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

Care for people with severe ME is “nonexistent,” says coroner in call to action | The BMJ
doi: https://doi.org/10.1136/bmj.q2202 (Published 08 October 2024)


“The inquest heard that provision of care for patients with severe ME such as that which Maeve suffered from was and is nonexistent and that being placed on a ward that did not have expertise in her condition made her admission to hospital very difficult for her to endure,” said Archer, assistant coroner for the county of Devon, Plymouth, and Torbay.

She added, “During the course of the evidence it became clear that there were no specialist hospitals or hospices, beds, wards or other healthcare provision in England for patients with severe myalgic encephalomyelitis (ME). This meant that the Royal Devon and Exeter Hospital had no commissioned service to treat Maeve and patients like her.”

It also became clear, Archer said, that “there was no current available funding for the research and development of treatment and further learning for understanding the causes of ME” and “extremely limited training for doctors on ME/CFS and how to treat it—especially in relation to severe ME.”

In addition, the 2021 NICE guidance on ME did not provide “any detailed guidance at all on how severe ME should be managed at home or in the community and in particular whether or not there is any necessary adaptation needed to the 2017 guidance on nutrition support for adults: oral nutrition support, enteral tube feeding and parenteral nutrition.”
Click to expand...
 
Haveyoutriedyoga said:
Care for people with severe ME is “nonexistent,” says coroner in call to action | The BMJ
doi: https://doi.org/10.1136/bmj.q2202 (Published 08 October 2024)
Click to expand...
Reg 28 to NHS England .....

'Non-executive directors (NEDs) in the NHS are responsible for challenging the executive directors' strategy and decision-making.

They are also accountable for the trust's performance and the exercise of their powers, along with the executive directors. '


So, Simon and chair, Richard, Meddings of NEDs, what are you going to do about it?
 
Suffolkres said:
Reg 28 to NHS England .....

'Non-executive directors (NEDs) in the NHS are responsible for challenging the executive directors' strategy and decision-making.

They are also accountable for the trust's performance and the exercise of their powers, along with the executive directors. '


So, Simon and chair, Richard, Meddings of NEDs, what are you going to do about it?
Click to expand...
 
Really odd that the report does not at least include something, anything, about the fact that the updated guideline was explicitly rejected by the professional associations and the health care system subsequently refused to implement it. They can promise all they want about something to be delivered in some potential future, they had 3.5+ years and they failed to do anything at all.

You'd think this would be somewhat relevant. It's not excuse to say that the guideline isn't comprehensive about this particular situation, that's the exact same problem: a bunch of professional saboteurs weakened the guideline, then the weakened guideline was not even implemented in large part because it's actually factual for once, and they want the fantasy version that allows them to neglect people to death.

This isn't some incidental thing. It's central to it all. There were freaking public tantrums and everything. And it's as if it didn't even happen. This nightmare continues largely because most of the basic facts are systematically brushed off, even when they especially matter. It's maddening how it all operates like we're still in pre-modern times and basic facts are intensely controversial and political. This is the opposite of how professionals are supposed to behave.
 
JohnTheJack said:
I'm a firm believer in the cock-up theory, ie, cock-up rather than conspiracy.
Click to expand...
It’s not ‘cock-up’.

If this situation was accidental then at least some of the time like flipping a coin, things would go our way. Without people with ME having to literally kill themselves through fighting for better treatment or at least less mistreatment, and still getting nowhere fast.

Material interests of those already in power dictate the dominant ideology. Everyone is affected by the dominant ideology.

So though some people do actively conspire, it doesn’t need to be most people to involve themselves with that, just to support the establishment way over challenges to this.
 
Last edited:
Jonathan Edwards said:
It is interesting though that she repeats the implication given by the coroner that somehow the problem was not knowing how to treat ME/CFS. There seems to be an idea that 'ME' itself is a progressive fatal condition and that since we do not know how to treat it nobody knew how to keep Maeve alive. Which is of course not the case. The doctors knew how to keep Maeve alive.
Click to expand...
I agree that the doctors knew how to keep Maeve alive. What I don’t know is whether all the ME/CFS deaths have been preventable or not.

