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When a PwME hits this completely done in stage, it is presumably possible to test if there is any unused oxygen still available?

Do we know if PwME can safely exercise to their anaerobic threshold. Or might there be some other disease-specific threshold they may reach before that, with potential risk of harm if pushed further?

Many thanks.

Yes, if the study is well-intentioned then that is a great start. But it's crucial they understand that any normal monitoring for harms may not be adequate for PwME, given how many reports there are of PwME going from mild/moderate to severe from graded exercise programmes that supposedly...

From my position of medical ignorance, I'd assumed this was what happens with PwME anyway, on a routine basis. I remember reading maybe 10 years or so back, that a PwME effectively "hits the wall" much like a marathon runner does it, except that for the PwME it happens pretty much every day...

Is this it? http://www.margaretwilliams.me/2013/role-of-science-media-centre-and-insurance-industry.pdf "Section 4: The SMC’s campaign against ME/CFS patients" This is accessible from MEpedia's page (ref 98) ... https://me-pedia.org/wiki/PACE_trial#Prof_Malcolm_Hooper.27s_complaints

And yet penetratingly blunt.

Yes. A bit like asking people how yellow something is.

A fundamental problem surely is that with such questionnaires the signal-to-noise ratio is appallingly low. The noise level is going to be very high, whilst many of the signals being supposedly acquired will sit well within the noise. And the noise is nothing like random.

Indeed, it is an excellent example of one of the more destructive forms of positive feedback, where something goes into "runaway mode", recursively feeding on itself rather than on anything independently grounded. I would think like a lead balloon in some quarters ;)

Wow - @Brian Hughes is not backwards in coming forwards is he! Well done Brian :).

Yes, some journalism does have a way of taking what someone says and then processing it so it sounds more like what they think their readers might prefer to read, with little care for what was actually said, nor how it was said.

Key is to record sufficiently rich data in the first place. Exactly what information proves most useful may not become fully apparent until part way through the data collection phase, but so long as the necessary data has been recorded, then that information should be extractable. But of course...

I think this is valid. When I walk with my wife, and sometimes comment on how well she is doing, she reminds me that it is because she has her camera with her. When in photography mode, we have lots of brief stops whilst my wife takes photos, then we move on to the next photo break; in effect a...

Interesting. My wife had a nasty flu bug appear the day after having an operation (so the bug was presumably already taking hold when she had the op). So we tend to think that it was maybe that double-hit that tipped over the edge into ME. But of course that is purely conjecture. The ME onset...

Also known as Playing God. We all end up having to do this at times in real life, because life sometimes puts us in such situations without any choice. But the crucial thing is, when we have no choice but to make decisions on someone else's behalf, that we also have the considerable integrity...

I think it means some amongst them must be aware of his criticisms, and that final comment just validates what @Brian Hughes says, though I doubt that speaker had the slightest awareness of his doing that.

Sounds like there is a re-branding exercise underway so GET becomes acceptable? Or might it be that decent therapists realise the foolhardiness of GET, yet have to operate under its banner, so adapt it to something that is actually caring and effective. i.e. Pacing. Probably both I suspect.

Yes!

That is heartening. If the environment really is going to be such, that anyone seeking to push bad science in whatever form, will be exposed for what they are amongst peers who will not tolerate it, then who knows - they just might learn something useful.