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Yes! before even I knew what was going on (so was desperately having to trudge through and keep doing), there was a point where someone noted to me that when I walked I looked like I had bendy legs. Combo of the muscle pains in different places, and probably muscle issues (deffo not...

Second this: "you always ended up with really bad tonisilitis (or something similar after tonsils were removed) every time you had a night out, or came back from a trip at school (particularly one that involved eg hiking in the rain)"

This is an important question to ask as it is exactly this we need to get others to understand. Particularly right now, as BPS are currently trying to do exactly the change of subbing in post-exercise fatigue or even post-exertion fatigue for PEM Although obviously the other thing with their...

thanks for confirming. it is hard to remember back. A bit of thinking back to when I wasn't quite as ill as I am (showering is now very much a small window every so often for me) and I think it was more about balance, dizziness - as well as it was common that I couldn't get to the end without...

Link to article: Many mental-health conditions have bodily triggers (economist.com) I'm afraid this is paywalled for me so can only see the first few paras to see PANDAS is mentioned then includes the following para: "Ms Huitson is not alone in having a dysfunction in the brain mistaken for...

This came up as an advert on fb: The Economist - A revised understanding of psychiatry could have... | Facebook Which I thought was interesting, given it is the economist The line on the ad: "A revised understanding of psychiatry could have profound consequences for the millions of people with...

what that would actually be useful for depends on whether some gnatty people who are very experience at living with ME/CFS at different severities can train them up and then thinking how on earth do you make the impossible fit eg when an appointment comes up that involves travel and you've not...

Yeah I must say I didn't get into this, so can probably agree on the idea of it being crazy-making, and have even been a bit cynical about when people talk about diaries. Because after all that's energy. I remember @Peter Trewhitt describing his experiment and thinking that technique was one...

Tricky isn't it. I'd describe the PEM-type cognitive fatigue / 'brain fog' (which is why that term is unhelpful and almost makes me laugh) as wondering whether there is a carbon monoxide leak and you've miraculously somehow 'woken up' after having slept in it ie still alive but nothing can...

and ripe in the bigoted to self language in an attempt to stay accepted. You might well have a point there. The difficult thing is she is working with Pete Gladwell who certainly doesn't have ME/CFS (and definitely knows what he wants given we've traced his wanting PROMS back to 2013). And...

Here's the thing with goals and what she is measuring here (and it works like research, where you have the 'research question' that then becomes so what 'questions' do you ask in order to answer that): 1. people will have their dreams (getting better to go on holiday, have a career), sub goals...

what strikes me is that where the illness is at post 2021 guideline is apparently that not much is known by the profession and certainly things like PACE and false beliefs need to be deprogrammed as are harmful and really let's be honest common-sense wise destroying of the soul to have people...

We all suddenly realise that we actually 'wait for a good moment' as much as we can until we have a shower. like others talk of second wind but it's more like a passing window within the impossible you can't put your finger on Do/can normal people just get in the shower, basically at any point...

Maybe ... that if you made them all go to a proper IMAX type action film (the issue is that ethics thing for some) vs 100 controls and then did a test that involved specific words ie you couldn't cheat and circumvent on word-finding that was done before and after the ME/CFS group would have a...

On the other hand I do wonder whether so much of the 'general hygiene/customer service' level advice has been BPS'ed that there would be some use in reminding people where 'true north' is on how to be empathetic, kind and normal and respectful is. Maybe something that isn't completely ME/CFS...

Yep. 100% agree. Those who got given even the correct information to start with the line is 'well they can talk about pacing but' and we all know what they mean. Also noone seems to know that there might be 'no treatment for ME/CFS' but the medical system has actually instructed people over the...

spot on. ALthough I'd be careful with the time theft one. I can see the behaviourists - who spread rumours about all sorts of people (who may or may not have the codnitions they assert, and for which that idea isn't likely to be accurate for most anyway just their making it up) that 'they become...

That is fascinating and makes you realise how far backwards things have gone over the decades To have been so accurate all the way back then, and from what I've realised of how precise their mapping of what they saw I wonder whether they suspected any reason for these atypical vs typical (which...

and hilariously most of them whilst ill with have been doing things for others that said others were perfectly capable of doing, but were just taking liberties - because many norms it seems to just do less or get someone else to do things 'for the sake of it'. It's only 'can't' when it becomes...

I think first came the (wrong) assumption in their head that 'it isn't very bad/important' and you see the lack of seriousness most treat us with (vs anything else) - and there is a difference between fake sympathy/pity and seriousness. Then comes their post-hoc justification (because it's...