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

Thread here, Life-Threatening Malnutrition in Very Severe ME/CFS, 2021, Baxter, Speight, Weir

 

oh poor them. I guess the only potential thing - which I don't recommend anyone does - for the type who does that is to trawl back to the however many years ago they started saying those tropes just in case any newbie reader reads it as something that 'happened recently' rather than an unsubstantiated 'line' that they started using just after PACE was debunked? Unless it is something I've missed that has happened to one of them recently?

To me it now just now reminds me of the stuff you hear from the post office inquiry where there was an email round-robin between the protagonists about a TV programme 'on the issue' , talking about whether 'the pwogramme was actually kwite nice to them, and noted how hard done by they might have been - "good job to Jimster in communications" '. Whilst (now with hindsight we know this was at the same time as) more subpostmasters went on trial, were in jail, died, went bankrupt etc.

 

M, as my late wife did, asked for clear medical care systems and safety nets to be put in place before they could consent to further medical treatment. Instead as per this quote:

I have noted the following particular details reported in the press and other sources from the written and other evidence provided to the Coroner.

‘The inquest at Devon coroner's court in Exeter heard that there are no treatments and no specialist units anywhere in the country to help anyone with severe ME.’

Dr Shenton was reported as having commented/written:

‘that several doctors did not accept that ME was a medical problem over the time she knew Maeve.’

'As a young woman in such a perilous condition she was potentially a candidate for every level of support, but I remained uncertain as to the medical plan.’

'I was trying to balance this with helping Maeve control her symptoms and provide the holistic care to ensure a good death if she were to die.’

‘Clear systems with appropriate safety nets ought to be in place for any patient who has a condition for which there is a lack of evidence and/or a lack of guidance about best practice.'

Dr Shenton reported that just days before Maeve died, she wrote in an e-mail about the nurses: 'This is so far out of their comfort zone...the first time people come across this case there is doubt and misunderstanding and it seems to take a variable amount of time for the penny to drop this is ME.

'It can take months/not at all.'

For M and my late wife, in the end those ‘months /not at all’ needed by many HCP’s to realise the seriousness of the situation were not a possibility they could survive or to which they could/ did ‘consent’ or were in many instances even given the opportunity to ‘consent’. They could only endure as best they managed. It clearly caused very avoidable additional trauma and distress to them, their families and to other HCP’s caring for them.

The DSS (now the DWP) Doctors when asked in the early 1990’s to explain their psychological view of ME/CFS at law to a Social Security Commissioner concerning the refusal of Sickness Benefits to a ME/CFS patient diagnosed as biological/physical by their own Doctors, could not do so and they still cannot do so today.

The denial of the physical medical reality of ME/CFS has been consistently found in these and other legal settings, since at least the early 1990’s, to be unsustainable and having no reliable evidence to support it in the first place. The continued Health Profession application/use of this (failed) psychological diagnosis of ME/CFS since then makes it all the more shocking and completely neglectful of the existing and growing evidence of resulting actual/potential trauma and harm experienced by ME/CFS patients and their families. I have experienced that resultant trauma and harm first hand from being the carer of a person with s,vs ME/CFS.

That this situation (especially in the UK where in very large numbers of cases the psychological diagnosis of ME/CFS has failed to explain itself at law), it has remained a prominent and continuing (failed) individual HCP response to ME/CFS, is completely incomprehensible to me as a person and UK citizen.

I await with hope but also trepidation the Coroners own finding of the facts in M’s case. I feel, from my own personal experience in similar circumstances it could and should have been managed medically so much better to avoid the additional trauma and distress to M and her family, so clearly described in their own and others evidence presented to the Inquest.

We all need to consign that ‘variable time/not at all’ in accepting the physical medical reality of ME/CFS by individual HCP’s to zero. Not doing so is preventing the finding of better answers and the provision of more compassionate, not to forget ‘more effective’ and possibly ‘life prolonging medical care’ for ME/CFS patients.

It is too late for all those we have already lost, but ME/CFS patients and their families do deserve so much better than the appalling standard of health care for ME/CFS in the UK as revealed at this Inquest.

 

Yes on some level they know they are charlatans, and they are terrified of a biomarker that exposes them as such, or a treatment that returns pwME to the public sphere to tell the general public precisely what happened to them and why.

 

If there's ever been a more obvious exception to this, it'd be terrifying. The last 5 decades have shown plainly that this rigid mantra creates problems, and probably nowhere has it created more problems than for us. We are basically in a state where people are waiting to fulfil their most basic duties simply because they can't, themselves, agree on what to call something. Absurd. Childish. Incompetent. Derelict. Especially considering how everything about us is exceptions to rules and norms, but only if they're bad for us.

