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

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Hoopoe said:
The right course of action is to admit that we need to develop the right way of managing these patients. In the meantime patients need legal protection against what is being done to them.
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By legal protection I mean approximately this: a prohibition to manage patients as if they only had a psychological or psychiatric problem when there is no good reason to think that is the case.

Specifically, not being able to find a disease through an objective test is not a good reason. Nor is the gut feeling of a doctor, or evidence from low quality clinical trials, or presence of comorbid psychiatric disorders or signs believed to be diagnostic of FND. A patient can be managed as if they had a psychological or psychiatric problem when there is really a good reason to think that is the only problem they have. And doctors making these decisions need to have the possibility of legal consequences in the back of their mind or they won't be careful enough.
 
hibiscuswahine said:
I find that hard to believe, if that is what he said. He is a gastroenterologist, he would have seen lots of patients over his career getting TPN. It is common on surgical wards when people eg. people's with Chrohn's Disease (and many other gastrointestinal diseases), who are unable to absorb nutrients in their GI tract go on TPN.

I think there may be some information missing and perhaps he thought the only way to get her to have nutrient support via TPN was to section her. Yes, a lot of nursing support would be required and would have taken away the last of her autonomy and be very traumatic.

No, I am just curious that they weren't asking the nursing staff about their attitudes towards ME. I know they said they had never nursed a ME patient but I wonder where Dr Strain's concerns in the letter to the Trust CEO, about all the staff who didn't believe ME was a medical problem but apparently this was not the doctors as they all testified they did.
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I think it was DrShelton’s letter, not Dr Strain
 
Robert 1973 said:
From memory, I tried to argue that we know it’s not psychological because we have all this evidence of physiological abnormalities. Now, I would emphasise how little we know about the pathology. I would use the NICE guideline, the re-analysis of PACE and other studies to show that CBT/GET don’t work and cause harm. And I would highlight the systemic injustices which have been caused by the adoption of the unscientific BPS model of ME/CFS.

I have written to and spoken to my new MP. She’s new to me because of constituency boundary changes but not a new MP. I asked her to join the new APPG, and to ask the Health Secretary to ring-fence appropriate funding for ME/CFS research. On the phone we also discussed the NICE gl, the inadequacy of services and the inquest, which she was aware of through the media.

She told me she would join the APPG and speak to Sajid Javid, who she knows well. She also suggested applying for another Westminster Hall or backbench business debate. She is now in opposition having previously been in government, which means she has more time and opportunity to get involved with this type of thing.

She said she would report back to me after speaking to Javid and AfME (who have secretarial duties for the APPG) to discuss what more she can do. I also want to ensure that she gets the arguments right if she submits any questions etc.

I was heartened by her apparent sympathy and enthusiasm to help. And I’m sure that the media coverage of the inquest has helped with that.
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Thank you.

We have been in conversation with our previous MP for 7 years and he new one for a good few months now as where we are is only ever a two horse race.


Robert 1973 said:
I asked her to join the new APPG, and to ask the Health Secretary to ring-fence appropriate funding for ME/CFS research. On the phone we also discussed the NICE gl, the inadequacy of services and the inquest,
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yes, we have been doing similar. Hopefully if enough of us are saying the same thing it will get through

Robert 1973 said:
how little we know about the pathology
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Interesting point. I shall see if we can do the same - i am currently writing a template email for all our local MP's. Very slowly!
 
Robert 1973 said:
I asked her to join the new APPG, and to ask the Health Secretary to ring-fence appropriate funding for ME/CFS research.
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Danger in going off topic here, but it occurs to me I used to know very well someone who is now in the HoL. Haven't had any contact since going to the Motor Show in 1986. Is the APPG a lot of work? Is it important? Does it actually achieve anything? I could think about contacting him to see if he'd be willing to join.
 
tuppence said:
This ‘Duty of Care’ requires that when explaining medical matters, they must give a full explanation of all the evidenced Medical views and treatment options together with information on all the risk’s associated with each treatment recommendation. Failure to do so is misleading and could be construed as an attempt to influence patient/public choice of medical view/treatment.
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This is probably where the whole "it's not medical, it's not quite psychiatric either, it's at the interface of the mind-body-spirit-brain-holy-ghost split" is critical. Let's be honest, there is no such thing as duty of care. Duties, by definition, cannot be shirked, they are mandatory. Rules only matter when they are enforced properly, and in the case of chronic illness there are clear orders to deny them. Worse, they spill over, as we saw here. A clear medical emergency was basically overruled by this obsession with "it could be fake and we're being taken for suckers" that seem to provide more motivation than any other factor.

