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

This is about the founder of #ThereForME in The Times (London) today, by the Health Editor Eleanor Hayward, prompted by Maeve's inquest.


My husband is bedbound with ME at 37. I grieve for the life we had
Karen Hargrave is campaigning for better care for people with myalgic encephalomyelitis after her husband’s life was ‘decimated’ by the debilitating disease that has no treatment and no cure

https://www.thetimes.com/uk/healthc...n-running-husband-mute-and-bedbound-76jpzfzk6

Archive: https://archive.is/5EuCt
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To discuss this article go to this thread where it has also been posted:
#ThereForME campaign / Building an NHS that’s there for Long Covid and ME
 
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shak8 said:
Yes.
Doctors have a sworn duty of care, to try to save the life of someone. They choose, especially for a young person, a treatment that will solve the immediate life-threatening problem, such as TPN (even with the inherent risk of line contamination, sepsis, rehospitalization and even death).

Doctors throwing their arms up in defeat and confusion because the patient doesn't conform to previously established clinical guidelines, is a failure of care. If it were their daughter....what would they do?

If she were a cancer patient, then somehow they would just have proceeded with nutritional support by any means, I believe.
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They would yes.


Although there are occasions where HCPs do trust their colleagues and lose their children to the watch and wait approach against their own reservations.
 
Andy said:
I remembered today that Bob Courtney had issues with nutritional intake and that he was actually sectioned.

And Naomi's writing about how care and compassion should be a given echo Bob's writing from 6 years ago.

You can find him posting about his experience here, https://www.s4me.info/threads/bob.1068/page-2#post-41205

ETA: Removed quotes from a members-only thread.
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Thanks for sharing that, Andy. It was both moving and distressing to go back and re-read Bob’s harrowing account of what he endured, in his typically humble, generous and articulate way. What a shining example he was, not just to our community but to humanity. [Edit: And what a tragic loss.] That such a kind, rational and eloquent person was treated with such contempt and cruelty by those entrusted with his care speaks volumes about the magnitude of prejudice we face – as do the words of Maeve, Sarah, Sean, and Naomi that have been shared in this thread.

Thinking about the experiences of Maeve, Bob and Naomi reminded me of an infamous quote. In the book “Psychological Disorders in General Medical Settings”, SW wrote:

“The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible’”​

NB The above quote has often be used out of context, omitting the fact that SW was quoting someone else. There is a full discussion about the quote with more context here: https://www.s4me.info/threads/contr...mon-wessely-a-thirty-year-retrospective.1710/

In the context of this thread, it is notable that SW was quoting a gastroenterologist. Bob was sectioned, badly mistreated in hospital and took his own life. Maeve was sent away “with as little ceremony as possible” and starved to death.
 
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Robert 1973 said:
Thanks for sharing that, Andy. It was both moving and distressing to go back and re-read Bob’s harrowing account of what he endured, in his typically humble, generous and articulate way. What a shining example he was, not just to our community but to humanity. [Edit: And what a tragic loss.] That such a kind, rational and eloquent person was treated with such contempt and cruelty by those entrusted with his care speaks volumes about the magnitude of prejudice we face – as do the words of Maeve, Sarah, Sean, and Naomi that have been shared in this thread.

Thinking about the experiences of Maeve, Bob and Naomi reminded me of an infamous quote. In the book “Psychological Disorders in General Medical Settings”, SW wrote:

“The description given by a leading gastroenterologist at the Mayo Clinic remains accurate: ‘The average doctor will see they are neurotic, and he will often be disgusted with them. Often he sends them away with as little ceremony as possible’”​

NB The above quote has often be used out of context, omitting the fact that SW was quoting someone else. There is a full discussion about the quote with more context here: https://www.s4me.info/threads/contr...mon-wessely-a-thirty-year-retrospective.1710/

In the context of this thread, it is notable that SW was quoting a gastroenterologist. Bob was sectioned, badly mistreated in hospital and took his own life. Maeve was sent away “with as little ceremony as possible” and starved to death.
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I don’t know what Bob’s wishes were, but I know advocates are citing others stories similar to Maeve. Did Bob want his story to be shared?
 
