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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...

You’ve just described decades of my life. Now I can count the good hours as those where I can prop up sitting in bed or very rarely on sofa enough I can use laptop and do normal things like drink etc and don’t feel terrible. They come to an end with a need from your body to lie back down and...

I don’t think so but can’t really think that far back without taking a bit of time to do so in detail (ME is always not straightforward). firstly my crashes tend to be me ‘carking out’ completely so it’s more like the ‘sleeping beauty’ illness programmes I saw years ago where when you are only...

Ok guven ut was suggested by the IAG member, and then the IAG unanimously agreed I imagine they drafted it swiftly and that has been sat with’the editors’ or if there is some other invented stage in Cochrane for all that time - 10months. it’s important to name someone for accountability and...

What was the date the note was promised ‘to keep things safer in the interim , given without it then it’s wrong’ because apparently proper action would take too long? is it a year? I mean that’s inexcusable if it has gif to that. Interim emergency measures have no excuse given there is the...

This sounds like an interesting approach. Would it mean that rather than just PEM it’s possible to see if there are differences when someone is on the way down / it feels like a deterioration is ‘active’ I don’t know enough about what epigenetics can cover to imagine what it could pick up and...

Yep. And even computer games tgat emphasise the strait-jacket of PEM, energy envelopes , fatuguability, feeling awful when upright a lot of the time and having all sorts of medical related obligations. Combined with being baited into wasting energy explaining to someone because this time they...

Yeah the idea that there isn’t coercion in getting results from these because of course people who suffer sometimes extreme effects for a long time wouldn’t rather just have their life made less stressful than undergo some not pleasant procedures and then get told ‘they must be doing it...

it also doesn't emphasise what a malign type of 'psychology' we are talking about under this term. I can't say I could better it (or that it would be appropriate unless a one-liner in the context and point being made), but it's one of those conundrums of quite how you can get across that really...

There is another thread on here - bpswatch I think? it gives a good sense of how potentially it is an organisation with some strange things going on meaning (sounds familiar to the recent press release on royal college of physicians) ‘maybe’ there is an issue but I don’t think it’s all re...

I forgot it’s lacrosse too. As someone who read the Enid blyton books of jolly hockey sticks schools I had a shock when I first saw university level version they wear gear closer to American football - helmets and pads etc And I think there is a lot more of a contact sport side to it than...