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

I think the “feel like…” is corporate speak.


It is useful in a 1-1 or personal situation to acknowledge someone’s sense of a situation and/or their feelings.

It is passive-aggressive in a corporate/formal situation to minimise someone’s complaint as a “feeling”. It recognises that point of view, but makes no admission of guilt in causing the situation which it’s claim/could claim led to that feeling. Keeps them out of any legal trouble.
 
Maat said:
The above contains the text of my complaint, the same day the Regulation 28 Prevention of Future Deaths report was issued following the Inquest into the death of Maeve Boothby O'Neill.

This following is copied from https://www.s4me.info/threads/uk-of...livery-plan-process.40610/page-10#post-585043


This is the reply I received, via my MP, from Andrew Gwynne MP, Parliamentary Under-Secretary of State for Public Health and Prevention of the Department of Health and Social Care today. It is dated 31 January 2025. Andrew Gwynne also has responsibility for long-term conditions.

My initial reaction would breach forum rules. So I will take some time to consider my response.

Here is the content of the reply from the DHSC:
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I too will refrain... as there seems a disjunct? between 'reality' and (political) rhetoric!
 
Apologies. I came across this and started to write. Am crashing so not completed.


By chance I came across our unread copy of the Sunday Times from last Sunday 23rd Feb.
In it was a report by Katie Tarrant of the inquest of a young female soldier who had killed herself following sexual abuse and harassment.

The "coroner read his scathing conclusion over two hours on Thursday..." ....

" It is unusual for a Coroner to deliver such a lengthy and detailed conclusion, and he was only able to do so because the inquest was listed under Article 2 of the Human Rights Act, used when it is suspected the state has failed an individual in their death." The article reported that the deceased's mother who pushed for this.

Of course I thought of Maeve. I don't know under what power her inquest was held.


Later in the paper was an article by Sean O'Neill, headed "If we cannot learn from fatal errors, families relive tragedy for nothing." Sean drew attention to the coroner's power ( used in Maeve's case) to write a PFD report whereby areas in healthcare, medical research, education and training could be pointed out where action could be taken to prevent future deaths. He reports that the written responses to the coroner have been underwhelming.
I am crashing so attach a link, paywalled, to the article. He describes the coronial system as greatly in need of reform.

https://www.thetimes.com/comment/co...families-relive-tragedy-for-nothing-5n8fxmgq8

There have been tweets discussing Sean's article for anyone on twitter.
 
I am not surprised that written reports to the coroner have been underwhelming. They will all have come from people with a vested interest in not rocking boats.

I seem to be the only physician trying to make some noise about this. I am setting up a thread about a video. No doubt it will pop up on your menus.
 
Maat said:
The above contains the text of my complaint, the same day the Regulation 28 Prevention of Future Deaths report was issued following the Inquest into the death of Maeve Boothby O'Neill.
…..
Here is the content of the reply from the DHSC:
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“People with ME/CFS deserve the most appropriate treatment and to be confident that the NHS can offer that treatment. I recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system.”


I remember reading this response (and other use of very similar words in Minister responses) earlier this year. Sorry, I have struggled to stay up to date on the forum in the last 6 months, only dipping in very occasionally.

My response on twitter to John McDonnell MP in March 2025 when he received a similar response:

https://twitter.com/user/status/1897934142009942110
 

M.E. Awareness and Reform
The Times

The Times had been reporting on ME (or chronic fatigue syndrome) for years, highlighting the stigma faced by people suffering from the misunderstood disease. But the death, in October 2021, of Maeve Boothby O’Neill, daughter of senior Times journalist Sean O’Neill, gave new impetus to the campaign. As the inquest into Maeve’s death app...

Read More
 
And yet nothing will be done. The gastroenterologists are digging themselves ever deeper into the belief of a 'third group' of functional patients who need not be kept alive like people with either physical or psychiatric illness.

Miller is still at the Royal College of Physicians.

There is work to do.
 
Jonathan Edwards said:
And yet nothing will be done. The gastroenterologists are digging themselves ever deeper into the belief of a 'third group' of functional patients who need not be kept alive like people with either physical or psychiatric illness.

Miller is still at the Royal College of Physicians.

There is work to do.
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Is there any way that we here can help with that work?
 
Jonathan Edwards said:
And yet nothing will be done. The gastroenterologists are digging themselves ever deeper into the belief of a 'third group' of functional patients who need not be kept alive like people with either physical or psychiatric illness.
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Oh, no, they have moved on from that. Haven't you heard? They're now disorders of gut-brain interaction. Or whatever. For now anyway. Next month, who knows? Maybe upset or nervous tummies will be back in fashion.
 
Chestnut tree said:
In my view we need to copy the quack’s media campaign. Only their side is being broadcasted everywhere. That’s why the population at large (most drs included) have no idea of the true nature of ME.
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Their strategy only works when you have the balance of power. They have the totality of power. We can't copy any of what they're doing, and this is why it's so easy for them, they can just laze their way into parroting the same nonsense and still get showered in money and praise.
 
rvallee said:
Their strategy only works when you have the balance of power. They have the totality of power. We can't copy any of what they're doing, and this is why it's so easy for them, they can just laze their way into parroting the same nonsense and still get showered in money and praise.
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we do need to coordinate better though rather than have lots of people saying all sorts of disparate things 'because any awareness is good' not realising that causing noise actually reduces awareness and increases distance to getting there, unless things are set up to juxtapose (ie if people say slightly different things because they dovetail then that dovetail needs to be elucidated so it doesn't look like it contradicts or everyone 'just disagrees') which to the laypersons appear to contradict each other like we cant decide vs the bps refined set of lines and stories.
 
bobbler said:
we do need to coordinate better though rather than have lots of people saying all sorts of disparate things 'because any awareness is good' not realising that causing noise actually reduces awareness and increases distance to getting there, unless things are set up to juxtapose (ie if people say slightly different things because they dovetail then that dovetail needs to be elucidated so it doesn't look like it contradicts or everyone 'just disagrees') which to the laypersons appear to contradict each other like we cant decide vs the bps refined set of lines and stories.
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I feel like we need a “zinger” of a phrase, if there was a catchy, snappy, undermining retort it would go viral and shut down this kind of thing quickly and easily.

I can’t think of one. I’d probably go with “not this magical thinking solution again!” Or “I’m not “manifesting” these symptoms, so I can’t “think” them away!”
 
bobbler said:
we do need to coordinate better though rather than have lots of people saying all sorts of disparate things 'because any awareness is good' not realising that causing noise actually reduces awareness and increases distance to getting there, unless things are set up to juxtapose (ie if people say slightly different things because they dovetail then that dovetail needs to be elucidated so it doesn't look like it contradicts or everyone 'just disagrees') which to the laypersons appear to contradict each other like we cant decide vs the bps refined set of lines and stories.
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Yeah one example is often activists will use “ME/CFS is rare” as a kind of easy explainer why it’s so neglected without diving into the systemic stuff.

But then we have others calling ME/CFS things like “The most common disease you’ve never heard of” etc. So to people who read both it probably just feels like a lot of contradictory noise.
 
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