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@hibiscuswahine oh OK here is another one. Better safe than sorry? Frequent attendance in a hospital emergency department: an exploratory study - PMC (nih.gov) And I've put it here because in the middle of the paper there is actually a business case built out based on 2 frequent attenders (who...

This might need to be moved as I don't know whether this later part is getting off-track from the original thread, BUT I guess it is still about resource-saving initiatives, and importantly that study with the tiny sample is the reference that puts MUS as a whole section in this next one which...

Using those who refused the treatment isn't the same as having a control - they don't make it actually clear, but it seems the 'refused' is actually those who reported they didn't take it?. I initially thought as a patient that if I was feeling more unwell at a point in time ie on a downward...

There were also lots of reports regarding Do not resuscitate orders, eg this sort of thing: Doctors Issuing Unlawful ‘Do Not Resuscitate’ Orders For Disabled Covid Patients ‘Outrageous’ (forbes.com) and this: Fury at ‘do not resuscitate’ notices given to Covid patients with learning...

Would we say that these are evidence-based or even 'have a good evidence base' such as there being papers pointing to where this resulted in good outcomes long-term? I say this particularly in relation to the last lines - ie the part you note that you disagree with? And can't help but ponder on...

I'm cautious on this until I see the advice being appropriate. One half of the issue seemed to be beliefs, whether it was put in the decision or not, that the problem was functional. Can anyone reassure me with more detail that there has already been confirmation from the coroner for example...

I'm also curious whether experimental is defined as 'for those with ME/CFS' (noting that at that time there was the draft new guideline which was being held up being released by protests, so technically the old 'don't encourage them, important not to investigate' guideline remained) or 'for...

this is what is needed. I won't cause upset by putting here what I get as a response from some when I mention an individual case that has been in the news to a friend. But hasten to say they are trying to reassure me 'that wouldn't happen to you' basically because they assume there is something...

it doesn't add up with their trying to practice her sitting up either. or the notes written about her.

Seems a fair list. But I'm no expert. Does anyone know how many patients with very severe ME Alastair Miller has treated? And I guess what he had to offer them/his expertise is in?

I also can't help but wonder is nomenclature playing a part re: these brain-gut theories using that term? It seems in the gastro/BAPEN stuff there is a different interpretation of structural vs functional, than the use of functional above as per 'functional limitations' - and that is confusing...

I feels like 'what' was causing the feeding issues was obsessed over like a philosophical debate rather than treating them before investigating. I'm trying to think of other examples where this sort of thing is important and I guess there is blood - where according to medical programmes if...

Yep that one needs sorting doesn't it. It is being used as a way of effectively having your fingers crossed behind your back when you make a promise (so that you don't then have to keep it). Of course it feels like that same principle applies to the 'best medical care' for said functional...

Im re reading this through and quite tired at the moment. I note the last quote box on this post, first para, in the middle talks about concerns about litigation Lord Stevens has mentioned to the amendments. I’ve realised I haven’t found and pasted whatever comment that was from Lord Stevens...

Interesting. I read through the authors first and as they were neuro (in pain and fatigue) and rehab I was wary. I don't know whether neuro in top US medical schools are captured by the 'functional' stuff that it seems the UK has, and whether that was unfair. Anyway it seems genuinely in line...

I think this is a really key paragraph - particularly in context with the previous weeks of reporting there has been for the inquest into Maeve's death: It isn't a small number of people with very severe ME to get a response from given the level of debility (and level of care that means for...

Anyway to return to my original point: isn't this name thing a bad idea of un-thought-through consequences? No wonder everything 'new' has ended up being bunged withe the prefix 'functional' - as technically it will nearly always be 'we don't know how it works yet', as it would be pretty...

it's a good bit of lateral thinking there to mention a few other conditions and do the thought experiment of whether there could be an appropriate and useful alternative for these ie if you put them into the 'naming machine criteria' of today, would what it come out with be OK? And wouldn't be...

This certainly sounds not right and unusual. Is the norm to have these things 'open' and is that what is used for the LC one for example and how does that help and work? I'm intrigued to learn about what is the norm for APPGs, particularly if there are any that are operating really well...

Yes. And I'd add in something like 'exhaustion from fatiguability', which some people don't want to think on to understand is different from 'fatigue' but is very specifically different from that when used as a generic term inferring 'seeming or feeling a bit slow or tired' and we don't know is...