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Yep. They fear us alright, as they should. Not because we are any physical threat to them, but because we are onto their shabby cruel game and are successfully pointing it out to the world.

+1

Also, asking patients with the experience that ME patients have had of sustained extreme focus on the (alleged) psychological component and pressure to report a good outcome is going to be fraught with difficulties, to put it mildly. About as problematic as it gets for obtaining reliable results.

Yes, this is a systemic failure. Obviously, particularly early on, there are a small number of individuals who have to take a very large chunk of the blame for kicking it all off and entrenching it (and continuing to do so to this day). But ultimately the problem is only going to be solved at...

Nor meaningful, practically useful content.

Losing a child is hard enough for any parent. But when it is your only child, and in these circumstances... :cry::cry::cry:

Because we have to. For two reasons: it has been turned into an unavoidable issue by the psychs ruthless exploitation of it, but also because understanding how volition works and doesn't work in ME/CFS is part of understanding ME/CFS. Of course, I don't mean in the sense that our volition is...

It also starts running into issues with how an organ is defined. For example, is the extra-cellular matrix an organ? The amorphous component of it another separate organ or sub-organ? What is the difference between an organ and a system?

Well it certainly won't suddenly reverse everything, that is never going to happen. But all this stuff adds up.

And anything using Oxford is worse.

It is complicated, but I broadly agree with that. Not making a prediction, but I do think there is a fair chance whatever the pathology is that underlies ME it is going to turn out to be relatively common, and explain of a lot of health issues beyond ME. Also that it might be something...

And partly, in the voluntary sense, from very hard earned experience about what happens when we do try to ignore it and push through. Which is what pacing is all about.

While not all blame can be spread around equally, with some having to take a bigger share than others, the reality is that these kind of failures are more systemic than individual. And that is much harder to fix than a single rogue individual. Few things anger me more in this whole shitty farce...

That is how they win. They can't meet robust methodological standards, the ones they demand of non-psychosomatic research, so they simply lower them until they can. Et voila! Success! It really is that appallingly bad.

One of the core features of snake oil medicine is how much it claims to explain, and hence can cure. It is magical thinking, par excellence.

"might" ??? How did this not internally trigger a major overhaul by the Trust of their handling of ME/CFS cases? Just sickening. But sadly not in the slightest bit surprising.

The admission of not understanding is where understanding begins.

Or to accept. We are also having to fight with one hand behind our back, in that the standard biomedical arguments have meet to be accepted are much higher than those for psychosomatic arguments. It should not be that way, but in practice it is. That puts you on the same level of knowledge as...

And boatloads of superficial, ideologically driven, subjective interpretations. I remain unconvinced there is even such a thing as FND, certainly not in any sense that makes it a reliable and useful entity. The concept, definition, and diagnostic process are a hot subjective-soaked...