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

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NHS staff have all been put on training about looking after people with autism and learning disabilities, which covers sensory processing issues and listening to people when they can't communicate in the way the staff want them to, listening to and involving carers, etc.

There are a few levels of training, for different roles.

Some of the principles overlap here, when I read what happened to Oliver I was also thinking of the cases of people with severe ME being neglected and abused in hospitals.

Eta: evaluation slide pack (particularly look for 'behavioural changes'
Eta 2: what happened to Oliver

 

And herein lies so much of the problem. Ranty person (whoever they may have been...) used their influence in order to sway NICE to disregard the evidence at the 11th hour and is granted anonymity. If one were to even speculate on their identity one might get sued into oblivion.

The scale of the harm that has been caused by BPS is difficult to even comprehend and the state still protects these people from the consequences of their own backdoor meddling.

 

That is such a good point @ukxmrv, about all the doctors deciding that NICE guidelines are none of their business because ME/CFS isn’t their specialty.

It’s funny how they very much so made it their business before it was updated, isn’t it?

I’m so sorry to hear of your own experience with cancer & ME in the NHS.

Yes actually the NHS doesn’t grant people access full stop. They serve temporarily unwell in a way that isn’t easy for these people to access either. It’s just not set up with debility in mind.


One example, one of my local hospitals, had a new build unit where the doors to consultation rooms were not wide enough for the standard hospital wheelchairs to squeeze through without ramming you into the side and tipping the chair ever so slightly.

Window less rooms with ancient air conditioning. No respirators for staff treating sick people in a pandemic would hit the other end of the scale.

 

Bit of a sidebar but I just want to point out that this in combination with my doctor's gaslighting was a big factor in me doing couch to 5k and ruining my health. I have a diagnosis of autism and at the time there was a blanket ventilator ban for anyone with that diagnosis. So I attempted to 'improve' my health in order to have better covid outcome. Ironically causing me to have an unimaginably terrible covid outcome where I descended from the housebound state GETing myself had put me in into very severe ME with added neuro long covid.

Anyway knowing that the state had judged me unworthy of saving was psychologically crippling. NHS eugenics was out on full display in 2020.

 

I do think that at the heart of Maeve’s case was the fact that they didn’t consider her worth their full time attention and resources.

She was too vulnerable to their mercy. Too sick for too long for them to respect and respond to. It was un-realistic for her be so unwell she couldn’t eat, with no obvious cause. She’ll cope.

They have patients with hope of recovery to attend to just now.

Then suddenly she’s too far gone too sick to live.

There are countless inquests for people who have died from anorexia on eating disorder towards. Anorexia is very dangerous itself. But often in these documents failure of care is referenced including hostility and blame towards the patients for not getting better.




2020….
Yes it was.
I’m so sorry.

The speed at which the ever present insinuations and lurking threat became,
know your worth cripples.

I was literally weeping on the phone to family and friends because they thought my severe early 2020 Covid infection would be treated in hospital if I went in, which four doctors had told me was my next step if my breathing problems further worsened, and that I said no they won’t, or only if they don’t read my notes and find how severe my ME is, and family were trying to reassure me talking to me like I was insane or paranoid from too much exposure to disability politics, I was pleading with them to actually look up the official government documents. So that they could understand my position and console me.

In the end I think they just couldn’t understand that because they thought I was worth saving the actual health service that they too relied upon and needed to trust, would explicitly state an an intention to sacrifice me for a presumably more economically productive unit.

They were not of the surplus population. I was of them so how could I be one of the disposable?

In years since there has been no addressing of this killing time, simply an escalation.

RIP My LD brothers and sisters I haven’t forgotten.

 

How convenient for them, since ME/CFS isn’t part of any specialty. They can all just wash their hands of us.

 

Sorry if this has already been posted:

https://www.bbc.co.uk/news/articles/czrgmdv4z0go

Treatment changes urged after ME patient's death

Maeve Boothby-O'Neill, 27, suffered from severe chronic fatigue syndrome for a decade before she died at home in October 2021.

An inquest in Exeter heard she had been admitted to the Royal Devon and Exeter Hospital three times that year for treatment for malnutrition.

