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This really is off topic, we have all of this info on the Maeve inquest thread which is probably where this should be. I think my point is quite straightforward- the reasons given at inquest by the medics were that the infection risks and risk to the stomach were too great to use any/all other...

I distinctly remember the “non-working stomach/use it or lose it forever” debate, and I didn’t think that referred to PEG (or NJ or PEJ) If the PEG can’t be done due to hygiene (assume the same issues with PEJ and NJ) and the TPN can’t be done due to stomach becoming useless, what else is...

It was discussed at length in the inquest. Can’t consider a PEG due to lack of washing, can’t consider TPN the stomach would stop working, I don’t recall but it’s there in the reporting, Dr Roy seemed very strident.

Irregardless of capacity they were unwilling to try any alternatives, really it’s a moot point. I assume, and I might be wrong, that the original poster who brought up sectioning was assuming it would lead to some kind of feeding via TPN (in the vein) but actually the Drs had (after the NG...

I’ve got a “zinger” for unsolicited wellness advice “oh really? No that’s not a study I’ve heard of, do you know who carried it out or published it? Oh it’s on the internet? Have a look for it and send me the link so I can share it!”

BIB is the nub of it, in my opinion

Based on what was said at the inquiry we do

I think it’s a combination of that, mixed with a misunderstanding that ME/CFS would lead to death in any case. I really think after reading about MND/ALS these Drs thought the ME would cause the body to shut down, and stop functioning.

This is the point I was trying to make. I think wording it as “what would have happened to Maeve then” was inappropriate. The doctors were clear that they were not going to try anything other than the NG tube, so what difference would a section make? It’s really a rhetorical question as they...

All the more reason you’d expect Sarah to explain in succinctly in plain language. Rather than a list of expert jargon and a whole sentence explaining how they did something not here, but on a different project? I think PEM is separated because it can’t be “fixed”

What that?

It’s all part of a pattern of very defensive reactions though. Look at the tone without that part!

I don’t think it’s anything “worse” than setting up a framework which will generate positive outcomes for NHS commissioners. But it could be more sinister I suppose. It comes across as “the tail wagging the dog” The fact that nobody can give a concise, relevant, meaningful and substantial...

Wow. I’ve said before, there is a legal recourse somewhere in this case, and I suspect it would require lots of money (crowdjustice funiding perhaps) and a very specialised lawyer, but I personally would support Sarah if she found a way forward. Although I’m not wealthy so that’s no great...

I’d like to just highlight the massive own goal of “the assessment does not refer to PEM, there’s a different assessment for that” PEM being one highly specific feature of ME/CFS but also one which can be disregarded when assessing how ME affects you? Is this real? I have no words.

I don’t think it’s actually worth asking Sarah Tyson anything, partly because of the way she answers (long, but incomplete) and partly because of her brusque style. Perhaps the same questions could be put to Peter Gladwell, or the ME Association?

Ok well we can all use technical jargon to describe something that isn’t very good. Anybody able to translate? she didn’t answer all of the questions did she?

I guess if you can “think yourself better” it makes sense that other sick people can “think you sick” too. I didn’t realise my ME gave me psychic powers! Amazing. There should be more promotion of that.

It’s the lie Miranda is promoting though. But she hasn’t got any answers. But she has written a book where she explains extensively and in detail how she got better. Sucks to be her when the inevitable “good vibes only” -proof crash happens.

Nonpaywalled https://archive.ph/aLlkO