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What makes me think that people with the same or similar features are more likely to have the same or similar underlying genetic issues? What kind of ridiculous question is that? As stated earlier, there are obviously many issues with definitions, and with mixing traits with...

I would like to push back a bit on this but currently lack the energy, I might follow up, but in short: Bendiness is the clinical feature, though, and if you get a lot of people with let's say bendiness plus cigarette paper scarring or visceroptosis (or whatever,…) and these patients are what...

Is that so much worse than “making up PEM as a core feature,” which after all is not substantiated by any (diagnostic) biomarker? Also interesting re: rare causes of bendiness - how were these rare potential causes identified? By using some “somewhat arbitrary cutoff/criteria” for inclusion...

Like ME/CFS is a 'being tired, deconditioned and lazy disease' (all part of 'normal distribution' after all!), you mean? Like the 500-fold (?!) disagreement about definitions for ME/CFS? Your views on this matter are well-known, they are partly correct and what is, is hardly any news to anyone...

hEDS is almost certainly a meaningful diagnostic concept. Whether it’s called EDS or not shouldn’t matter that much. The label stuck because in some cases it does resemble other forms of EDS (it does in my case). The difference is/might be that it’s largely polygenic, not monogenic. Acting like...

Absolutely, that wouldn't necessarily mean that it's not primarily neurological.

I agree, it’s very difficult to find clinical or research centers capable of carrying out this kind of work (I tried without success in Europe for a while but had to give up due to the severity of my illness), even when funding is available and there are enough patients willing to participate...

I am not entirely sure, but it seems the older study relied on the Fukuda criteria and included only a relatively small sample. This raises concerns about the dataset’s quality, particularly given our current understanding of ME/CFS, in which post-exertional malaise (PEM) is recognized as the...

Completely unclear how anyone could think LC and ME/CFS are not primarily neurological disorders.

Mostly agree, I have been part of too many advocacy meetings where people discussed how to make patients look sicker fr shoots etc. so that it fits the severity of the illness - I think that's almost as bad/insane as the hand on the forehead women photos. That said, severe and very severe...

I just wanted to note that shoulder-girdle problems were described many decades ago in relation to ME—originally “ME” as discussed by Ramsay. A few doctors who treated patients for decades believed that ME/CFS might be a spleen-related disease. Many people also report issues with lymph nodes and...

They are very likely not even in the TOP 1000 of the richest families in Austria - which is a shame because if they were they could really pump in big sums. The Gala is not organized by WE&ME, but close friends of one of the sons. Statistically speaking there must be hundreds (or even low...

Yes, arterial. Really? You don’t think it’s possible to have low oxygen saturation due to a lack of central drive or dysfunction of the diaphragm and thoracoabdominal respiratory musculature? Maybe I am confusing/missing things here, but I don't think so.

I am not changing my argument, I think both central hypoxia (=hypoxemia =lack of oxygen supply; existing CBF studies might strengthen that argument; blue lips, extremely cold nose and ears, cold sweat, might be indicators too) and cellular hypoxia could be part of ME/CFS, and they could...

I don't know if the thickening is a real finding and/or relevant, but that cellular hypoxia and reperfusion (caused by the thickening and increased demand of a CPET) could have delayed effects wouldn't be all that surprising? 'Neural events' could certainly cause the issues seen in ME/CFS...

That seems like an oversimplified take, and I don’t mean any disrespect in saying that. You can have cellular hypoxia without hypoxemia when oxygen is in the blood but tissues can’t use or access it (e.g., anemia, poor circulation, or mitochondrial 'poisoning' like with cyanide/H₂S or other...

Sounds a lot like what many patients describe, imo. That said, I doubt what happens in ME/CFS is equivalent to 'classical claudication' - which I believe is mostly related to a purely arterial pathology? That's of course compete speculation, but I think the 'claudication' pain in ME/CFS is...

I would be very surprised if you find many severe or even moderate-severe ME/CFS patient without (some form of claudication) muscle pain - especially with overexertion. It's certainly not (exclusively) knowing that I am getting worse afterwards or 'central fatigue' that keeps me from moving. I...

Ingrown nail?

I do believe that ME/CFS is predominantly (but not exclusively) a central nervous system issue, essentially a problem of the neurons and synapses, in how the network itself is functioning. (I do think there will be quite a bit of tissue damage, too, though.) But at the same time, we haven’t...