The last sentence, "an attempt to influence patient/public choice of medical view/treatment", is basically what you find when you boil down the biopsychosocial "education as intervention" model to its natural "bunch of hot air" state. It explicitly tries to influence not just patient choice, but to distort its reporting, allowing it to be false, in fact preferring that it be false. It's even all written down plainly, it's the explicit goal. It's manipulative and exploitative. It's fundamentally unethical.

To allow psychosomatic medicine to gain this much influence, all the rules have to be suspended. You technically have the so-called duties of care and candor, and the whole thing makes a complete mockery of it. There is supposed to be informed consent, but basic information is routinely withheld precisely out of that obsession with patients 'medicalizing' their illness. Which can be a concern, but in its current form amounts to an industrial scale throwing babies out with the bathwater.

So the problem really is over standards. There are multiple standards. Sometimes they are high. Sometimes they are so low that "I saw it in a dream" is above-average. Mental health in general is treated to much lower standards than biomedical issues, if any. We are "the rest", where standards are in fact rejected, where explicitly manipulating subjective outcomes is actually necessary, whereas it's normally strictly forbidden.

And of course almost none of the mental health / biopsychosocial models of care meet minimal standards. Which obviously explains why they have such awful outcomes, about the worst RoI juice you could squeeze out of a rock. But we can't seem to get experts to care about that. Even though they care deeply about such things, as long as there is no exemption status.

It's the damn exemptions. The ones they can't admit publicly, because they know they are exemptions to standards, lack any reliable evidence whatsoever. It's a system of exceptions, not rules.
 
JohnTheJack said:
Danger in going off topic here, but it occurs to me I used to know very well someone who is now in the HoL. Haven't had any contact since going to the Motor Show in 1986. Is the APPG a lot of work? Is it important? Does it actually achieve anything? I could think about contacting him to see if he'd be willing to join.
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I’m not particularly knowledgeable but I think it’s one of those things where it’s a as much work as any member wants it to be. Carol Monaghan obviously put in a huge amount of work as chair but I think other MPs just turn up to the odd meeting and that’s about it.

I think it’s probably similar with APPGs themselves – what they do and achieve is very dependent on the motivation and capability of their members.

My feeling is that the more people who join the APPG the better – provided they don’t have views which are likely to be obstructive.
 
Hoopoe said:
By legal protection I mean approximately this: a prohibition to manage patients as if they only had a psychological or psychiatric problem when there is no good reason to think that is the case.

Specifically, not being able to find a disease through an objective test is not a good reason. Nor is the gut feeling of a doctor, or evidence from low quality clinical trials, or presence of comorbid psychiatric disorders or signs believed to be diagnostic of FND. A patient can be managed as if they had a psychological or psychi
atric problem when there is really a good reason to think that is the only problem they have. And doctors making these decisions need to have the possibility of legal consequences in the back of their mind or they won't be careful enough.
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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.
 
Re Roy's testimony & sectioning: it was the social worker from the previous day's testimony, I think, who conflated the two things originally. Also he wasn't just an average gastroenterologist - his subspecialty was nutrition and IF and he also stated that he had an interest in gut-brain disorders & in the latter context he mentioned working with neurodivergent people and patients with mental health needs. His was a tertiary nutrition & IF team. He wasn't her consultant; he stated that he stayed involved due to the complexity of the case. He didn't want to give her PN as she didn't have IF and had a functioning gut so thought it not indicated & he thought disuse would lead to atrophy. Later in his testimony he described two scenarios where PN might have been considered as a temporary "bridge" to a treatment: (a) if it was felt there was a reactive or primary psychiatric condition or (b) if Strain succeeded in placing her onto this experimental treatment trial in Germany he was investigating but even in those two cases he stated he would not have done it at that time in her case because he thought that they would not have been able to achieve sterile conditions & that would have been fatal.

At one point he did email Strain to raise the question of an "urgent psychiatric review in order to consider sectioning" for artificial nutrition - claiming, bizarrely, that he thought intact capacity was atypical with ME due to brain fog and cognitive impairment - but his colleagues were convinced that she had capacity. (I suspect that was a retrospective reimagination of what his real thoughts were at the time.)

