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Reads to me like they took what they offered other serious conditions removed all the parts where they offer treatment, support, adjustments, expecting anything that would mean you would recover and then were too lazy to even adapt the bit where staff ‘teach you to be positive about your...

It would be interesting to know feedback as to whether this is a good service or BPS heavy? I’m guessing it is Alder Hey from looking up the authors? I’ve noticed the mean length of symptoms criteria they noted had 42months for me/cfs vs 10.7 fir LC I don’t know whether that is due to them...

:) Thank you - will do.

Indeed - and the whole fatigue thing itself has been made into being seen as mental health somehow which is an extraordinary feat in itself. it’s made for a weird communication cul de sac

and shouldn't it be encumbent on the person trying to claim no capacity to show that they haven't bombarded them with complex questions, or failed to wait (if something isn't an urgent issue eg following an accident) if someone is saying they are in sensory overload at that point and so need...

And there is something mentioning PEG in Covid patients here from May 2020: covid-19-and-enteral-tube-feeding-safety-13-05-20.pdf (bapen.org.uk) I'm flagging because it notes other guidance they might have received at the end of this first para. Link...

And it is interesting when looking for where 'PEG' is, as some have mentioned it here as the missing middle option. It seems to be under the enteral feeding pages. But these also are marked with due for update, but are less easily readable as the options are organised into hyperlinks by...

Oh hang on. I've just googled and ended up with the following BAPEN page: Enteral and Parenteral Nutrition | BAPEN This seems like a page 'above' ie that someone might find before the one for just parenteral nutrition. And it is a lot stronger in its warnings about how dangerous PN is and how...

Interesting summaries as it gives the gist someone who saw the whole thing took from it. The "lots of Maeve believes" stuff just reminds me of the Chalder/Gerada/Maudsley video to train GPs: Old Maudsley GP training video | Science for ME (s4me.info) I just watched it back and at 8.38 it...

I know nothing about this area but just clicked through on that link and read the following: To me this says that intestinal failure is defined by a reduction in gut function.... So all this stuff about 'structural' vs 'functional' we've been hearing .... Do even the list of Type I-III even...

exactly all this. How to get past the people looking at you but not hearing, just looking for the odd word to pin their thoughts on and pretend it applies, I don't know.

OK maybe that sounds like an interesting 'loop' if there is no other pathway that can go under . And seems to correlate with terms like neglect and self-neglect that you see and hear. When to a layperson you wonder if that's the accurate term for the situation. - a bit like the 'functional'...

is there any proof that it is even the right think for eating disorders treatment given I get the sense that area has a massive issue with disregarding the testimony of patients, and probably aren't doing controlled tests for specific situations (to see if that works or just causes more...

There are a few issues with this. Firstly exhaustion is the big factor it seems for many. Which leads to a 'can't' - and things like the ridiculousness of someone taking ability to swallow water from a sponge once as if it meant they 'can eat' both sufficiently to survive (and digest) , but...

I think they might have been onto something here zeroing in on these for questions. The olde 'treat the person not the condition' is of course just a catchphrase HCPs chant when not meaning anything, but I'm sorry it also makes me think of the 'got to the exorcise the bad thinking' type...

the locked-in term is interesting, was this @MrMagoo used by Sarah to describe Maeve fearing not having a chance to go through a plan of various contingencies in case she wasn't able to communicate in future ?

Could I get yours and anyone else who might have some perspective on it about the comment earlier on said by a witness that was something along the lines of 'it was unusual she had mental capacity because brain fog normally means many/most with severe ME don't' ? I find this comment incredibly...

There seems to be a lot of trying to justify 'beliefs' by muddying them, toning them down and trying to avoid dotted lines being drawn between actions taken/not taken and potentially gut instinct stigma/ideological paradigms. Does anyone know about how inquest work and whether for example...

This particular document has been mentioned in the following thread: The Canary: The two leading UK ME/CFS charities are linked to an organisation fomenting the psychologisation of the illness, 2024, Hannah Sharland | Page 2 | Science for ME (s4me.info) I mention in case it is useful to bring...

I hope it isn't too obscure to use this example but if people have a pet that turns its nose up at a particular food, or starts getting problems like diarrhea or increased wind then at no point do most people think its more than 'the food not agreeing with them' and 'maybe a health/illness...