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

Trish said:
Thanks for the link. I think if you want to read a summary of the first week at the inquest, this is probably the best article. It places Maeve's own words at the heart of the article and raises all the key points we have been discussing really clearly.
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I noticed that it refers to "at least 750,000 Britons" who suffer from "this mysterious illness, also known as chronic fatigue syndrome [CFS]"

Is this a misprint, or a result of re-evaluation?

Added shortly after: Here's the link again:

https://archive.is/20240727060407/h...rrible-illness-that-divides-doctors-9mkzk7rxx
 
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SNT Gatchaman said:
Yeah the idea that GET caused more severe presentations is a good one. I hadn't thought of this. I don't think it's a requirement though, eg I didn't see reference to Physics Girl doing GET before she became severe. However there's possibly an element of self-GETing that may even be a bigger factor. Going to the gym as a general activity that "most" people did is new phenomenon, starting in the 80s and picking up through the 90s to be very common today.
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From her descriptions and her husband's, she was definitely self-GETting. Most of us have, it's the natural thing to do.

In the early days of LC this was everywhere. One of the most notable things I saw is that the vast majority of people naturally do all the things that biopsychosocial ideologues are pushing. I'd say easily 80-90%. They eat better, they exercise, they reduce stress and mostly: they push through with a mindset of "I will not let this slow me down".

By contrast when you read stuff from 3-4 decades ago it was all about the opposite and even MDs were advising convalescence. And since the reversal most MDs have advised to push through, and indeed we have seen a significant worsening. It would however be impossible to do a comparison because we don't have any reliable historical data. Entirely as a choice made by the medical profession, based on the absurd belief that it 'medicalises' the issue and likely makes things worse.

Which all goes back down to what most MDs testifying have said. They have been coached not to say that it's psychological because they know it cannot be supported by evidence, but it is the model they operate with. They know they have to lie about it, which should tell them plainly how obviously wrong it is, but because of the intense "us vs them" mentality their failure instead reinforces their beliefs, exactly like people who fall down conspiracy holes.

Even with a breakthrough that leaves this all behind and proper investigations are made, we'll never be able to say for sure whether things have gotten worse because of systemic dereliction of duty. But it certainly fits all the data we have.
 
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Trish said:
Can someone post a link to an archived version.
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From the article:
The eventual admission that doctors could only keep her “alive, not living”
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Imagine if they understood that this is most of us. I am technically alive, but I have not lived in 16 years. I am far from Maeve's level of illness, but I am still much farther away from the normal live I used to enjoy before, actually much closer to Maeve than to my 75 year-old mother who had a heart attack in the Spring.

In no way am I living in a real sense. This is moderate ME/CFS. They can't even see the level of ME as severe as Maeve's as a real medical problem, even though their description of the situation is no different with mine and that of millions. The scale of medicine's failure is simply staggering.

The most common excuse I see from MDs complaining about this being reported (they seem to have zero issue with her death, choose to blame her) is that they don't understand why she was that ill, what pathology explains it. As if their understanding is a necessary blessing on its reality. This can only be explained by failure of training, it's completely abnormal to be this wrong and have such rigid dogmatic hang-ups in any professional context, to the point of leaving millions to suffer and who knows how many to die prematurely each year.

Also this needs to be framed correctly:
“There are still people in the medical profession and out there in the community who are still adhering to the dogma. Sadly that has a very damaging effect on understanding ME.”
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Enough of this crap. The problem isn't "some people", it's a systemic problem, MDs are taught this stuff, it doesn't happen by chance. This case screams of systemic failure and yet there is often this framing as if it's just a few laggards. The fact that they have been coached to not say what they actually think says it all. Health care systems are pushing an ideology that they know they cannot defend. And still they defend it, in large part by lying about what and why they do things. It's lies all the way down.
 
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rvallee said:
From her descriptions and her husband's, she was definitely self-GETting. Most of us have, it's the natural thing to do.
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Yep. And when it comes to medical advice, it doesn't even have to come under the official banner of GET to maim you. I started to have (mild in hindsight) symptoms of abnormal fatigue and prolonged recovery from exertion back in 1993-1994. Back in those days in the country I was living in no one had heard of such a thing as ME, CFS, GET etc. and the official diagnosis was "nothing is wrong". But the recommendation was still to exercise no matter the symptom. Heart palpitations? Exercise. Fatigue? Exercise. Sore throat and low-grade fever for a decade? Exercise. Every doctor I ever saw for any symptom told me to exercise. That was the era when the cult of exercise in wider society and medicine really started to gather pace. I'm sure countless lives have been destroyed by gym memberships etc.
 