This is a common issue in programming. Programmers deal with information. Names are information. We spend a lot of time thinking about what to call things, variables, functions, etc. What we certainly don't do is fail to deliver critical projects, for decades, simply because of BS like this. That's the kind of thing that leads to an entire department getting shut down. In medicine? Awards. Very different approaches.

In the absence of a good alternative, and there clearly isn't one here, a neutral name should be the default, the plan B. There is no plan B. Instead a terrible pejorative, and misleading, name was chosen, which is even worse. If someone's name is not acceptable, than there has to be an alternative. This is textbook letting perfect be the enemy of... well not even good this is about the most basic form of common sense.

And this has consequences. As we saw with Maeve's case, where hospital doctors let a poor woman die of starvation because they can't find specific instructions for this specific diagnosis, which they reject, even though there is a general set of rules that apply here, but those were exempted.

Not that we can do anything about it, but this is in the same category as not sending emergency services because someone didn't say please and thank you. We expect better of children. In fact children generally do better than this. It takes major flaws in training to take some of the smartest professionals in society and make them, at times, far less capable than children for reasons that even a child would find, and rightfully call, stupid.

 

Trial By Error: Sean O’Neill’s Inquest Statement

"Last Thursday, both of Maeve Boothby O’Neill’s parents testified at the inquest into her 2021 death from ME-related complications. (I earlier posted Sarah Boothby’s statement as read into the record.) It was the penultimate day of two weeks of court sessions in Exeter, in the south-east of England, UK. The coroner, Deborah Archer, is scheduled to release her factual findings this coming Friday.

Archer presided over the proceedings with a firm hand while exhibiting enormous compassion for both parents at key moments. As Sean O’Neill began reading his prepared statement into evidence, he paused. Archer immediately offered to read the statement herself–an offer he accepted quietly and, it seemed, gratefully.

Below is an edited version of the statement as read out in the courtroom."

https://virology.ws/2024/08/06/trial-by-error-sean-oneills-inquest-statement/

 

Naomi Whittingham has written a stunning blog post:

"Why Maeve's Death Must Bring Change"

quote:
It will come as a shock to the wider population that, in 21st century western society, someone could starve to death through lack of medical intervention. To those of us who have lived this reality for decades, it is no surprise at all.

https://alifehidden.com/2024/08/06/maeve/

 

I see from x Twitter -Janet Dafoe, that Whitney Dafoe has written a letter to the Coroner [presumably about how he has been kept alive by enteral and parental feeding) but he doesn’t know if it can be used as evidence as he’s not part of the case or in the UK. Good of him to try.

 

They may be concerned that they will be held to account for promoting unscientific theories and unevidenced, ineffective, harmful therapies, but I don’t think the are terrified of a biomarker.

For all the harm they have caused, I don’t believe that they intended to cause harm – even if they have appeared insouciant to patients’ suffering, and prioritised careers and reputations over patient welfare. I think they would probably be pleased to understand more about the pathology and for effective treatments to be developed.

They may still try to argue that their therapies work, and they will almost certainly try to justify the approach they have taken with familiar arguments that most of us can predict. The question is whether they will get away with it. I suspect they will but I hope I’m wrong.

I’m not interested in retribution but I hope that individual and collective mistakes and ethical breaches will be acknowledged, and appropriate action taken to prevent further harm. I’ve said this many times but I would try very hard to forgive anyone who offered a full and sincere apology.

It would be nice to believe that medicine will learn from the mistakes that have been made but the history or psychosomatic medicine does not inspire confidence.

 

I remembered today that Bob Courtney had issues with nutritional intake and that he was actually sectioned.

And Naomi's writing about how care and compassion should be a given echo Bob's writing from 6 years ago.

You can find him posting about his experience here, https://www.s4me.info/threads/bob.1068/page-2#post-41205

ETA: Removed quotes from a members-only thread.

 

Thanks. In case it wasn't obvious enough, I was quoting selected sections from his own post (in a members-only thread), which can be found here, https://www.s4me.info/threads/bob.1068/page-2#post-41205

ETA: Now removed quotes from my previous post.

 

I already posted a link to Bobs experience, without actually quoting him, as it is in a members only thread, and as he is no longer with us we cannot ask him if it's OK to use.

https://www.s4me.info/threads/maeve...e-death-and-inquest.31707/page-16#post-544819

 

They would yes.


Although there are occasions where HCPs do trust their colleagues and lose their children to the watch and wait approach against their own reservations.