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and the 5min snapshot from 'a professional' somehow counting for more than someone else seeing 24/7 - which is where the illness becomes blindingly obvious. What they say plays to that snapshot situation maybe for an illness where the overdo then collapse out is the distinctive part. It is like...

Good description on that aspect in last para. There's the 'past limit' as well as PEM in the delayed sense (and various different types of this) And if we are talking 'end of the working day' exhaustion (which a doc might term fatigue) then the closest 'story' I could use to describe is...

PEM also seems to operate on a big old cycle - you've flared something up like a big allergy or nasty acute illness has those feelings of 'I know this stage' once you've been through them enough times before. Which would be easy to explain except for the fact that different types of activity and...

Yes it is distinctive - one issue/curiosity is whether it is distinctive in the same way across all with ME. I think the PEM tells us a lot - it isn't quite what you think it is unless you live it and see the pattern adn way it varies between things, it feels like a big old signpost of your body...

Yes, fatiguability is the 'universal', given how people will have to tenaciously manage things and many use the 'wired/adrenaline' to get through things, so the idea that you'll see someone looking a bit slow a any point in front of you is inaccurate. A former athlete and top of class no issues...

Flu is an interesting example. In the UK an anaology commonly used (I'm sure by TV doctors over the years, and probably real ones as well as laypersons cribbing it from whereever they hear it): "you know whether you have a bad cold or the flu because if there was a £10 note blowing around on...

Do you mean something along the lines of what is discussed in the following?: https://www.the-rheumatologist.org/article/a-historical-look-at-the-characterization-of-lupus-as-a-systemic-disease/?singlepage=1 Probably not the perfect example, but on the basis of speed and sticking within...

What is really confusing - and has just struck me (for some reason I never pictured this before) - is that if the history is as I have read it you would have had people with ME/CFS on wards with people who had depression. I've seen those with depression of various types up close. You are 100%...

A self-imposed Truman Show

So many 'only illness that their one treament can't benefit' you'd think people would cotton on to how many they've said this about

Yep. Doesn't feel 'research-led' or 'science-led' (certainly not in the observation sense) or 'guideline led'. More like they feel they have to tick these boxes a little bit. They'd decided in 2020 position paper that they were going down the 'dysfunction' route, and to offer 'graded exercise'...

Would be interesting to see what the critique was. On a side note I looked up the 'Clark et al (2019)' that is quoted at the very start in italics in the paper on dysfunction in ME that BACME did in Aug 2021 and have on the guidance section of their website. DO we have a page created on this...

From my experience this is starting to sound spookily close

When you compare all this (and the measuring on a subjective fatigue scale, rather than 'how ill are you' and whether PEM/PESE is elicited) to what Physios for ME managed to work out when mapping the same illness in a short space of time... you'd think they were different illnesses. And there is...

I think that is a good summary of my thoughts. I'm not ready to assume credit is due to good things for the name change - although it would be terrible if they had not updated the acronym to account for the change in order of CFS/ME to ME/CFS, does it really say something more than either this...

100% agree. COme to Jesus moment happens and they haven't blinked an eyelid before or after when being the most close to 'doing the problem treatments under discussion and seeing or for some reason not seeing the impact of that' of anyone. They were the back stop that didn't see or speak up...

It will be insightful then to see whether they choose their front page image to be more representative of/appropriate to the illness than what seems to be a silhouette of an active children's playground. I don't expect anything other than something that does not unquestionably push/depict the...

Yikes, just read the following in the 'Positive Psychology' para of the FitzDonald-Davies et all (2020) paper discussed on s4me here Is it just me or does the above suggestion by these authors sound rather like the 'prelude behaviour' [for professionals to engage in so that patients are 'up...

"and even bed-ridden" !! says it all really. I'd guess even mild people would say that being 'bed-ridden' more often than they should be, for things minimal to others is the defining issue. And what % are bed-ridden for so much of their time that people say 'laying around in bed all day' about...

Yes the software/hardware analogy is really bad. We all know brains are neural networks for a start, so not like computers at all but social media, facial recognition programmes etc. In relation to body function whichever aspect of the Central Nervous System (ie not even just brain, nevermind...