dave30th said:
That could be. I understand that meaning and it could be what he meant. But it didn't sound like that to me in the context. It sounded like an inartful way of saying that she wouldn't be able to digest normally afterward. ADD: Perhaps it was ambiguous and he meant both at the same time.
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dave30th said:
That could be. I understand that meaning and it could be what he meant. But it didn't sound like that to me in the context. It sounded like an inartful way of saying that she wouldn't be able to digest normally afterward. ADD: Perhaps it was ambiguous and he meant both at the same time.
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In my country, the Netherlands I know the term medicalisation in the context of giving birth. Some health authorities were fearful when developing a new guideline for birth care that births would be medicalized as opposed to natural births without medical interventions.

So my understanding is the same as prof Edwards, they wanted her to eat on her own without medical intervention
 
dave30th said:
https://virology.ws/2024/07/27/tria...ervice-and-in-medical-education-and-training/
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Thanks, Dave. Very good summary, as ever. My only criticism, as I think I’ve suggested before, is that some people might be put off by the occasionally coarse language (eg “crap” and “fucking”). This may be partly an English thing – a bit like the coffee incident at the inquest – but we can’t change that. I appreciate that this is a blog, and that you use more formal language in other publications, but I think it’s important to be mindful of who we need to enlighten and how they might respond to the language we use.
 
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Reading Dave’s original piece has helped me visualise a timeline.
https://www.codastory.com/waronscience/chronic-fatigue-syndrome-long-covid-unexplained-symptoms/
Dr Shenton recommended tube feeding in March. Hospital discharged same day. Hospital DrWeir recommended tube feeding in May. Hospital didn’t try until mid July
This will all be in writing in the evidence bundle.

ETA The Drs sound plausible-ish on the stand, but weighted against the evidence I think the Coroner will see what we see.
 
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Robert 1973 said:
My only criticism, as I think I’ve suggested before, is that some people might be put off by the occasionally coarse language (eg “crap” and “fucking”).
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Hey Robert--I understand. And I'm never sure. Maybe it's counter-productive for some but invigorating for and appreciated by others. But at some point I need to be myself and express my feelings directly--especially on a blog post. And given the dire consequences in this case, I think "crap" and "fucking" are relatively mild. And yes, maybe there's a trans-Atlantic difference.
 
Given the broader context of how the biopsychosocial ideology has become dominant in the NHS, applying a 100% psychological model of "chronic fatigue"/functional whatever and how the contextual notes from the MDs involved explicitly make it clear that this is what they think and based their clinical judgment on. Then given how when asked direct questions they clearly all answer with canned coached answers that skirt around the question.

This suggests that they have been coached to lie about why they made the decisions they made. Knowing that they are indefensible. That everyone involved knows they have been coached to lie in public about the private decisions they made. Even the ones they recorded as such.

This is as clear as consciousness of guilt gets. We know what they think. They know what they think. They can't admit to what they base their decisions on, because it cannot stand scrutiny. And still we know they will continue to make such decisions on the same indefensible basis, content to lie in public about why they made such decisions, because the truth is so much worse, and likely very litigable.

Of course this was always inevitable. You start with a lie, you have to keep lying. Then you have to lie about the lying. This leads to the use of coded language where everyone understands what the code means, but they continue to lie anyway, because they cannot admit in public what they think privately, what they base their professional judgment on.

This is not how experts work. This is the opposite of how experts work. And by "work" I mean here achieve better outcomes than either chance or doing nothing. There is no other possible outcome than massive failure. The outcome is massive failure. This is even recognized in part in the context of Long Covid, which continues to be ignored and discriminated.

What a freaking nightmare this all is.
 
dave30th said:
Hey Robert--I understand. And I'm never sure. Maybe it's counter-productive for some but invigorating for and appreciated by others. But at some point I need to be myself and express my feelings directly--especially on a blog post. And given the dire consequences in this case, I think "crap" and "fucking" are relatively mild. And yes, maybe there's a trans-Atlantic difference.
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I'm fine with judicious use of swearing in a blog. There is only one swear word in the whole article and it seems to me to be wholly justified and I find helpful emotionally, as it expresses David's solidarity with all of us in this dire situation. And I'm an elderly middle class woman who some of you might expect to be offended by swearing. I'm not when I think it's justified.

If it were a media article I think that would be different.

Kitty said:
I think there is.

In my local idiom it would be "shit-science" instead of "crap science". And "no fucker had any idea". :whistle:
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Interesting, I'm more familiar with the phraseology used by David than your version.
 
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