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

Andy said:
That all articles, at least that I read, reported on the inquest without giving a voice to the BPSers or otherwise psychologising patients represents significant progress.
Click to expand...

I thought this was pretty interesting to see while I was there. I might even have mentioned it in a post or tweet? I can't remember. But there was no reflexive quoting of "the other side" here. Maeve's condition was taken seriously and those who doubted that (ie consultants, etc) were portrayed in a negative lights. Definitely seemed like a difference. Likely due in some part (but not all) to both direct and indirect impact of Sean's position--direct because that's how his colleagues at The Times would cover it, and indirect because of his general credentialed status and, related to that, his perceived credibility.
 
dave30th said:
Likely due in some part (but not all) to both direct and indirect impact of Sean's position--direct because that's how his colleagues at The Times would cover it, and indirect because of his general credentialed status and, related to that, his perceived credibility.
Click to expand...

I worry that it's partly due to the BPS lobby understanding that severe/very severe ME/CFS isn't their territory. That they might think it can be hatched off as a different condition, and argue that all the crap is still fine for people with milder illness.

But it might just have been that they knew it would look obscene in the circumstances.
 
I am not arguing about the contribution of the importance of Sean’s professional good standing and influence as a journalist, but for me the star witness in these proceedings is M herself. She clearly showed she was a fully competent person who understood her predicament and demonstrated that she was ill not through her own choice but because of biological processes over which she had no control. She repeatedly asked/pleaded for medical help to keep her alive and found that no effective medical help was made available or forthcoming and she consequently died.

This is the factual story presented at the Inquest and which the Press were bound to report. No BPS alternative story line was presented to the Inquest, for the simple reason that they could not present any evidence to support the BPS alternative psychological story line on ME/CFS. They could not show that M was an unreliable witness with regard to how her illness affected her or show that she did not/would not eat through her own choice. They could not assert a different storyline to the Press outside the Inquest without highlighting the fact that they were not/could not present their different storyline as evidence to the coroner at the Inquest.

It is my experience having gone to law against the BPS psychological view of ME/CFS that as soon as the argument between biology and psychology over ME/CFS is taken to law for adjudication in individual cases outside the claustrophobic confines of the Medical Profession, that the only “Expert Medical Opinion’ left standing with any credibility is the one that diagnoses ME/CFS as being an organic biological illness of unknown causation with no universal successful treatments being known. That diagnosis is the one accepted at UK independent legal adjudication and matches the obvious credibility of all the different ME/CFS patients it has been my privilege to meet as an advocate and carer.

It is the BPS Psychological description and treatment of ME/CFS that is without credibility at law (or in science) not the patients' credibility and that is why the Coroner found as fact, ME/CFS is a biological illness and led to M’s death.

The silence from the BPS in these circumstances speaks volumes about their own recognition of lack of credibility in their position regarding ME/CFS.
 
Kitty said:
But it might just have been that they knew it would look obscene in the circumstances.
Click to expand...
This is my bet, & I hope Maeve's family, and the wider community are bracing for it all to get used once an 'appropriate' amount of time has seen to have passsed. For example:

"We must stop preventing patients from accessing the evidence based therapies that we know help some, and we must ensure early intervention is paramount, in order to avoid such tragedies as the case of poor Maeve Boothby O'Neill, who was ill served by private doctors with the dualistic approach to medicine which leads to either theraputic nihilism or dangerous experimentation with drugs that may do harm. Functional symptoms are real, can be severe, and can be treated. The NICE guideline for chronic fatigue is hindering progress and preventing patients getting the treatment they need".
 
JemPD said:
This is my bet, & I hope Maeve's family, and the wider community are bracing for it all to get used once an 'appropriate' amount of time has seen to have passsed. For example:

"We must stop preventing patients from accessing the evidence based therapies that we know help some, and we must ensure early intervention is paramount, in order to avoid such tragedies as the case of poor Maeve Boothby O'Neill, who was ill served by private doctors with the dualistic approach to medicine which leads to either theraputic nihilism or dangerous experimentation with drugs that may do harm. Functional symptoms are real, can be severe, and can be treated. The NICE guideline for chronic fatigue is hindering progress and preventing patients getting the treatment they need".
Click to expand...
Oh yeah.
 
