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I think the hospital’s view is they did everything they were able to then she discharged herself against medical advice. We know exactly how this has happened and the historical BPS cancer in the NHS and Government. But that’s not for the Coroner, what’s for the coroner is how did Maeve die...

I don’t think she can see it as an isolated tragedy as it’s clear the NHS has no services anywhere for SVS ME, and medics, GPs haven’t been trained.

It seems that there was delay in starting end of life care for Maeve in August/September due to the safeguarding concerns. Dr Shenton wasn’t able to give higher strength pain relief during this delay.

This coroner, like the majority of them, is a barrister. She’s already mentioned something about the legal arguments for Negelct being a test in the legal sense, not the everyday use of the word. So she’s going to look at things form a legalistic viewpoint which makes it hard for us to guess as...

I’ve had a look at tweets but won’t be up to doing anything until this evening. Dr Shenton answers seem a mixed bag… The district nurse was giving evidence and it seems she called in to check for pressure sores one day, but this evidence involves a lot of Sarah asking (reading into evidence)...

It’s closed to new referrals from outside Leeds since 2022 click the link on that page “for referring clinicians” presumably it was closed earlier as Dr B? Contacted them and they said they’re not accepting patients. The classic phrase ”we’re not commissioned”

https://www.thetimes.com/article/9c78a59a-5469-4174-bb0a-2c0cad933f7b?shareToken=c0f3f33e973e5fc0db81e3ee4500844d The times (no paywall)

In these modern times, you shouldn’t have to consider sending a patient with VS ME over 200 miles to Leeds for a bed. You should be able to have a bed at the nearest hospital which is suitable, with appropriately trained staff and protocols. The leading consultant can be based anywhere, or be...

He seemed to think there was at Bristol, and Leeds where he sent the patient who later died. But the original question was about why didn’t he ever transfer Maeve to that ward he talked about, which is what I replied to.

correct, there was reference elsewhere to her previously eating mashed up baked potato with added water, spoon fed from a cup by Sarah, then later being fed by syringe

I’d also say we’re not going to agree here on what ME is, there are various theories and it seems that there are differences in how medics interpret words, to how lay people do.

I think Whitney Dafoe also tweeted that it seems if he’d been in the UK he’d certainly have died.

We don’t know how it happens, but we can focus on the fact that it does happen. And people need to stop using “fatigue” even Beth the dietician said Maeve became “extremely exhausted” from having her obs done. Basically taking blood pressure or temp, looking in her eyes made her even more...

Report in the Belfast Telegraph (no paywall) https://www.belfasttelegraph.co.uk/news/uk/inquest-into-death-of-ni-mans-daughter-with-chronic-me-reveals-she-knew-she-would-starve-to-death/a2016551848.html The Independent (no paywall)...

Very few people, and very few medics, especially those who’ve never met a person with ME, will be comfortable taking their cues as to what’s “too much effort” from the patient. That sets off “manipulation” alarms. It’s also like the old “you’re the expert in your condition” medics say, until...

I’m only repeating what tweeters have said, which means context gets lost, and specific wording is a bit unreliable, so don’t put too much stock to it, on my posts at least! I think it could have meant “locked in to the NG tube” physically (it’s down your throat) equally it could mean...

Just to say, there isn’t a CFS ward. There used to be one a long time ago, which is what he was referring to. He was basically saying we need that type of ward. The UK does not have any ME/CFS wards or beds, anywhere, at all. Any NHS ME/CFS clinic is an outpatient clinic, and most don’t treat...

Last part of Sarah’s evidence in no particular order, thanks to ME Advocates Ireland for the tweets and Paul R Keeble. Bold emphasis is mine. Final admission being discussed Sarah much more planning was needed before that admission. Maeve was in a starvation state and without understanding...

Maeve - I’m not doing Graded Exercise, which is what testing sitting up is

Not necessarily in good order. Bold is my emphasis. Sarah and the Coroner. coroner asked Sarah what her expectation of the March admission was. Sarah describes the difficulties sitting up and chewing. Maeve was mostly bedbound. It was difficult to get enough food into her. The loss of chew...