Emily Collingridge died in hospital. Mepedia says that the “inquest into her death recorded a narrative verdict, stating the cause of death as ‘respiratory arrest in an individual with clinically diagnosed ME due to the possible side effects of prescription drugs and aspiration of gastric contents.’” I don’t know all the details but it seemed as though her ME/CFS May have been progressive and I’m not clear whether her death was preventable or not.

I don’t know if there was an inquest into Kara Jane Spencer’s death. From memory, it appeared to be known that she was in danger of dying for some time before her death but I don’t know the cause or whether it was preventable.
 
JohnTheJack said:
The report has now been posted online.

https://www.judiciary.uk/prevention...by-oneill-prevention-of-future-deaths-report/

(HT: @Lucibee )
Click to expand...

Thanks John and Lucibee.

This version contains No 4, which was absent from Dave T's and other online versions:

"4 CIRCUMSTANCES OF THE DEATH

Maeve Boothby was 27 at the time of her death. She was diagnosed with ME at Frenchay hospital in 2011 and in 2019 it became so severe that she was bedbound for 21 hours per day.
Concerns about her rapid physical deterioration escalated and during 2021 she had three admissions to the RDE on 18th March , 19th May – 3rd June and finally on 25th June – 17th August. These admissions were unsuccessful in preventing Maeve from suffering from malnutrition which was a consequence of her ME for which there is no known cure. Maeve sadly died at home on 3rd October 2021."
 
Robert 1973 said:
What I don’t know is whether all the ME/CFS deaths have been preventable or not.
Click to expand...

As things stand we have no evidence of any case of ME/CFS being progressive in the sense of actually causing death directly or of a mechanism for that. I think it is much more likely that all the deaths are due to people getting weak because of poor nutrition with complications such as aspiration of gastric contents being common ways that can end.

If ME/CFS caused death directly through a metabolic or muscle weakness mechanism we would have had that well documented decades ago. It is not a rare illness and even if only one person in a hundred had a truly progressive form of that sort we would be seeing tens of deaths according to a pattern each year in the UK alone.

I worry when people talk about deaths being attributable to ME/CFS per se. I don't think we have evidence of it being a direct cause. I think it is easy to give the wrong impression about the illness. The coroner seems to have accepted that Maeve was likely to die of her ME/CFS anyway and I am not sure she understood what was really going on.
 
MEMarge said:
These admissions were unsuccessful in preventing Maeve from suffering from malnutrition which was a consequence of her ME
Click to expand...

Not really. It was a consequence of her difficulties in eating not being properly attended to. If someone dies of dehydration on an intensive care ward where they are recovering from meningitis we do not say that the dehydration was a result of the meningitis. It was a result of not giving adequate fluids.
 
Jonathan Edwards said:
As things stand we have no evidence of any case of ME/CFS being progressive in the sense of actually causing death directly or of a mechanism for that. I think it is much more likely that all the deaths are due to people getting weak because of poor nutrition with complications such as aspiration of gastric contents being common ways that can end.

If ME/CFS caused death directly through a metabolic or muscle weakness mechanism we would have had that well documented decades ago. It is not a rare illness and even if only one person in a hundred had a truly progressive form of that sort we would be seeing tens of deaths according to a pattern each year in the UK alone.

I worry when people talk about deaths being attributable to ME/CFS per se. I don't think we have evidence of it being a direct cause. I think it is easy to give the wrong impression about the illness. The coroner seems to have accepted that Maeve was likely to die of her ME/CFS anyway and I am not sure she understood what was really going on.
Click to expand...
Agree preventable.

But why are people getting poor nutrition if not nausea alone, then because of weakness of swallow or chew or stomach muscles?

Or weakness of ability to sit muscles preventing eating. So would that not be ME (or other illnesses undiagnosed) making muscles not function?
 
You must log in or register to reply here.
Back
Top Bottom