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Today I'm increasingly despairing of how the dangerous issues with those very severe haven't had someone/anyone realising it is a crisis of safety. And am so conscious of the 'moments of truth' situation that I think ME has which is where really I think the best and most urgent thing a service...

I think this issue and what is or isn't need for this (new?/ extended?) remit is worth circling back to as a discussion. I'm trying to mentally work out (difficult here because I tend to be pictoral and like a good diagram) what that means this underlies/underpins and where this sits . Is this...

Interesting list. The drop-out issue is one that fascinates me for the CFS research: using the treatment itself as a filter for survival of the fittest. I can't think specifically of what I'd state we'd be looking for there. I'm assuming some of the focus is on outright 'made it up by filling...

Just looked up: A new community rehabilitation and reablement model (england.nhs.uk) and not feeling hugely reassured by "Guiding principles The guiding principles of the new model are: • People requiring community rehabilitation have access to the appropriate level of expertise, based on...

so has this anything to do with the working groups supposedly happening/related to the APPG and following up on implementation for the Nice guidelines? or is it a case of whilst that gets procrastinated then the same people in NHSE just roll out what they wanted to do with us anyway and then...

One thing that intrigues me in discussion of the 'rule-in' signs and calling them 'positive signs' is whether they are actually rule-in and not rule-out? Wikipedia description of Hoover's sign: "Hoover’s sign of leg paresis is one of two signs named for Charles Franklin Hoover.[1] It is a...

Indeed - good spot/point What’s the cliche about the wheel turning or something? Just history repeating same error

Exactly

Maybe, but he does seem to be looking at this from a good number of angles. I'm reticent to without a thorough dive through everything sign off someone as thumbs up but at least his lists of references aren't 'limited'. He mentions that these portable monitors now being readily available has...

I'm intrigued because from the outside it seems like there is maybe a 'hi-jack' (I think someone else used that term, I hope it is accurate) of a term that has been around for quite a while (?) and does need taking seriously by the right people with the right intentions. Which I suspect is...

Or 'bombast'. There are many professions/jobs where the instructions given, certainly by some training back in the day, was that appearance and staying in command was all. For example teaching and being at the front of the classroom you will still find some who have been led to believe (for...

I was intrigued by the second half of the first quote here: Obviously the word 'confident with their diagnosis' is somewhat ambiguous just due to the nature of the word, but can be interpreted when taken with the line 'misdiagnosis of FND is detrimental to prognosis' to perhaps be seeming to...

Yes! Brilliant news if so.

If so its significant fir two reasons off top of my head: 1. any inference by authors that ideas of pacing or potential harm had come from anything ‘internal’ to the pwme, or were a concept related to ‘a condition’ vs it was being ‘instructed’ externally by someone in charge (or said as a...

But there is also in eg marketing/business literature discussion of saliency and involvement. None of which are any insinuation on the 'emotional processes' of the individual, just state that the item in question as presented is more relevant to some than others. I doubt this goes near...

To be clear what I mean by this is that this / these types of questions breach basic guidelines of any research (whether you are market research regulated or any other subject) of making sure that any question you ask must be one that the respondents will be able to /qualified to answer the...

If the researcher turns out to not be doing anything special method wise (really bad if these were all used fir different contexts and aren’t even being checked if it transfers) or more appropriate to the pwme than the nhs would for these and indeed might be getting less oversight (surely the...

Interesting point re a mindset that is applicable to so much who knows whether if the approach had been to see it as a symptom and be monitoring all blood pressure then having (what nhs seems to infer to the world is some sort of wonder database of peoples illnesses) actual monitoring of what...

I would underline ‘do without payback’ and ‘deterioration’ and the thing is that currently we are still in a battle with behaviourist that really only we can tell them what that is whereas underneath they STILL i think have beliefs , flase ones which the Nice guideline was clear was the nub of...

This well summarised there is an important question to be raised with the MEA here and these questions/the answers to them are useful in knowing what is really going on and who has been driving this vs who does have any power to change this if the brief suggested anything different re promises