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Yep they think rather than ‘measuring the gap’ directly they are going to ‘calculate the gap’ but their questions aren’t holistic enough nor specific enough - what level of change and type of change could this question actually pick up?

Says a lot about what I’ve seen the ‘system’ looks like. intriguing because there’s as much chance they all had the same thing but different areas where clinics cared about different things. Where are the ones who ended up with an FND or hyperventilation or whatever some other places were...

Or not having much choice - could there be a connection for some in having to push through due to their job vs those who had work from home type things at the time I think it’s interesting that as makes sense to me the HR is showing difference before the number of steps only starts to be...

That’s interesting that a similar timeframe around the 200 day 9-10month mark seems to be coming up for all of these including steps. … thinking of Paul Garners experience for example

You see I don’t mind this - it makes sense that we don’t want to be requiring people to give over live monitoring data if their lives to an agency. And all the calibration stuff from different apps. so filling in questions where peoples answers can be informed by their own app and experience of...

There is a big flaw because I would need a ‘very good day’ to even think about filling something in even with help. even when I was moderate my PEM days I was fast asleep or in huge amounts of pain desperately trying to rest. And the difference was huge between just had a week of rest days and...

I’ve no idea which if the specific ‘terms’ I’ve got but I do know I have this all the time not just in PEM . Worse when more ill as most of most days I can’t just sit up and a lot of time I have to be horizontal it’s hard to describe why right now. When I was less ill if I talked to someone I...

Precisely. It could be like when Carson, stone etc used the hoover sign to identify a group who had FND then tested whether the ‘Hoover sign’ was a good differentiator by seeing if it identified those same people from those who ‘didn’t have FND’ . where is the measure that is definitely’the...

I’m just seeing a con in front of my eyes because I’ve done these things of measures properly in my work before and analysed how they flow through properly (thank goodness it was another area where not only was I allowed but these flaws being kept an eye on was expected) because measures can...

This is such a huge concern and it feels like none of the key players are bothered tgat it’s aiming to redefine ‘what the illness is’ by it only being ‘better or worse’ the measures THIS black box method has apparently decided upon it feel like the cup and ball trick whether those doing it seem...

i think the cpet more significant than that and if it had been a reliable option then me doing that whilst moderate would have saved me being out through suggestions of going to the gym whilst doing a more than full time role. and the walls colleagues dragged me on because of their own issues...

And surely the comparison before you make those kinds of recommendations is to check that the disability level isn’t being made worse by the treatment long term vs what it would have been with a rest or step back approach when you think about the care bill some might have ended up with in...

So just in case they are one of the misdiagnosed or the coercion to keep saying you feel well (you are in that need of hope) for how long? vs the risk …. Did they ever even look at the risk?

My goodness when you think about what this did regarding coercion into harm. do we think they were aware about the significance of that one line? fir a treatment that wasn’t checked for harm nevermind the impact on the actual medical condition just by having longer follow up than a few...

Ps when we think about what clinics could actually be doing instead of all the pseudo anti psych stuff they’ve padded their documents out with … there is much much when you scratch the surface on living with this illness that needs people who are interested to learn to understand. It is so...

To feel that you don’t disappear when you get more ill , like the more ill something makes you the better for the person who did it because ‘noone will believe you anything can be that bad’ and I’d appreciate it allowing patients to add what they see as their significant events medical history...

It’s a number of catch 22s there for me. I’m rarely able to leave bed nevermind house but have medical appointments I have to attend a lot reducing walking with these seems sensible but not if I have to lift something out of the car or wait standing feeling fuzzy whilst someone else does...

:bawling: So this is research done on people who are well and definitely not ill with any of the things this is supposed to inform how insulting but how stupid - is this about their ‘preventative medicine’ crud saying … well in well people they found if they were traumatised less they had...

I agree. But do make the point that in Uk ulcer treatment or people who are young and get barn door ulcer symptoms are seemingly pushed down a pathway assuming ‘it’s stress’ first - I say first because quite quickly they end up in hospital visiting blood and it seems investigation there goes...

Spot on