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An awful lot of medical professionals, in their 'professional judgement', still believe ME is not a real illness, so is indeed very often unevidenced bullshit.

I think my wife finds finds that helpful to a degree, but not in any regimented way; she is mild/moderate - not sure if that is relevant. As far as possible my wife tries to not sleep during the day, else she finds it harder to sleep at night; so she strives for standardisation in that sense...

No, I don't see @Jonathan Edwards is saying that at all! Suggesting running a trial to assess the truth about a hypothesis is not the same as saying you necessarily believe in that hypothesis. It is simply wanting to arrive at the truth, with good evidence for it. You have to follow the...

I fully agree, that's fine. In truth PACE would have been fine if it had been sound science, and had honestly reported objective results; everyone would have then known long ago that CBT and GET achieved nothing, and for science to look elsewhere. The crucial thing is for results to be honestly...

An aspect that maybe should also be considered, is the supportive care needed during hospital visits (emergency or routine), for conditions other than ME. I'm sure for a lot of pwME it can make a bad experience far worse. ETA: I see @Trish (and probably others) got in well before me. But it's...

Event-driven rather than time-scheduled.

Yes, that works for me.

Do we know what the inventory comprises, in order to assess what might be worth asking for? Or is it a catch-22 in that can only know once you have it? ETA: @Lucibee answered in x-post.

@ahimsa, I don't have ME, my wife does. I was once what I call the innocently uninformed, who I believe are the people you want to draw in. I think it is essential to not view this through the prism of the fully enlightened and informed. To me "America's hidden health crisis" is valid, but very...

Whatever you thought you knew about ME ... ... you are probably WRONG! People with ME just get very tired, like everyone else ... ... wrong! Even small amounts of exercise can leave people as if they ran a full marathon. etc., etc. Maybe with some scientist quotes like those comparing HIV...

Ah ha! I got it wrong, thinking it down to the fact that people called John often get nicknamed Jack, though I've no idea why.

Is it possible this blocking of DNA replication might also be happening during certain phases of the ME symptoms fluctuation? Just wondered because I'm guessing that if DNA replication has been held off for a while, then once the body has beaten the virus-or-whatever-other-spurious-trigger...

I find the "anything" very hard to accept, though would readily accept that many things could be physical, but it is a crucial distinction. Bereavements, for example, can significantly alter people's behaviour, especially the more 'unnatural' ones, where people lose loved ones unexpectedly...

If this is true then of course it would be good to establish. But then how do you go about clarifying that the neural inhibitory signals are not down to some mental condition that can be fixed by going round in circles and chanting stuff, but instead a real physical shortcoming, be it in the...

A question @Jonathan Edwards please. When you have flu, am I right in thinking that much of the fatigue experience is because the body's defences are diverting urgently needed to energy away from normal use, to "combat duties"; and that there would be deliberate control signalling needed to...

Is this saying that, if correct, the energy conversion and transport mechanisms could all be intact and OK, but that regulatory control of them could be screwed up?

As they say up North "there's nowt so queer as folk". There will always be some.

And maybe weakens future arguments against accessing more data.

That, of all observations, truly highlights the nonsense of ME being also labelled CFS. Because when I think about it that also fits with what I observe in my wife; although she is mild/moderate your observation fits very well. I suppose it is "chronic" in the sense that the overall condition...

The astonishing thing is that he needs telling. Seems to be part of the job spec for quite a few of these journal editors.