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

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

 

This ITV report is almost identical: https://www.itv.com/news/westcountr...-sufferer-to-remain-in-hospital-inquest-hears

I wonder what the source was. Very poor journalism.

 

Possibly coached by the SMC, to make it fit their bias?

 

Has anybody got any good points to include in a complaint? I suppose the issue is simply that they focus on her decision out of context and it makes it easy for the reader to think she chose to die, which is wrong

 

https://virology.ws/2024/07/27/tria...ervice-and-in-medical-education-and-training/

 

@dave30th In the 4th paragraph - do you mean 'bogus' ?

'This bougs perspective has been based on the views of a powerful cabal...'

.

 

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.

 

yes, thanks! My copy-editor needs to be fired!!! Also "Inquests" in the headline.

 

From the article:

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:

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.

 

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.

 

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

 

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.

 

Excellent Dave!

 

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.

 

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.

 

I think there is.

In my local idiom it would be "shit-science" instead of "crap science". And "no fucker had any idea".

 

I'm a northerner. With Irish influences.