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

Perhaps try to ask on XTwitter?

Form the screenshots posted here I think the x account of ME Advocates Ireland / 'meadvocatesire' could be in.

 

seems they threw everyone out, then people went back in and only those who did it quickly got in, and the rest locked out. Really sucks. It's hard to believe the IT people in Exeter don't know how to mute everyone's mic except for those who are testifying or speaking in the courtroom. This seems like it should be elementary and not complicated.

 

"not advising from any position of authority"

Nah, just some random passerby noting that someone's got their fly down. No authority here, as a GI consultant on a eating disorder ward with a case of progressive starvation. Basically zero authority here. Might as well be a poster on the wall.

You see this reflected throughout the whole case: people being given power without responsibility, or being responsible without having any power. In a functioning system that cares about outcomes, this would lead to internal investigations and clear recommendations. Confusion over basic notions of who is even responsible are typical and unacceptable because they pretty much always lead to failure.

That to them it can be "unclear" as to whether this is psychological makes it plain and obvious that no one can tell the difference anyway, making the entire premise of this asinine "gut-brain" euphemism for psychosomatic entirely invalid. They seem to refrain from making decisions largely based on possible hypothetical, fantasy, future harms, while ignoring the very real harms in front of them. They are distracted by nonsense while shirking their duties, but it's actually a stretch to say that they shirked their duties, as it appears that they actually have none, that no one has any.

The truth is that it's OK to let people die if there's any doubt that their problems are psychological, which they cannot even determine by their own admission, but will let it guide their entire decision-making anyway. All it takes is a smidge of doubt. The opposite of "beyond any reasonable doubt", all it takes is the mere possibility of a doubt, however delusional.

As most reports about how chronic illness cases are mishandled, this is basically anatomy of a disaster, a system unable to perform some of its most basic functions simply because it is distracted with ideological concerns of no importance or relevance. And it likely won't make a damn bit of difference because the system is so dysfunctional that it has no ability to evaluate itself. Just as it has no ability to evaluate the basic premise of their garbage biopsychosocial ideology. They care more about there being no blame than horrible outcomes for patients.

 

Seems a lot like the background story for every weird rule printed on a wall somewhere that most people would read and think "now why the hell would people need to be told not to do that?!", and it turns out that they do because some did exactly that, enough times to merit being written down.

And then there's the fact that rules are largely irrelevant in any system of rules, it's the enforcement that matters. Here there definitely are rules that would have safeguarded Maeve, but they were not enforced on arbitrary grounds supported by fears rooted in ideology.

 

I managed to get back in after the disconnection, and started jotting down notes again. I'll just make three brief observations:

* Dr Prague kept talking about encouraging Maeve to progress with "small incremental achievable goals each day". There did not seem to be a recognition that such incrementalism may encounter a hard limit with regard to ME. Also discussed "encouragement" in the context of achieving goals. Also mentions of the "worry" and "fear" that various activities would exacerbate her ME.

* Reading from the notes a mention that they had been made aware of

Spoiler

safeguarding concerns in relation to Maeve's mother, but Dr Prague, in her notes, stated that it seemed that if anything there was more manipulative behaviour from the patient rather than her mother. There was another reference from Prague in the notes about "manipulative behaviour in the context of ME but not an ED per se"

(!!). She tried to backtrack on this, saying that it referred to things like Maeve letting her know when she had had enough & needed people to stop talking. There was also discussion of (and disagreement with) Dr W's theories of reduced blood volume & lowered anaerobic threshold, as well as a discussion of his recommendations and why they thought most of them inappropriate.

* We heard a little of something that Maeve had written; from this it was notable that the NHS CFS clinic had previously advised her to make 20%/fortnight activity increments when not limited by symptoms, that Maeve had said that telephone CBT was not helpful for her and that she was continuing to deteriorate. Hearing Maeve's writing was very moving.

Non-sitting day Monday. Tuesday Stephen Blackburn, Christine Parker, Tori Richards (sps?). A discussion of when Hemsley can attend, perhaps around the time when the decision is handed down.

