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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...

Dehydration is also on a list I saw so if it was a hot day and they were really over pushed… but still for so many out of 50 people then again is it the sort of thing that people have sbd it gets missed until it gets to a certain level of urgency 5 were critical or something so maybe the...

It’s rather fake isn’t it. And for them it’s ‘all the cliches rolled into one’. It seems like comedy a parody of a real investigative report . Would love Diane Morgan to to a few programmes on this taking the mick out of their techniques she’d do a brilliant job Or Like someone who’s to put...

It's so bad isn't it. And whilst it sounds like you manage the interaction well noone ever knows what actually gets written down about you, even if it seemed to be taken as intended at the time. WHich shouldn't really be the case for anything and is a major issue for healthcare that perhaps it...

It says and if you become disabled you can claim on our insurance how difficult is that likely to be when the people observing you fir 17 days hold all your notes, believe there is no risk and so would you be up against a big institution as well as an insurance company who mightnt be happy ...

I’m worried they keep saying long covid is something only older women get and the message if young, vaccinated people don’t tend to get it where is that information coming from that they are pushing?

Re the supermarket I was always the person that was running late or getting in there just before closing so it wasn’t the ambling for me. And it was always the checkout I collapsed at - although of course if I felt rubbish that was where I had to head and pass through (I think I’ve only...

I’m probably similar to you . And without giving away personal info know that I’ve had to rely on adrenaline however. when I was moderate then other than eg after a near miss car crash (where 5mins after I literally suddenly started shaking and had to pull over) then once I’d had to gee myself...

What made you think of neuron and it being if I’ve interpreted right about the amount of something released there ? Or uptake? I’m intrigued why you’ve gone for starting here (it might be your background, or something you’ve noticed in your experiences etc)? and the 3types idea came from...

Oh I forgot to add the latest gross thing which seems to be ‘weaponising the term hope’ and accusing people being honest that they are ill because they won’t be coerced into lying to themselves tgat they’ll magically get better it’s just the worst kind of bullying in plain sight - hiding it...

This is fascinating well worth scrolling down to this and reading in full highlights well how seemingly a boring topic governance seems to be a major issue behind lots of what’s happened to us or has influenced our situation the term capture ends up being used too as a novice in...