Because it’s often “young women” it doesn’t seem unreasonable that they’re suspected of an eating disorder, but Bob’s experience, as a man over 50, really underlines how badly pwME are treated despite your sex or age. However I wouldn’t share it - nor should anybody- unless anyone knows that’s what he would have wanted. .
 
MrMagoo said:
Because it’s often “young women” it doesn’t seem unreasonable that they’re suspected of an eating disorder
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That's what happened to me. In my case, the psychiatrists I was referred to were really helpful; they worked out very quickly that I didn't have the characteristics of someone with an eating disorder, just as any other specialist could spot the absence of patterns they see every day. The problem was my GP, who kept re-referring me because his knowledge of eating disorders was about on par with the Daily Express.

I wasn't nearly as vulnerable as Maeve and others, though. I could eat enough to survive, just not enough to maintain normal body weight.
 
MrMagoo said:
I don’t know what Bob’s wishes were, but I know advocates are citing others stories similar to Maeve. Did Bob want his story to be shared?
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Robert 1973 said:
I don’t know. @Tom Kindlon @IanMcPhee @Simon M @Adrian or @Woolie may be able to answer.
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In the members’ thread, Bob says that he would like a journalist to tell his story:
https://www.s4me.info/threads/bob.1068/page-4#post-42829

Graham (who was a good friend of Bob’s) was also clear that Bob wanted his experience to be used: https://www.s4me.info/threads/bob.1068/page-8#post-175872

In that thread, Graham refers to the inquest (which had not then happened). Does anyone have any information on the outcome of the inquest?
 
Sbag said:
An interesting article from PULSE (a GP publication )

“Behind the headlines: A case study in how the press can blame a blameless GP”

Pulse examines the media coverage of the inquest of a woman with ME as headlines abound blaming her GP. Maya Dhillon looks at the case and questions why these dangerous headlines are being used

https://www.pulsetoday.co.uk/analys...dy-in-how-the-press-can-blame-a-blameless-gp/
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The article is so serious and heartbreaking.
Yet in spite of this, this John Glasspool chap, still finds it in himself to provide a flippant comment:
'What about the people with “total allergy syndrome”. similar?'

Seriously. What is wrong with these people?

... and he's not afraid to go on public record with this lack of empathy ... and lack of knowledge!

It's this kind of callousness that I find the most dispiriting.
 
Lidia Thompson said:
Yet in spite of this, this John Glasspool chap, still finds it in himself to provide a flippant comment:
'What about the people with “total allergy syndrome”. similar?'

Seriously. What is wrong with these people?
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That brief comment is ambiguous. It could be read as raising the issue that people with total allergy syndrome have similar difficulties with medical care. I don't think we have any way of knowing what the writer meant.
 
Robert 1973 said:
In the members’ thread, Bob says that he would like a journalist to tell his story:
https://www.s4me.info/threads/bob.1068/page-4#post-42829

Graham (who was a good friend of Bob’s) was also clear that Bob wanted his experience to be used: https://www.s4me.info/threads/bob.1068/page-8#post-175872

In that thread, Graham refers to the inquest (which had not then happened). Does anyone have any information on the outcome of the inquest?
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Perhaps @dave30th @Naomi10 could add his experiences to any pieces they write?
 
Kitty said:
That's what happened to me. In my case, the psychiatrists I was referred to were really helpful; they worked out very quickly that I didn't have the characteristics of someone with an eating disorder, just as any other specialist could spot the absence of patterns they see every day. The problem was my GP, who kept re-referring me because his knowledge of eating disorders was about on par with the Daily Express.

I wasn't nearly as vulnerable as Maeve and others, though. I could eat enough to survive, just not enough to maintain normal body weight.
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You’re very kind, I call it “Daily Mail Headline based-knowledge”
 
Times online (1.15pm today, Will Humphries, southwest correspondent) has an article on Maeve introduced on the front page in the form of a letter written by Whitney Dafoe to the coroner describing his experience living with TPN and a J tube which he has done for nearly 10 years.

‘I lived, Maeve died’: ME patient who got help writes to coroner"


"A patient with severe myalgic encephalomyelitis (ME) has told a coroner that the death of a young woman could have been avoided if she received the same tube feeding which has kept him alive for the past decade.


