Maeve Boothby O'Neill - articles about her life, death and inquest

dave30th said:
It seemed like he was mainly saying that it would medicalize her in the sense that it might leave her permanently unable to digest normally because various muscles would atrophy permanently. I could be wrong, but that's how I took it.
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Jonathan Edwards said:
I am pretty certain that 'medicalise' in this context means to give credence to biomedical explanations and management approaches for an illness. That is the only UK medical usage I am aware of in this context.
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The following quotes from the latest report in The Times seem to make it clear that doctors at the hospital didn’t think Maeve had a “medical problem” [my bold]:
In March, when Boothby O’Neill was first admitted, her GP notes reveal she was at rock bottom and struggling to sit up and swallow solids. She was discharged the same day when a doctor concluded they “can’t find anything medical — feel it is functional — can drink if she wishes to. Mum not at all happy.”
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Shenton, who repeatedly tried to get her expert help, wrote in her medical report for the coroner: “Several doctors involved in her care stated they do not believe ME is a medical problem.”
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In light of this evidence it seems probable that Dr Warren did not believe that Maeve had a “medical problem” and that that was why he said that giving her a PEG would have “medicalised” her. My impression is that he didn’t intend to reveal that belief – perhaps because of legal advice – but it slipped out inadvertently.

[Edit: see SNT Gatchaman’s post directly below.]

Paywalled Times report: https://www.thetimes.com/uk/healthc...rrible-illness-that-divides-doctors-9mkzk7rxx
 
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Robert 1973 said:
My impression is that he didn’t intend to reveal that belief – perhaps because of legal advice – but it slipped out inadvertently.
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Nightsong said:
He was asked to read from what appeared to be the minutes of a meeting wherein his objection to the possibility of PEG feeding was notable; saying that her situation was difficult as it was not a "solvable problem", that PEG feeding carries risks and that inserting a PEG "would medicalise Maeve to a degree"
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So probably put on the spot and trying to back-track and cover.
 
Jonathan Edwards said:
One thing that continues to puzzle me is that, unless I am mistaken, not a single ME physician regularly uses S4ME. I have learnt almost everything about the illness, including the background research, from following the forum. When I was involved in RA and lupus I followed a lupus forum in the same way (there weren't any RA forums at least in those days).

Repeatedly I see physicians making public statements as if they have only a passing knowledge of what has really been going on. If patients are interested enough to have an in depth knowledge of their illness, why don't the medics even try!!
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Broadly, I wonder if a possible explanation might be the culture in which physicians are trained and work in? Where they are presented with the information that they need to do their jobs, so by implication they don't need to know more, and if they ever do, they will be given training courses about it.

Obviously we want a certain level of knowledge and competence in physicians, but possibly the system 'trains' them to not look further afield.

As to specifically ME/CFS physicians, a guess might be that they, consciously or not, would question why they would need to, given that the patients they see all have ME/CFS.
 
Sort of something like that, maybe, yes, @Andy, but:
Andy said:
Broadly, I wonder if a possible explanation might be the culture in which physicians are trained and work in?
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I was a physician. I worked in that culture. Talking to patients seemed an obvious thing to do. It seems weird not to. I am just intrigued by my colleagues behaviour.

Andy said:
As to specifically ME/CFS physicians, a guess might be that they, consciously or not, would question why they would need to, given that the patients they see all have ME/CFS.
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But when you see a patient in clinic everything is focused on the immediate needs of that individual and coloured by hopes and fears and the dynamics of the interpersonal situation. For big questions about the experience of the illness and how people view treatment possibilities it seems obvious to take advantage of forums like this.

And anyone involved in ME/CFS is acutely aware of how desperately little we know and how much we need to pool thinking resources. And there isn't actually any training.
 
Haveyoutriedyoga said:
Is it worth getting chat gpt to do a combined summary of all of the quotes?
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Do you mean the ones in the media articles or the ones on this thread?
I think we need to be careful either way, as people are inevitably selectively quoting, quoting out of context and may accidentally misquote, and I think if you want to use material on this thread you'll need to get the poster's permission.
 
dave30th said:
I sent my Codastory.com article about Maeve to both Fiona Hamilton and Patrick Sawer, the Times and Telegraph reporters who were both there the first three days. Sawer was also there today--I think he's attending the whole thing. I was hoping that piece, which had much more about her life before the last months because there wasn't that much information available about what went down in the end, might prompt coverage about Maeve that includes more about her than the fact that she died. We'll see.
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It seems that worked -- see latest Times article / link posted immediately above.
 
