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Thank you. It is very good I think I particularly thought of BACME at 57 mins in when there was a list of tasks they had tested and shown they cause ME/CFS to be over their limits. But it is so often the case that showering isn't one of these... so strange given I'm pretty sure most I know...

there is a big issue isn't there where the idea of both exercise and any old thing as a pretend psych 'therapy' being helpful for 'fatigue' having become a truism in the medical profession and pushed into other vocations. It is like the untouchable as if someone is suggesting smoking is good...

Anyone see this?

Do you mean you actually hear a creak? Has anyone else noticed this? when i directly exercise certain muscles then when they are at the end of their whatever /out if whatever they I get 3 tugs in quick sequence. Like someone is pulling a rope straight letting it bend then tugging it again...

I agree, but with the caveat that I think we need to be careful about the cherrypicking/fishing for that would happen if we just threw data out there, given we know about the latencies and patterns but I don't know what might be manufactured if someone took a few good days vs bad and cart before...

Agreed. And it has just reminded me watching this (I think the last line about CBT, plus the bit about Chalder's misuse/misunderstanding of the term 'normal') that we need to begin requiring that it is underlined that just because Nice NG206 didn't throw out all CBT does NOT mean that it didn't...

To me, is it OK to go at the list / concept of testability from a different angle and suggest that it needs to be something that can explain or accommodate the idea that with sufficient REST - but that being in ME/CFS terms so a lot of rest when someone needs it and until they naturally feel...

I'm trying to add the bits together that might relate to muscle here, because the pain I'm thinking of I don't think is 'brain/nerve-related'. For me I think the earliest and most obvious was always the calves. Full-on deep soreness to a level I'd never felt before, and definitely not caused by...

ON point 1. I was thinking similarly on the more women than men affected stat too, based simply on the history of it being used as a dumping bucket when CFS (and probably still now). I thought of autism and women. I'm also all too aware of watching over the years on social media people trying...

I'm hoping this isn't too much of a sidetrack but this comment made me think of having recently read this (as I thought of clock genes / clock cells and this came up) and thought if it is correct then it begins to undermine the simplistic 'hardware-software / brain controls the body one-way...

Yep. That one seems to fluctuate for me significantly there is probably a term of like when the illness is ‘live’ I’m reaching for ie where I feel like my body is on a free fall/ downward situation and definitely if I’d had an illness exacerbate I remember @Peter Trewhitt doing a good post...

Yes. So you can see how the initial incarnation vs the additional amends takes it less and less from whyever it was signed off. But I get the staffing changes notes too. It is interesting to hear Action for ME said something / changed their mind and backing ? I’m intrigued given the current...

Sounds like the chimp felt the task was to complete the puzzle and then they would get the reward, whereas the child had been put in a different 'task' which undoubtedly included social pressures/coercion/behavioural psychology and so knew they also had to factor in the risk of 'displeasing'...

Wow, you can see where their move towards 'fatigue' being their big thing they realised they could 'own' and make as lowest common denominator / black box as possible over the years as a 'school' basing its papers on manifestos and a focus on lobbying to ever weaken methodology 'robustness' (if...

:)

and of course your scale. Before you get ME/CFS you don't know fatigue can go higher than that time you ... and in fact I'm not sure that those who haven't had it or something similar would even think to equate 'being very ill' with 'fatigue' ie do most 'norms' use 'that time I had...

Yep this is just a long anecdote exampling how there are some who still don't/won't get that there is another definition of 'can't' .. which is that arrogance that has made us all very ill by people spreading misinformation about it ... which is that when we force ourselves we can indeed hurt...

Another classic: "It is important that you practise walking with the nurses to and from the toilet/bathroom where possible, to get you back into your normal daily routine. This will help to build your strength and confidence." Doesn't sound like it is based on much more than some 'judgement'...

I've found this elsewhere for post-op for something else. I think there is more going on and don't really know from the phrase 'research' whether there is anything even evidencing that properly. There is a belief-system issue potentially just in 'belief-systems know best'. As we know, this sort...

truth is I think there are probably a lot of others it doesn’t work for who are just more able to walk away and not have to say anything, it’s just the coercion issue used on CFS means we’ve been the poor so and sos they got obsessed with because they had to say it