Kitty said:
But it might just have been that they knew it would look obscene in the circumstances.
Click to expand...

tuppence said:
The silence from the BPS in these circumstances speaks volumes about their own recognition of lack of credibility in their position regarding ME/CFS.
Click to expand...

Sadly there was one outlier, in the offensively inappropriate Observer/Guardian article by Alastair Miller, written about by David Tuller
Article l Thread
 
Trish said:
Sadly there was one outlier, in the offensively inappropriate Observer/Guardian article by Alastair Miller, written about by David Tuller
Article l Thread
Click to expand...
Yes I was going to say, they dipped their toe in the water. Miller put on his best face, and implored people of opposing beliefs to work together against the common enemy - ME/CFS. What a lovely man. Did I say lovely man? I meant Trojan horse. Turn it away, it’s no gift.

I did see a Reddit debate about his article, some “normal health” person absolutely could not understand what was inflammatory or offensive about his article. He really did a number with it, at surface level it reads well.
 
As I say, it doesn’t seem similar (on the surface) to Maeve’s story.
And on the surface Maeve’s story is about lack of ME services and knowledge, and that she couldn’t eat, hospital “couldn’t” help so she died.

Its really not coming across to the average person reading the press or seeing the news that the endless dancing and flirting with BSP “could it be mental?” And “she can swallow when she wants to” and “actually it’s her manipulating her mother, not the mother being Munchausen By Proxy” and the reason there’s no services is because Psychiatry jettisoned them with their BSP nonsense. As I said, we can see all of this. I don’t think average people do.
 
Mirza case is quite similar to Maeve in that she developed intolerance to eating and drinking and died as a result. The hospital made her worse (psychiatric treatment, no medical feeding support) and she was sectioned under the false assumption that her mother was making her worse due to false illness beliefs by the NHS psychosomatic ideology.

The Wikipedia page links to a New Scientist article which confirms the dehydration caused the kidney failure. Why would ME/CFS cause kidney failure per se? So, this is another ME/CFS death directly caused by NHS psychosomatic/functional disorder ideology.

In July 2003 Mirza was forceably removed from her home and sectioned for two weeks by her doctors, who had come to believe her condition was psychosomatic, an action which her mother and sister said severely worsened her condition. Her mother and sister stated that Mirza's physical symptoms were treated as a mental condition rather than a physical illness, and her caregiver mother was accused of 'enabling' her.[2][3]

Death
For two years following her sectioning, Mirza's health deteriorated. By September 2005 she took a significant turn for the worse, developing intolerance to most of the food she consumed, ear infection and severe pain, and was only able to consume a small amount of water. Mirza died on 25 November 2005. Initial autopsy results were inconclusive for her cause of death, but a second autopsy and the results of an inquest released on 13 June 2006 determined the cause of death to be "acute anueric kidney failure due to dehydration caused by CFS".[1] Though initially reported by New Scientist as the first death worldwide ascribed to CFS, the magazine later acknowledged that other deaths had been directly attributed to CFS in the United Statesand Australia.[1] Fatalities have been attributed to CFS or ME since at least 1956.[4]
Click to expand...

https://en.wikipedia.org/wiki/Sophia_Mirza
 
MrMagoo said:
he reason there’s no services is because Psychiatry jettisoned them with their BSP nonsense. As I said, we can see all of this. I don’t think average people do.
Click to expand...

I don't think that is actually what happened. I think the medical people were very happy to palm patients off on psychiatrists. The services were never there any way. The BPS (rather than BSP) people made their careers out of selling their wares but only because the physicians wanted to offload - as they still are, judging by the BSG documents.
 
