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

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.
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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.
 
MrMagoo said:
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!”
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Thinking about it more, what conditions do exist which manifest “real symptoms” because you think you’re ill?

Munchausens/Facetious disorder is not counted as that’s manipulation rather than true belief you have the illness you’re play acting.

Health Anxiety can cause issues maybe?

Any others?

Because maybe we should be loudly and enthusiastically congratulating these BPS evangelists on discovering a new branch of science. And this discovery must just be the start!
 
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