Although my jotted-down notes seem to have become very extensive again I'm not feeling well enough to transcribe them, so I'll leave it there for this post. Hope this helps a little.

 

Best I can tell, this is how the "first do no harm" slogan has been operationalized in practice, as a dispensation from doing most things on the ground that it could be worse than nothing, leaving the potential harm of doing nothing as a hypothetical for future historians of philosophy to ponder, perhaps. It has its merits, but not when taken to this extreme.

There is a huge middle ground between standardized clinical practice and the glacial pace of research that is entirely missing. Decision-making is paralyzed by hypothetical harms and the entire responsibility is left to a research process that is largely detached from reality, has zero urgency and, in this case, never actually produces anything useful, stuck in fanatical infinite loops.

At least in some cases. We know that health care services are willing to do many things outside the norm when there is pressure for it. The first 2 years of the pandemic were filled to the brim with that. It's just that it takes extreme pressure and circumstances for this to happen, and the learning/feedback mechanism appears to only function on a strict binary outcome of dead or alive. Overall medicine has pretty much learned nothing beyond the acute severe illness out of COVID, a completely abnormal situation for any profession.

When it's no one's explicit responsibility, it is everyone's responsibility, especially those in charge. Here it's not an issue of not knowing what to do, it's a matter of refusing to try, to exploit the gap in accountability in a manner no different than stumbling on someone in dire need of help, and simply choosing to close the door and walk away since no one's looking, so no one will know. This is a sort of weird amoral lack of object permanence, where immoral acts are made OK by endlessly pleading ignorance, while never bothering to learn more or seeing fault with willful ignorance.

 

Goal setting, graded eating therapy, all the usual nonsense. These people will just never get it.

 

Having been in a situation where I was down to just a few hundred calories a day of liquid diet due to severe ME/CFS in the past, I can confirm that the gag/cough reflex starts to deteriorate as you start to move toward the very severe end of the spectrum. I was often finding myself choking on everything including saliva.

 

She seemed very sympathetic at the start but there were a few comments which led to a different thought process:

- we suggested that she might try and wash her hair and clean her teeth tomorrow
- she was managed to take water from the sponge swab that her mother was providing her with so her suck reflex was obviously functioning.

I am writing these from memory so please don’t dissect the sentences and do take them as the general impression I was left with

 

Re:

I don't know if anyone has mentioned thinking the same thing I did when I saw that, maybe I've missed it, but what struck me was that of course, post-1980s was when CBT/GET started being pushed as so-called 'treatment' for ME; I've read numerous personal anecdotes of later sufferers saying that they were mild-moderate and able to walk and have some function, until after a course of GET resulted in them becoming worsened to the point of needing a wheelchair or becoming bedridden. Can this worsening of level of sickness of ME patients be tied to subjecting them to GET?

In my own n=1 experience of getting ME in 1983, the notion of subjecting us to CBT/GET didn't exist yet; the main advice was staying within the limits of activity we found the illness imposed on us and not exceeding them (later called pacing), sufficient rest, and very healthy diet. In those days, it was thought that the illness would subside and recovery take place within 2-5 years, and that was the case for me under those conditions. (Until I got struck down again 15 years later after another severe virus.) Now suddenly we have people getting, and staying, severely ill for decades, and it does make me wonder if GET is entirely to blame for that. Now that the current NICE Guidelines forbid GET as treatment, I wonder if the situation will improve? Except, of course, in the case of those practitioners who have chosen to ignore the new guidelines and carry on with GET.

 

An interesting article from PULSE (a GP publication )

“Behind the headlines: A case study in how the press can blame a blameless GP”

Pulse examines the media coverage of the inquest of a woman with ME as headlines abound blaming her GP. Maya Dhillon looks at the case and questions why these dangerous headlines are being used

https://www.pulsetoday.co.uk/analys...dy-in-how-the-press-can-blame-a-blameless-gp/

 

I didn't think that the articles I read were particularly aimed at the GP. Nor did I think that the message from Maeve was damning of the GP.

