes such statements meaningless doesn't it? If asthma following a Covid infection is considered Long-Covid which some consider it to be, then it can only be more common than asthma because everybody has gotten Covid. Others will tell you that FND is the most common condition...

To me, a layman, the main difference between MCAS and ME/CFS as concepts is that one of them is concept that is more free of belief or implications. All you need to have, to have ME/CFS, are certain symptoms for a certain duration, nothing more. The concept isn't married to a certain pathology...

Reminds me of that Cochrane review on rehabilition post-Stroke that @Utsikt recently posted: https://www.cochranelibrary.com/web/cochrane/content?templateType=full&urlTitle=/cdsr/doi/10.1002/14651858.CD001920.pub4&doi=10.1002/14651858.CD001920.pub4&type=cdsr&contentLanguage=

I see those as 2 different things. One is about remaining in a position of being beneficiary the other is about what happens once that position is lost. Maybe the Garners of the world will keep on fighting the good ole anti-anti-recovery activist fight, but I'd be surprised if that applies to...

I think the majority of people really don't care that much. Some will have retired and others simply move on. Rinse and repeat.

I think it really depends on what you mean by "BPS proponents". As for anything else there will be hardliners that have made a career out of something and don't care what is going on and where engagement is pointless. This probably drives some policies in regards to ME/CFS. But there will...

I think the a very unconvincing thing is that this team is supposed to have an antibody assay that is accurate in indentifiying Long-Covid developed with a commercial partner and this is what has been said in the media and elsewhere by den Dunnen et al for several years (see also here), but...

I intepreted @Siebe comment to mean that all people in the non-responder group probably don't look very different to many of those in the responder group in terms of the current NK cell narrative. I think we've seen several people posting that these numbers anyways fluctuate quite heavily, them...

Possibly, I don't know, my name isn't Lindeberg (and I think we've already seen data to indicate that it is not the case), but I don't see it mattering much to the problem you're dealing with here. I'm under the impression that the one has little to do with the other. So am I am. Of course the...

I suspected you did the weighting to prioritise things that lead to more improvement but do we really know things such as: Do we really know this? Plenty of medications that work tremendously well might only show minor responses at first or if given in a wrong protocol and similary you have to...

Welcome @hallmarkOvME ! I don't think there are dedicated threads to most of these works here on S4ME but a few members with relevant background have commented on the books and its content at various timepoints. The views I've seen are always that it is nonsense (see for instance posts 1 and 2...

As an example of such complications: In the unblinded Daratumumab study positive effects (which we don't even know to be drug response) were possibly only seen in a subpopulation with certain NK-cells (which we have no idea about whether it was even a genuine effect and it wouldn't pass and it...

There is a mention that publication bias effects results of papers on treatments and that this is not the case for this approach but fails to mention that this approach suffers from other problems such as popularity bias, which in certain instances is just a result of publication bias and even...

One study might have shown a correlation between MS and COVID-19 hospitalisations, but that is something very different to showing that Covid-19 increases MS risk. As you say even in the case of EBV increasing MS risk, the onset is years, often decades after infection so you cannot expect any...

The problem with such an argument is that they tend to not be sufficient if lack of junk clearance is supposed to be the cause of symptoms. What was originally proposed was, is that you feel worse after extra sleep following waking not equally bad. So you have to somehow argue that there is an...

If they have certain symptoms for a certain period of time and all reasonable tests to rule out an alternative diagnosis have been conducted they have ME/CFS by definition. There will always be some borderline cases where one might question whether a diagnosis of ME/CFS is actually useful (for...

It seems to me 2 different things are being discussed: People sleeping less than they would like to, i.e. "shorter sleep". Waking up after sleeping and going to sleep again afterwards, but feeling worse after the second wake up then the first, i.e. something more akin to "interrupted" sleep...

Is this ME/CFS specific or common enough in other people, healthy and otherwise?

I think one also has to admit that this wasn't only a BPS narrative but also a narrative spread by people believing in a "biological basis". For example Putrino and Iwasaki were giving widespread interviews on having found a "biological basis" and biomarkers for Long-Covid on the basis of...