Lou B Lou said:
Sophia Mirza's Brighton GP instigated the sectioning. The GP went from psychiatrist to psychiatrist until she found one willing to section Sophia. The first 2 psychiatrists said No (to their credit), as far as I remember. The GP also tried to persuade the psychiatrist to section Sophia's mother and carer Criona. The psychiatrist said No.


All the documents relating to the sectioning of Sophia, medical records, letters between GP and psychiatrist, social services correspondence, Sophia's mother's complaint to the GMC, etc are all online on the site 'Sophia and ME'

The documents are on the right.

Sophia and M.E.
http://www.sophiaandme.org.uk/


.
Click to expand...

This sectioning is so similar to Bob.

He was terrified of it happening again.
 
Sid said:
The Wikipedia page links to a New Scientist article which confirms the dehydration caused the kidney failure. Why would ME/CFS cause kidney failure per se? So, this is another ME/CFS death directly caused by NHS psychosomatic/functional disorder ideology.
Click to expand...

Thanks for the link. So, yes, the two cases seem very similar. Death was in essence due to neglect in the sense that feeding support should have been provided and was not. This would have been justified on the basis of a functional disoder ideology that says that people with ME/CFS have neither intestinal failure nor a bona fide psychiatric reason for not eating so should be treated with (non-existent) psychotherapy rather than food and water.

I think it is unfortunate that these deaths are being used as examples of 'deaths due to CFS (or ME)'. The deaths are due to failure of care. Suggesting that they are due to ME/CFS justifies the idea that there is no point in giving care because the person will die of 'the disease' anyway. Whitney Dafoe proves that they don't.
 
Jonathan Edwards said:
Suggesting that they are due to ME/CFS justifies the idea that there is no point in giving care because the person will die of 'the disease' anyway.
Click to expand...
But surely that doesn't happen in other diseases. No matter how likely someone is to die soon, they should stlll be provided with nutrition and hydration if they want it. I think of my friend with motor neurone disease who died a few years ago. The local arrangement for people with MND was for them to be given hospice care when they could no longer be cared for at home. She had a PEG fitted only a few weeks before she died, she wasn't left to starve.
 
In addition to Sofia, Merryn Crofts more recently also died in similar circumstances. Again, I'm surprised no one has mentioned her in all the recent coverage as her story was covered internationally 6 years ago.

eta:
A mum has told of her ‘torture’ at watching her beautiful daughter waste away as she battled a disease some people refuse to believe exists.
Merryn Crofts died on May 23 last year, 10 days after her 21st birthday.
She weighed less than six stone and had spent the last three years of her life totally bed-bound, in almost unimaginable pain.

Merryn had severe myalgic encephalomyelitis - or ME - a neurological illness which affects up to 17 million people worldwide, according to some estimates.
But many think the condition is not real, even within the medical profession.

Now, Merryn’s family have taken the brave decision to speak about her life and death in a bid to raise awareness of the crippling disease.
Click to expand...
Manchester Evening News: Bedbound and in unimaginable pain, watching my daughter waste away and die from ME was torture | Science for ME (s4me.info)
 
Trish said:
But surely that doesn't happen in other diseases.
Click to expand...

It happens all the time. I well remember a patient of mine with a spinal lymphoma who had just had surgery - aged about our age - who the nurses put on to 'TLC', which included not giving drinks or keeping her mouth clean such that on my ward round she was severely dehydrate. I said to the sister I had not recommended this and she answered that since the patient had cancer that was their policy. I pointed out that the cancer was entirely curable, at which point sister went quiet.

Some days later the lady was sitting up in bed on Christmas Day and Father Christmas came around - a short tubby bearded man full of laughs. It was her husband giving out the presents. I continued to look after her and her arthritis for another ten years or so.

In Holland it is routine for older patients they tell me. Clearly it caries but Some of the comments at the recent inquest suggest that it was thought to be OK to let Maeve die because her ME/CFS was so bad that she did not have long to live anyway. That should never have been expressed.
 
You must log in or register to reply here.
Back
Top Bottom