There has been a little further BPS-esque pushback from Max Pemberton in the DM: so as not to drive traffic to the page here's an archive link (short four paragraphs starting "The inquest into" about 3/4 of the way through this commentary on another story). Others may remember why but I seem to remember Pemberton has long had a bee in his bonnet about ME.
 
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Screenshot of Dr Max in the Mail from web archive (thanks to nightsong)
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The BPS appear to be using the classic abuser tactic of DARVO (defend, attack, reverse the victim/offender) they’re just helpful reasonable guys trying to help! Nobody said it was a “made up” illness! Also ME activists send death threats <eye roll>
 
Dr Max writing in the Daily Mail said:
The current received medical opinion is that ME is the result of complex physical and psychological factors.

Most doctors working in this area are psychiatrists, yet some have received abuse and even death threats from a small number of ME activists who view the involvement of mental health professionals in this field as somehow suggesting that it isn't a 'real illness'
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So you admit it's just an opinion - no actual evidence? OK good. Most doctors working in this area are not psychiatrists, they are GPs.

But according to BPS, every illness is "the result of complex physical and psychological factors" - so why does ME/CFS uniquely have the "abuse and death threats" from activists?

Why not MS and FND? Why not fibromyalgia, post-treatment Lyme disease, or Gulf War Illness? Death threats from the latter group of combat veterans in particular would by definition be quite concerning.
 
SNT Gatchaman said:
So you admit it's just an opinion - no actual evidence? OK good. Most doctors working in this area are not psychiatrists, they are GPs.

But according to BPS, every illness is "the result of complex physical and psychological factors" - so why does ME/CFS uniquely have the "abuse and death threats" from activists?

Why not MS and FND? Why not fibromyalgia, post-treatment Lyme disease, or Gulf War Illness? Death threats from the latter group of combat veterans in particular would by definition be quite concerning.
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Imagine a patient group who are mainly limited physically by low energy, many are housebound. They’re not scared of us sending “death threats” they’re scared we’re intelligent and we can see the emperor is not wearing a stitch.
 
Trial By Error: Sarah Boothby’s Statement to the Inquest

"The two weeks of public hearings in the inquest into the death of Maeve Boothby O’Neill ended on Friday. (The coroner, Deborah Archer, plans to issue her findings on the facts this coming Friday.) Last Thursday, both of Maeve’s parents testified. Her mom, Sarah Boothby, took the stand first. She read most of the statement into the public record, omitting only the brief section that Archer had herself read out at the start of the inquest. (She also didn’t read out a list of questions for the inquest as well as references to support her account.)

Here is the statement as read into the evidence:"

https://virology.ws/2024/08/05/trial-by-error-sarah-boothbys-statement-to-the-inquest/
 
Andy said:
Trial By Error: Sarah Boothby’s Statement to the Inquest

"The two weeks of public hearings in the inquest into the death of Maeve Boothby O’Neill ended on Friday. (The coroner, Deborah Archer, plans to issue her findings on the facts this coming Friday.) Last Thursday, both of Maeve’s parents testified. Her mom, Sarah Boothby, took the stand first. She read most of the statement into the public record, omitting only the brief section that Archer had herself read out at the start of the inquest. (She also didn’t read out a list of questions for the inquest as well as references to support her account.)

Here is the statement as read into the evidence:"

https://virology.ws/2024/08/05/trial-by-error-sarah-boothbys-statement-to-the-inquest/
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Wow. Crying.
 
Andy said:
Trial By Error: Sarah Boothby’s Statement to the Inquest

"The two weeks of public hearings in the inquest into the death of Maeve Boothby O’Neill ended on Friday. (The coroner, Deborah Archer, plans to issue her findings on the facts this coming Friday.) Last Thursday, both of Maeve’s parents testified. Her mom, Sarah Boothby, took the stand first. She read most of the statement into the public record, omitting only the brief section that Archer had herself read out at the start of the inquest. (She also didn’t read out a list of questions for the inquest as well as references to support her account.)

Here is the statement as read into the evidence:"

https://virology.ws/2024/08/05/trial-by-error-sarah-boothbys-statement-to-the-inquest/
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To have such grace and dignity after enduring such an ordeal is truly inspirational.
My heart goes out to Sarah, Sean and family and the injustice they have suffered .
I sincerely hope that the change they desire for others can be instigated and Maeve' s suffering can both be acknowledged and a catalyst for change .
 
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