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I'm massively confused here... so the NHS & DWP are developing an app to do (in DWP case) some nefarious thing under the guise of 'assisting' people like us. And ELAROS are the app developers, who're walking hand in hand with MEA & their PROMs project in order to do it??? Is that whats...

Wow talk about inaccurate.... For a start it's NICE 2021 not 22, if you cant even get the date right... And, quite apart from anything else, it is morally wrong to present it as if NICE as saying "keep people in bed in a dark room, tube feed, free from light or strong smells"? That presents it...

lol indeed :D For me, yes it's a pretty good judge, EXCEPT when I am stressed. When in fight/flight mode - when really scared or angry my 'gut' can simply no longer be "heard", it just goes offline for a bit, until I calm down & then it screams really loud. Couple that with the fact that i am...

Just spotted this… im about to give HR monitoring & step counting a go. The main thing Im hoping/expecting it to help with is this… the effects of adrenaline/cortisol make me feel much better - when I’m in fight/flight or am stressed I have the illusion of being able to do more, &...

what about sound/light?

so it would easily explain why people with very severe ME\CFS have such acute sesitivity to touch ?

Hi Jesse thanks for bring up my question again & asking it in a more useful way that’s exactly what I was trying to ask! and thanks Jonathan for answering am so encouraged by yr response I always thought the significant positive impact of stress to be so odd & the way PEM will be delayed (for a...

This may be a total red herring in the context of this paper, if so apologies, but I always wondered about this, mainly because the effect is so stark (for me anyway)... Does any of this modelling allow for the improvement in function/reduction in pain etc, that I & others experience with the...

I am not well enough to read the paper, and wouldnt be able to understand much of it even if i were, I'm sad I cant join @Sasha in her crash-course in immune biology, I'm so interested. But this summary makes sense to me even if I only vaguely know what each element means, so thanks to @ME/CFS...

Thanks @Utsikt

Not able to read it yet but it looks great @dave30th I particularly like the illustration… do you know who did it?

from Dr Shepherd at link Its obvious why... They are 'expected responses' - ie how the assessor chould expect a person w severe ME to respond to a question... so it'll have been redacted to prevent fraudsters simply saying whatever it says theyre expected to say! I hope they stay redacted!! at...

wehave a thread on it somwhere

yes

Indeed. I was unwrapping the lovely green paper from a bar of Green & Black's organic smooth mint this afternoon & thinking perhaps it should be renamed 'hypothalmic blend'. I reckon their corporate owner Mondelez would be the perfect backer for a Wellness offering. I mean all it needs is a...

oh come off it... mine instructs me to give it greens very regularly... green aero, fry's chocolate cream, chocolate limes,bendicks, viscount biscuits... a wide selection of greens actually

precisely agree. i think it one of the best, am grateful for it

and thus, we get a sneak preview of where the FND dx fanclub will go, should any genetic predisposition for ME/CFs show up in Decode or be further elucidated via other studies

yeah, me too. I hate that you lost that thing you loved PrairieLights. For the first time in my adult life I had found a job I loved. I woke up every morning genuinely looking forward to my day, sometimes even excited. And even a job I hated would be 1000x better than this! I'd love to be well...

love that, so true!