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

hibiscuswahine said:
They then get angry and then punitive. You would be surprised how draconian people can be!
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Not any more. They clearly hate and fear us, and are prepared to get us out of their clinics as fast as they can.
hibiscuswahine said:
I find the ever decreasing funding of Health by governments the biggest culprit in this drive to push out complex cases and not provide good explanations and medical (and where appropriate mental health) treatment.
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hibiscuswahine said:
I do wonder if this is from economic pressure from all the cutting of health budgets.
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This is exactly what is happening, and is why I often say that the BPS club could not have got away with what they have (and continue to do so) without sustained high level support from the broader establishment (political, financial, media, administrative, etc).

It is a very disturbing and dangerous confluence of certain illegitimate self-interests, and is destroying health systems and human lives the world over.

It is why so many BPS papers have the alleged high cost of 'functional' disorders in the first sentence of the abstract. They know what they are doing, and who they have to appeal to in order to keep the grift up. There is never a lack of those willing to prostitute their skills and professional status, and crush the lives of others, to gain power, glory, and income.

It is also why reform of this problem is taking so long and there is so much ruthless resistance to it. Nobody in power comes out of this looking good.
 
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hibiscuswahine said:
I was very impressed by the Good Morning Interview, thanks for putting it on YouTube Adam pwme

So it seems now the RDUH is now the place to call for help with very severe ME in the UK?
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Sarah seemed very strategic in the interview - I thought it was impressive. She came across as anything but "some type of mad mother", looking for a better future for us all, even while knowing that was deliberately denied to her precious daughter.

And engaging RD&E / RDUH who screwed this up so badly, and essentially forcing them into a corner to adopt the role of Centre of Excellence and reference site for the whole NHS is pretty smart.

It's a bit like the famous story of Tom Watson at IBM —

“Recently, I was asked if I was going to fire an employee who made a mistake that cost the company $600,000. No, I replied, I just spent $600,000 training him.”
 
Sean said:
Not any more. They clearly hate and fear us, and are prepared to get us out of their clinics as fast as they can.


This is exactly what is happening, and is why I often say that the BPS club could not have got away with what they have (and continue to do so) without sustained high level support from the broader establishment (political, financial, media, administrative, etc).

It is a very disturbing and dangerous confluence of certain illegitimate self-interests, and is destroying health systems and human lives the world over.

It is why so many BPS papers have the alleged high cost of 'functional' disorders in the first sentence of the abstract. They know what they are doing, and who they have to appeal to in order to keep the grift up. There is never a lack of those willing to prostitute their skills and professional status, and crush the lives of others, to gain power, glory, and income.

It is also why reform of this problem is taking so long and there is so much ruthless resistance to it. Nobody in power comes out of this looking good.
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I very much agree that it is more about the grift claiming 'cheap at any cost' with conflated and dodgy made-up figures behind said business cases. That also happen to have made up extrapolations that are not appropriate that try and put the blame at the door of the very people who couldn't possibly have got less care ie 'used' less resources.

These papers found eg 2 individuals that they had to make up a pretend pathway they 'might' (not on their nelly) have got as a supposed shopping list to make their pretend cases. Instead of focusing on the actual most frequent and what they actually did cost - because they couldn't sell any 'solution' for those people that benefitted them. I'm shocked at noone seeing through this cherry-picking, it's so obvious that all these papers and funders must really be wanting these to also be trojan horse papers.

NOW that is different to the 'in the name ofs' offering dangerous and useless things making a fortune of it. ANd somehow managing to benefit from the very useless of these things meaning the problem 'grows' instead of shrinking (because they make people worse) by twisting it as if what that indicates is people and those in charge need more of what they are flogging.

SO people need to be careful of saying that these BPS people aren't costing the country a fortune. I keep saying we need to try and add up what they are altogether managing to get out of their various kingdoms and the cost of the various add-on jobs etc. Which is completely separate to what we cost to the actual health service, or would cost for having basic care when it might be useful instead.
 
MrMagoo said:
Really good piece on GMB, started just before 7.20am for ten minutes if anyone wants to watch on catch up.

An interesting aside, Sarah Boothby said as a child Maeve was sent to a paediatrician monthly for two years but discharged herself twice, as the session was an hour of “being kind-of lectured about her single-parent background” the number of times I”ve been told this is the reason for my ME! and also that she needed to lower her sights as she was educationally high-achieving.
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What kinda nonsense is it to blame a child for her family circumstances and consider that appropriate as 'medical care' from a paediatrician? It's so bizarre that I cannot comprehend. Sarah mentioned that they used to laugh about it which is tough. However, I suspect there is a much darker take that stopped or held them back from complaining as they perhaps feared consequences such as social services involvement and allegations of FII is they complained. Hence this appalling behaviour carries on I assume, even now.
 
Trial By Error: A Deeper Dive into the Inquest’s “Findings and Conclusions”

"In fact, the testimony revealed a complete lack of understanding of ME among almost all the health care providers, whether based at the hospital or in the community. This lack of understanding appeared to lead to some questionable medical decisions in the last months of Maeve’s life, even as she begged to be fed. Many of the details have been recounted in widespread coverage by The Times, The Guardian, The Telegraph and other news organizations. It isn’t surprising that patients and carers who have followed the case closely felt dismayed, distressed and confused by Archer’s decision not to hold anyone (or any actions or inactions) accountable."

https://virology.ws/2024/08/15/tria...e-into-the-inquests-findings-and-conclusions/
 