Perhaps not being a doctor gives me a different perspective and I see the headlines and articles differently

 

So as best as I can tell from the testimonies so far:

1. The hospital doesn't think any of it was wrong and is defending the actions of their MDs
2. The hospital MDs think they did nothing wrong, pleading ignorance of severe ME
3. None of the hospital MDs have learned anything since about ME, did not even bother to check or prepare much beyond being medico-legally coached
4. They will do it again the same way and feel like they don't need to learn any lessons out of it (vague commentary about it aside)
5. This is only valid in cases where they believe the cause is psychosomatic / self-inflicted (they are clearly operationalized as equivalent)
6. Therefore the issue of what they believe is critical to the entire case, as they only behave this way when they feel like they have full dispensation from normal duties and responsibilities, which appears to be the primary function of psychosomatic ideology

Give or take a few details, this is roughly it. It will happen again, the same way, for the same reasons. It is happening right now elsewhere, for the same reasons. Psychosomatic labels clearly afford total protection from malfeasance, one of many reasons why they are harmful and self-defeating.

 

I have come to this conclusion too. It is not that it will happen again, other people with very severe ME have been subjected to the same standard of medical care (or lack thereof) since Maeve’s passing, as has been repeatedly reported on social media.

Besides accountability, the lack of any sense of interest and urgency to provide proper care to people with severe ME and to learn more about the illness is distressing to see as a patient.

 

A valid hypothesis, hard to test, however. Worth noting that the case of the SARS-1 survivors in Toronto all went through very extensive rehabilitation regimens and all of them are still highly disabled.

It's entirely possible that some would still be heavily disabled, but it's likely that far more end up this way because of the fanatical obsession with the fear-based rehabilitation paradigm.

I don't know how we could possibly test this, however. It's very likely true, but medicine has no ability or motivation to test this in a unbiased manner. Not because of any technical limitations, they just don't want it to be true and anyone tasked with studying this would bias the outcomes, as is tradition.

 

Worse than that: in the notes she read she had clearly made an insinuation that Maeve's report that she was having difficulties with sucking fluid from her cup was linked to a specific event & was emotionally mediated. Again, she backtracked, saying it was necessary to record events that had occurred at a similar time, but it seemed to me that there was an insinuation that it was causal. She gave her opinion that as Maeve was able to swallow saliva, use the muscles involved in speaking and so forth that no new physical problem had developed and while what she described was physiologically correct she apparently did not consider the possibility that ME can produce fairly brief but severe diminutions in energy, in what you're able to do and there was no need to consider potential emotional causes of a temporary worsening. The lack of understanding of very severe ME continued to be palpable.

 

The irony being, obviously, that the inquest hasn't completed, and so it hasn't been determined whether the GP was "blameless" or not. "But hey – that’s not as catchy a news hook now, is it?"

 

Odd article, emblematic of the "us vs them" mentality we observe in medical forums. The articles don't blame the GP, they merely report the simple fact that despite what the article says, there is no secondary care available. Maeve begged her GP for help, the system has no provisions to help, the system failed her. Even the "specialist" clinics reject patients who aren't mild, so Maeve would have been, and probably was, rejected there as well.

What is being blamed here is a rigid system that arbors dysfunctional models to the point where they are OK with letting people die simply because the model allows them to do that without consequences. Very disturbing mentality going on here.

Accountability is more important to expert systems than training. Training can never cover everything, this is acknowledged in medicine by the residency process. As long as there is proper protocol to deal with mistakes and lessons are learned and propagated throughout the system, expert systems can function well even in areas where no one is adequately trained. But here this is disabled, turned off. It's an accountability-free context, which makes it fundamentally not an expert system.

No wonder the exact same mistakes keep being committed again and again. No amount of training can overcome that. Even worse, the training is largely at fault here, for teaching invalid models that bear no relation to reality, made even more harmful by a complete lack of accountability.