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oh no that's disappointing. I'm now reading your post, but to me it reads as a plea to say could you now persuade those Royal Colleges who released statements undermining the new guidelines I'm not 'with it' enough on these things to know how her mind works, and how quickly she is reading...

That’s one to flag to the ME charities I don’t mean this to sound as it does as I don’t think they are terrible - just wonder what they are doing with all the recent stuff partnering with Gladwell but from the perspective of their own existence (and therefore trustees) this is highly...

Does anyone know if Pete gladwells service was called ‘ME service’ and has now been turned into ‘fatigue service’ and when that happened and what that meant? I’ve tagged @Tal_lula as I recently re read a post which mentioned it

Thanks for the extra coding information. I’ve just come back to this one and I think it’s so important and I’m fascinated at trying to unpick what’s going on. I’m a layperson to coding but think there are some on here who know more. However I’ve worked out enough to know it’s important in where...

Yes there are indications of selective descriptions of their sample ie wheedling ave age 88 96 patients in six months claims this accounted for a quarter of patients 80yr or over who died during this time, but doesn’t define how many that was OF their sample. could easily have been that...

This smells strange to me although I guess it depends how they count one fir things like x-rays? I’m imagining most were in hospital anyway. And I also imagine because of the nature of what happens when you are ill with other things most had had falls before or ‘to’ end up there so if 4...

The thing that feels like a change recently is when it’s not just 3 callers you can’t put it down to maybe just being ‘them’ or ‘unusual’. The phone ins with lots of callers (particularly combined with other coverage being more in general at the moment) have surprised me for how good / powerful...

It ticks someone’s box but doesn’t really match the condition I can see how a misled teacher might think it’d be nice for themselves to spend 15mins listening to music all it does is add to the catch up the poor kid has to do because they’ve made someone feel better tgat they took their...

When I think of the risk of OnlY using actimeters for measuring eg PEM and of course the issue being we haven’t really got a good way of measuring what I think is at the core which is cumulative and like a residue from jog back/perfotm-agsin recovery rather than rest until fully recovered from...

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9229674/ I did a Google of these exoskeleton things and it’s a whole new world I think you might be right and @Dolphin fir posting that this area could have a lot to offer re methods and understanding of gait and signals of fariguability and other...

So really the message from them should have been more general to ‘include’ the new in being persistent and methodical at looking at the how to use them well ?

That’s a classic example of a treatment measure where confirmation bias will be implicit in measures you can’t complete the training if your medical issue hasn’t been fixed. I assume as per usual no one is looking at drop outs and as you say many will look at someone offering ‘that bit’ fir...

Wow the word/phrase ‘unlearn’ has been used That is so significant I tend to talk of the need for ‘deprogramming’ eg for behaviourists, BACME, old clinic staff … and so on down the line particularly noting it is needed before anything can be done - whether that is that there is a ‘fit’ to...

One caller used example that a nurse or HCA poured water over her when she was in hospital because they didn’t believe in the illness’

Ricky gervais joke being mentioned as that sort of thing contributing to the stigma

That’s my point - it’s ’this Area of physio’ the one that’s decided to focus on behavioural and fatigue is there a role for that - and I think that’s an important question Because I assumed not when guidelines changed and their behaviour since has underlined it might be a different physio...

Is there even really a job for this area of physio anymore in me/cfs anyway. even if you go with the ‘make sure people don’t overdo it’ or study stuff then exercise physiology / scientists are more appropriate. And if it’s the nuts and bolts of adjustments then OT.

100% agree not great today but there’s something in reading your post where I thought that’s it! That’s what we need a page specifically on I’m watching the bits come together on this and wondering why / how eyes must be being deliberately closed to it all it’s like someone who says ‘I told...

Me too. I darent as I’d get eaten alive or might say something slightly wrong due to nature of talking when exhausted huge admiration to those who are both up to speed enough and able to be on their toes in a conversation- it’s so frustrating how we are so far it would even be lots of work to...

agree pacing needs to be dropped and ambiguity needs to also be stomped on when it’s deliberately introduced by others ‘pretending it’s by accident or misunderstanding’ I’d use the term conservation or something even better and more specific that at least underlines we have less. Which is the...