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

tuppence said:
ME is a very complex serious illness with no easy answers.
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It is, but we have to remember that the hospital wasn't treating ME. It was—or should have been—treating malnutrition.

The fact that it's malnutrition in the context of severe ME does complicate things, of course. But I'm left with the overriding feeling that if the doctors had been clearer about what they were treating, and what their treatment objectives were, Maeve's care would have been better.

Doctors have to treat insufficient nutrition in all kinds of contexts, some of them quite difficult. But they don't seem to lose sight of their objective as they did here.
 
Nightsong said:
In yesterday's Guardian there was a double-page feature:
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That's fantastic to see they have given so much space in the print edition.

These are the 3 online articles we've seen this week, which may be the same articles with different headlines.

The Guardian Devon woman died from malnutrition due to severe ME, coroner concludes
The Guardian What is ME and why is the NHS being criticised
The Guardian ‘I’ve been tired since I was 13’: ME patients hope harrowing inquest will change perceptions
(from this week's News in Brief)
 
Ash said:
Thank you for going through the information for us all.

I don’t think that her conclusion of natural progression of the illness necessarily points to the nature of the illness physical or otherwise though.
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See post below:


The Coroner specifically said that ME was physical not psychological which will be recorded in evidence I believe.

MrMagoo said:
Coroner hinted there will be more for the Hospital Trust in September.

I think she’s going to be concerned with systemic failings, lack of protocols and beds.

View attachment 22749
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Ash said:
Oh good. Thanks!


I don’t know where that leaves us exactly. I guess it depends how she backs up that. Is it medical references?
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I think it more likely that the medical and science evidence/opinion given at the Inquest, clearly shows that there was and is no medical explanation or any medical/science evidence to support a psychological attribution to ME. Clearly the medical evidence presented shows the patient is undergoing a degenerative disease process, which the psychological view is unable to describe or ameliorate let alone cure.
 
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tuppence said:
I think it more likely that the medical and science evidence/opinion given at the Inquest, clearly shows that their was and is no medical explanation or any medical/science evidence to support a psychological attribution to ME. Clearly the medical evidence presented shows the patient is undergoing a degenerative disease process, which the psychological view is unable to describe or ameliorate let alone cure.
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Oh good. Even better.
 
https://twitter.com/user/status/1822350869171781953


Todd Davenport, "I’d say If you need to put into a guideline that medical teams should do the bare minimum to keep people alive, and without the guideline then providing basic supportive care is somehow debatable, then you’ve got much bigger problems with your humanity that a guideline won’t fix."
 
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@swastrosarah
Alice Barrett would have died an identical death under his care had we - the patient carer community - not used an open inquest to persuade BBC to shame RDUH into action."

@swastrosarah
#pwME If you or your #Close2ME have the capacity to sue for medical negligence of #ME, contact Tim Annett at Irwin Mitchell in Shefffield. No win no fee. Tim.Annett@irwinmitchell.com. Please share far and wide.


https://twitter.com/user/status/1822885389301854293


https://twitter.com/user/status/1822912272903061861
 
Amw66 said:
https://twitter.com/user/status/1822350869171781953


Todd Davenport, "I’d say If you need to put into a guideline that medical teams should do the bare minimum to keep people alive, and without the guideline then providing basic supportive care is somehow debatable, then you’ve got much bigger problems with your humanity that a guideline won’t fix."
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Yes. We do.
 
Sid said:
@swastrosarah
Alice Barrett would have died an identical death under his care had we - the patient carer community - not used an open inquest to persuade BBC to shame RDUH into action."

@swastrosarah
#pwME If you or your #Close2ME have the capacity to sue for medical negligence of #ME, contact Tim Annett at Irwin Mitchell in Shefffield. No win no fee. Tim.Annett@irwinmitchell.com. Please share far and wide.


https://twitter.com/user/status/1822885389301854293


https://twitter.com/user/status/1822912272903061861
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What does Sarah say in the quote of her posted by someone else that she then replied to?

Can’t see the end of it.
 
Ash said:
What does Sarah say in the quote of her posted by someone else that she then replied to?

Can’t see the end of it.
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She says the following:

@swastrosarah
1/2 In court, Strin said there is no treatment for OI. In a risk management meeting with social services he said, "there have been 18 deaths due to a form of serious CFS in the last 6 years and Sarah is convinced Maeve will be the 19th person; however 16 of the deaths were due to

@swastrosarah
2/2 malnutrition associated with CFS and he did not think this related to Maeve. […] (Sarah) sees malnutrition in the ward and thinks the same will happen with Maeve." [heard at inquest]

https://twitter.com/user/status/1822881098923196676


https://twitter.com/user/status/1822881286697984248
 
It appears that Strain alleges that death from malnutrition in ME/CFS is much more common than we thought. Unfortunately, he's right about there being no evidence-based treatment for OI in ME/CFS. The information contained in Weir's letters would have been dismissed as quackery by the NHS consultants since it's based on anecdotal evidence.
 
Sid said:
It appears that Strain alleges that death from malnutrition in ME/CFS is much more common than we thought. Unfortunately, he's right about there being no evidence-based treatment for OI in ME/CFS. The information contained in Weir's letters would have been dismissed as quackery by the NHS consultants since it's based on anecdotal evidence.
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Thanks.
I can see why they wouldn’t weight Wier’s evidence on treatment highly. They can’t. It’s real shame though because his perspective on how people with ME diagnosis are treated in the NHS would probably also be taken less seriously due to his perspective on treatment, and the how people are treated is something he will base upon much firmer evidence.
 
Ash said:
Thanks.
I can see why they wouldn’t weight Wier’s evidence on treatment highly. They can’t. It’s real shame though because his perspective on how people with ME diagnosis are treated in the NHS would probably also be taken less seriously due to his perspective on treatment, and the how people are treated is something he will base upon much firmer evidence.
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Yes, exactly. It's a widespread problem in ME/CFS advocacy. Objective facts like patients being mistreated in hospitals or CBT/GET being ineffective are often paired with dubious claims about causation and treatment. We see this all the time from well-meaning doctors who advocate for us on social media, as well as patient orgs. Unfortunately, making baseless claims ends up discrediting everything you're saying, including the good bits.
 
Jonathan Edwards said:
Todd is right of course.

But it looks as if there is something more specific going on - that professional bodies are actively, if covertly, advising against supportive care. That should be fixable. If it isn't, the problem is even bigger than Todd is implying.
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Could you explain what you mean by the last sentence here @Jonathan Edwards?
 
I think he means that professional bodies advising against supportive care in the misguided but well intentioned view that this would be best for patients is fixable.

If these bodies can't accept that there's no evidence this helps patients, or if there is no intention to do what's best for patients, then it's a huge problem.
 
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