Whitney Dafoe, a 41-year-old American who suffers from the debilitating disease also known as chronic fatigue syndrome (CFS), has written a letter to Deborah Archer, the assistant coroner for South Devon, describing the death of Maeve Boothby O’Neill as a travesty.


Archer has been holding an inquest into the death of Boothby O’Neill, who died aged 27 in October 2021 after suffering with severe ME which left her bedridden and starving because she was too exhausted to eat.

Archer, who will deliver her verdict and findings on Friday, was told by NHS consultants that they could not attempt total parenteral nutrition (TPN), a type of tube feeding which bypasses the gastrointestinal tract and places nutritional fluids into a vein, because they couldn’t feed Boothby O’Neill while she was lying flat. Nor could they create “the required sterile conditions” in her bed, they said, because she couldn’t bear to be washed for periods of time.


In a letter to the court, Dafoe said that Boothby O’Neill’s death could have been avoided had she undergone the procedure. He said: “If I was treated the way Maeve was treated, I would be dead just like Maeve.



“Luckily, I had doctors who viewed ME/CFS as the serious physiological disease that it is, and understood that the risk of needing to take antibiotics occasionally or add a few extra steps to my daily routine was better than the certainty of death from starvation, dehydration or malnutrition, which is what killed Maeve.

“Maeve just needed a way to get nutrition into her body. I got TPN and lived. Maeve was denied TPN and died.”




The article goes on to say that
"Dr Ovishek Roy, a consultant gastroenterologist at the Royal Devon and Exeter Hospital, where Boothby O’Neill was admitted three times before her death, told the inquest that “without the required sterile conditions, TPN would be fatal” because it could quickly lead to a deadly infection entering the bloodstream and heart.

He also told the coroner that because Boothby O’Neill’s gut was working “you will do harm by not using it because the muscle of the gut will waste if you stop using it”.



The inquest has heard that Boothby O’Neill was faced with several doctors who did not accept that ME was a medical condition and nurses that were “far out of their comfort zone”.


Dafoe told the coroner it was “a travesty that Maeve did not receive nutrition like I received” and explained how for 18 months he was kept alive by TPN through a peripherally inserted central catheter (PICC) line, a long thin tube inserted into one of the larger veins near your heart.

“I never got sepsis, but I did get a few infections,” he said. “They were treated with antibiotics and I got over the infections in a matter of days and was fine. The PICC line was installed at home, and when it needed changing, it was changed at home as well.”

Sarah Boothby, her (Maeve's)
mother and main carer, had repeatedly pushed for artificial feeding at an earlier stage in her deterioration but was thwarted when doctors said they were “content” with her nutritional intake.

By her third admission in June 2021, doctors finally agreed to try a nasogastric feeding tube, placed through the nose down into the stomach, but her condition had deteriorated so badly it did not work. By this time Boothby O’Neill was bedbound and so hypersensitive to stimulation that she needed to be in a dark and quiet room where visitors could only whisper.


There are then links to two other articles firstly on ME, and then on Maeve. being unable to tolerate a hug.
 
The first comment on the article accuses the Times .......

"The Times is running a deplorable campaign of misinformation about so-called ME/CFS. There is no evidence this "disease" has any physiological or biological origin. Deeply troubled individuals latch on to this mythical diagnosis and your relentless campaign to have it taken seriously will only encourage more people to frame their mental health issues with this invented narrative. Just because one of your staff members has had a terrible tragedy in his life does not mean you have the right to mislead and gaslight thousands of other people."
The above has 4 likes.
Mythical diagnosis?? The naysayers have not gone away.

edit: response t above comment. "
"Chronic fatigue certainly does exist, commonly following viral infections, and I - a retired hospital doctor- suffer from long Covid fatigue myself.

I am not a “deeply troubled individual”, and neither are the majority of the thousands of other normal patients with this group of conditions.

Just because we have not yet elucidated the causative pathway, it does not mean we can pretend the disease does not exist. Nobody knew the cause of TB until the tubercle bacillus was isolated, but it killed literally millions through human history prior to that point.

I wonder what your medical qualifications are, and hope that you are not in a patient facing specialty." ( 5 likes)
 
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