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This isn't specific to this article thread but I've thought of it having seen that word 'insight' again. And I think it's a point that needs to be threaded through when trying to articulate issues going on to cause what we are all trapped in. To good scientists, such as eg Oliver Sacks is one...

The thing is that now is the time the literature needs to be filled with more papers about methodology then so the ‘learning’ the AI does at least has those heuristics as part of them underlining how poor most of certain research is in I’m imagining an ‘if x,y, z missing then not...

There is obviously something about the culture that ‘stopping deterioration’ can’t be ‘the promise’ However sensible the offer re ‘reduce to preserve health’ and however much we are going feel more hellish if someone stands in our way and stops us from staying in our limits directly or...

The only solution I can see to this issue and I think it’s probably significantly behind why cfs got played is fir all charities to band together and write to all institutions doing research and all clinics insisting questions of this type are removed and telling all patients to skip any...

The mind boggles as to what KPIs ie accounting type ‘play the game focus’ these things have to have that you wouldn’t want to fish out those individuals for whom there was real and ‘big’ benefit and prove them more on how and why and who surely it’s better to have a service with a defined and...

So fascinating that on the ‘helpful’ question - which could be prone to social pressure ie politeness - there was such a massive difference between genders If many of the older males I know had been through the crud cfs patients got as ‘care’ and weren’t being coerced with perceived threats...

@“Hell I gave up that way when I got bigger duvets and my arms got weaker. So anyone trying first time might want to be aware a heavy super king duvet might need to be tried only with great caution even if milder. When I was more well and did my own I realised with the bigger quilt just...

Which type of robot vacuum? because I’ve eyed up ones on offer but have been warned there are lots that are a bit useless - I’d be interested in any recommendations

Lime Lite https://www.robertdyas.co.uk/limelite-trigger-500ml I think from My cleaner years ago (I assume - or maybe I bought it and forgot ? It’s one of those bottle I don’t know where it came from ) I haven’t had a bottle for a long time but don’t think I’ve found anything to compare since...

We absolutely need a video game I think to get people to understand ME/CFS properly. From the PEM and energy limit perspective. so that they stop misinterpreting what they see when we step up to ‘fight’ on a good day having saved all our energy by attending an appointment and having rested...

For PEM in the early days (ie before we knew what it was) many who knew me well enough would say that if I had eg an evening out then I’d end up with raging tonsilitis every time. But of course looking back I think that was just the nature of being in rolling PEM then having pushed limits at end...

On the fatiguability one I was trying to squeeze vinegar from a squeeze bottle into another one the other day as after a few seconds my hand and thumb started shaking as they couldn’t keep the pressure down needed to keep the ‘squeeze’ another common one is using arms eg to wipe something high...

Could it just be that it was a huge film at the time?

That’s worrying. A close relative with ezcema had to cover their body in soft/liquid paraffin mix several times a day throughout their whole childhood onward it was a common recommendation back then

Is it bonkers to say that what I’ve seen of what seems like a move by neurology to thinking the brain works not as part of a system with the body but like some top-down master system that only ‘tells everything else what to do’ is part of the issue in neurology being likely to be one of the...

Which ICB roles would be making decisions such as those described in some of these tweets (can’t remember/ be sure if those about ICB were quoted and if so from whom ) ?

Maybe but the state of information management in university libraries in general is a different matter I think. It seems an area where at least the better ones are really in top of things. plus I assume given business has things like EBSCO collecting access to numerous journals there is a...

Well done and thank you

Won’t charading as can’t

Agreed. And given whatever ‘compromise’ they’ve insisted on doing instead have now been evidenced by time passed as being hollow delay tactics I think they simply add weight to what that underlying action required needs to be : complete removal and withdrawal with all the various notes , old...