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From the Times Article /July 26 2024 [link]

"Weir believed that intravenous nutrition was an option that could save her life. By September Boothby O’Neill was receptive but doctors balked. They worried it would be fatal because of risks including sepsis. It would keep her living, doctors said, but not alive: there would be little quality of life. She declined a fourth hospital admission, saying it was “too late” and would only prolong her agony, but that she would have accepted IV feeding had it been offered earlier. "

(bolding added)

It is not clear to me if Maeve still had accepted if offered to get IV feeding at home.

So does starting IV feeding / parenteral nutrition (PN) necessarily mean going to hospital?

I realize their were concerns about hygiene conditions but wondering if it made sense to ask PINNT, a support group for people living with artificial nutrition, to comment?

see:

MSEsperanza said:
There's a person with ME/CFS on the Executive Committee. Not sure if they receive total parenteral nutrition or just partial but thought they may serve as anecdotal evidence that it's possible for at least some severely affected pwME to improve a bit (or at least prevent getting worse) with getting this kind of nutritional support at home.

https://pinnt.com/About-Us/Executives.aspx
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MSEsperanza said:
It is not clear to me if Maeve still had accepted if offered to get IV feeding at home.

So does starting IV feeding / parenteral nutrition (PN) necessarily mean going to hospital?
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Yes, parenteral nutrition is always initiated at the hospital because the patient must be monitored for infections, electrolyte imbalance and refeeding syndrome, all of which can be fatal. When a suitable feed formula (which is custom made / tailored to the patient’s needs as I understand it) is devised and that the patient is not showing signs of refeeding syndrome after a week or two, I believe that they can then continue parenteral nutrition at home, of course with close supervision.
 
Trish said:
Do you mean the ones in the media articles or the ones on this thread?
I think we need to be careful either way, as people are inevitably selectively quoting, quoting out of context and may accidentally misquote, and I think if you want to use material on this thread you'll need to get the poster's permission.
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Agreed - and looks like there's a new article out which summarises the week well already
 
cassava7 said:
Yes, parenteral nutrition is always initiated at the hospital because the patient must be monitored for infections, electrolyte imbalance and refeeding syndrome, all of which can be fatal. When a suitable feed formula (which is custom made / tailored to the patient’s needs as I understand it) is devised and that the patient is not showing signs of refeeding syndrome after a week or two, I believe that they can then continue parenteral nutrition at home, of course with close supervision.
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So the "if offered earlier" seems to be key?

Also wondering if in the UK getting a place at a Hospice was an option -- at an earlier stage for setting up tube feeding with the possibility to change to IV feeding when needed, or even at a later stage to supply with IV feeding -- just for the time needed to setup things and early monitoring?

Apologies for bad wording -- Would the equipment / staff at a Hospice be appropriate at least to initiate (1) tube feeding and (2) maybe even initiate PN?

I realize that the later just traveling to another place could have been too much at a certain stage, but still...
 
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MSEsperanza said:
Would the equipment / staff at a Hospice be appropriate at least to initiate (1) tube feeding and (2) maybe even PN?
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I don't think so, unless there are some that share a site and/or staff with a general hospital.

Hospices often receive some public funding via the NHS, but most are charities and rely on voluntary sources to cover a substantial part of their costs. They provide excellent nursing care, but most won't have the high-dependency or ICU facilities that might be needed if a patient developed sepsis.
 
SNT Gatchaman said:
So probably put on the spot and trying to back-track and cover.
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Yes, thanks. Sorry, I overlooked that his “medicalised” comment was when he was reading from “what appeared to be minutes of a meeting” (according to Nightsong’s notes.)

There seems to be an inconsistency between records/recollections of what the hospital doctors were saying at the time and what they have said at the inquest about whether they believed ME is a “physical or psychological condition”. I’m not suggesting they have lied at the inquest but they appear to have tried to conceal what they believed. I would be surprised if the coroner hasn’t picked up on that.
 
There were several occasions on which witnesses were asked to read from contemporaneous notes, then tried to backtrack on the obvious implications of what they had written. The "manipulative" comment that Prague made in her notes, and her backtracking explanation of what she had meant by that when questioned about it was probably the most egregious example of this that I heard.

It seemed to me that the witnesses had been coached - for instance each of them describes their view of ME in unusually similar terms (usually something like "a complex condition of unknown aetiology"). You would have expected a much wider range of views to have been expressed otherwise.
 
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