Joan Crawford said:
What kinda nonsense is it to blame a child for her family circumstances and consider that appropriate as 'medical care' from a paediatrician? It's so bizarre that I cannot comprehend. Sarah mentioned that they used to laugh about it which is tough. However, I suspect there is a much darker take that stopped or held them back from complaining as they perhaps feared consequences such as social services involvement and allegations of FII is they complained. Hence this appalling behaviour carries on I assume, even now.
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My appointment and subsequent letter from Prof PD White gives extensive background on my family structure and childhood, about a third of the document.
When discussing something else, and my ME was mentioned, a GP asked me if my parents were divorced? I said yes and he asked how long? I said since I was very young. He said “ah of course, so that’s the childhood trauma hence the ME”
I was very much an adult, however these were both a in similar time that Maeve and Sarah would have had this experience, so my bet is that there was some “they get ME from a difficult childhood such as their parents getting divorced” going around at the time. It was always getting brought up for me.
Also I’m of a generation where everybody’s parents got divorced. I can say it was a 60/40 spilt between my childhood friends in favour of divorced! Yet bizarrely, they didn’t catch ME from their divorce trauma.
 
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MrMagoo said:
I’m of a generation where everybody’s parents got divorced. I can say it was a 60/40 spilt between my childhood friends in favour of divorced!
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Funny, isn't it, that I'm of a generation where divorce among parents was quite unusual, yet people my age still have ME. It was even less common in my grandparents' generation (people born in the last two decades of the 1800s or the first of the 1900s), yet....there they are.

It's almost as if someone's completely made it up.
 
Kitty said:
Funny, isn't it, that I'm of a generation where divorce among parents was quite unusual, yet people my age still have ME. It was even less common in my grandparents' generation (people born in the last two decades of the 1800s or the first of the 1900s), yet....there they are.

It's almost as if someone's completely made it up.
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But the riposte will be that people stayed together in toxic relationships which also affected children negatively.... cake and eat it...
 
DigitalDrifter said:
What were you taught about ME and Fibromyalgia?
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No, not specifically, we were taught that some people developed post infection fatigue syndromes (ME) but little was known about why they occurred other than it was some sort of immune response. The year I went to med school, 1985, NZ had a mass outbreak of a post infectious syndrome in 1984. It was called Tapanui Flu. It was big news in NZ and we were very aware via the media that people had persistent and disabling symptoms. So there was a lot of enquiry/research going into it locally and people were being diagnosed with ME. The medical profession took it very seriously.

But by the mid 90's, when I started psych training. The UK psych research (poor quality) showed a connection between stress at the time of infection and ME, that led on to the research into personality types that are vulnerable to stress. By then I had developed ME in the in 1996. It was seen as an illness of high achievers, The whole attitude of medicine and psychiatry changed to it being a psychosomatic/stress induced illness and was called Yuppie Flu and that continued for many years (still does for some doctors), as psych research dominated the research space. Then the term CFS was thought up which further mischaracterised us. One of our GP's was at the Royal Free Hospital doing overseas training during the 1955 outbreak there and she became the leading expert in NZ trying to counter the BPS and started ANZMES our national clinical advisory NGO with patients and other interested doctors/researchers.

There was no teaching on fibromyalgia, I only became aware of it as a diagnosis in the 90's. The Central Sensitisation Theory had not been thought up and only started to feature as a hypothesis in the literature I read in the 2000's.
 
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MrMagoo said:
My appointment and subsequent letter from Prof PD White gives extensive background on my family structure and childhood, about a third of the document.
When discussing something else, and my ME was mentioned, a GP asked me if my parents were divorced? I said yes and he asked how long? I said since I was very young. He said “ah of course, so that’s the childhood trauma hence the ME”
I was very much an adult, however these were both a in similar time that Maeve and Sarah would have had this experience, so my bet is that there was some “they get ME from a difficult childhood such as their parents getting divorced” going around at the time. It was always getting brought up for me.
Also I’m of a generation where everybody’s parents got divorced. I can say it was a 60/40 spilt between my childhood friends in favour of divorced! Yet bizarrely, they didn’t catch ME from their divorce trauma.
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:rofl:
 
MrMagoo said:
my bet is that there was some “they get ME from a difficult childhood such as their parents getting divorced” going around at the time.
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my bolding

lol its still 'going around'... there is no 'at the time' about it! I have been told such things consistently throughout my 23yrs of illness, including quite recently (approx 5yrs ago). They just look for some negative event in your childhood & pin it on that, as if all people with divorced parents, or who had a parent die, or who suffered abuse, get ME!
There is no one alive who didnt have an event that could be seen as negative, in their childhood.

Oh and the people who had loads of adverse events and still healthy? Oh well they are just super-strong admirable people, who didnt let it 'get to them' or, fought through it, or.... "stared down the barrel of the gun & disarmed it"
 
JemPD said:
my bolding

lol its still 'going around'... there is no 'at the time' about it! I have been told such things consistently throughout my 23yrs of illness, including quite recently (approx 5yrs ago). They just look for some negative event in your childhood & pin it on that, as if all people with divorced parents, or who had a parent die, or who suffered abuse, get ME!
There is no one alive who didnt have an event that could be seen as negative, in their childhood.

Oh and the people who had loads of adverse events and still healthy? Oh well they are just super-strong admirable people, who didnt let it 'get to them' or, fought through it, or.... "stared down the barrel of the gun & disarmed it"
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Oh it still does, but I was hearing it when Maeve was.
There was also some issues as just before I got ill, I was in a car accident which is a known cause of Fibromyalgia.
Divorced parents plus recent car crash, oh no! Is it CFS or FMS!?!? It can’t be both, as I’m sure you all know that it is impossible to have both conditions. I was reminded of this only 5 years ago by an occupational health Dr who is also a GP.
 
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