The hearing focused on the last few months of her life, by which time she was confined to bed, unable to chew food and had difficulty drinking because she was not able to sit up.

Devon coroner Deborah Archer concluded Miss Boothby-O’Neill had died from natural causes "because of severe myalgic encephalomyelitis (ME)".

"In conclusion there is no known treatment of ME," she said.

"The reality of this case is it is not possible for me to say if any treatment could've halted her decline - I hope lessons will be learned in the hope future deaths can be prevented."

 

That ‘hope’ word concerns me from someone charged with making recommendations one way or another on a prevention of death order on this in a short while.


I hope I am over thinking or misinterpreting, but it sounds a less firm proclamation than I would like.

Maybe this is just the convention, the personal moment part and there is stronger language elsewhere.

 

I haven't listened to all of this yet but I am told that Matthew Wright said words to the effect that the WHO classified ME as a neurological disease in 1969 but in ICD-11 it is classified as a Postviral fatigue syndrome.

This is a misunderstanding on his part of the structure of ICD-10 and ICD-11.

To clarify: since 1992, when ICD-10 was first released, "Benign myalgic encephalomyelitis" has been classified under G93.3 Postviral fatigue syndrome (known as the "Title" or "Parent" category) under category block: Other disorders of the nervous system > G93 Other disorders of brain, in Chapter VI: Diseases of the nervous system.

For ICD-11, "myalgic encephalomyelitis" remains in the Diseases of the nervous system chapter (now Chapter 8).

The category block: Other disorders of brain has been retired for ICD-11 but "myalgic encephalomyelitis" remains coded under category block: Other disorders of the nervous system. The "Title" term remains Postviral fatigue syndrome (with the ICD-11 code, 8E49).

So the relationship between the terms hasn't changed from ICD-10.

What has changed is that Chronic fatigue syndrome has been located in the ICD-11 equivalent of the Tabular List, whereas for ICD-10, it remained an Index term. Also for ICD-11, the prefix "Benign" has been retired as it has been for the final update of ICD-10, in 2019.

Edited to add:

In ICD-11, ME and CFS are known as "Inclusion terms" to Parent category, 8E49 Postviral fatigue syndrome.

In ICD, Inclusion terms may refer to different conditions; or may represent more specific conditions or can be synonyms to the "Title" or "Parent" term under which they are classified.

ICD-11 includes no criteria, definitions or textual descriptions for any of the three terms coded under 8E49 nor WHO's understanding of the relationship between these three terms.



https://twitter.com/user/status/1822294119919595740


Adam @ABrokenBattery

23h
Highlights from the powerful introduction by @Matthew_Wright
at the start of his segment on #MECFS today following the Inquest into the death of Maeve Boothby O'Neill who died of malnutrition caused by Severe ME.

-------------------------

Also on YouTube:

 

Does anyone know what BMI and calorie intake Maeve had when Roy decided not to use jejunal feeding or TPN?

 

Yup. It's thoughts and prayers that things could change, from the people who could change things but decided against it.

Always rings completely hollow to me. A lot like politicians who speak out after they leave office, about things they could have done something while in office. Funny how that works, people with power are helpless, but the powerless are the ones accused of not even trying.

 

I feel such

 

First a disclaimer. I have no legal training, but can read and sometimes but not always correctly interpret some of the meaning in what I read.

The link below takes you to a very simple and clearly set out description of the rules and guidance Coroners have to follow in order to arrive at their conclusions.

https://www.hempsons.co.uk/news-articles/how-coroners-arrive-at-their-conclusions/?cn-reloaded=1

Her conclusion (finding of fact) with regard to cause of death is that M died from Natural Causes ie

Malnutrition as a result of the disease severe ME.

This is an unambiguous finding of fact that M’s death is ‘the normal progression of a natural disease or illness, where a naturally recurring disease runs its full course without any significant amount of medical care or human intervention’.

As to the question of Neglect the guidance make it plain there is a very high bar to clear in relation to establishing that not providing or providing any particular medical care was a definitive causative factor in the patient's death. I have not seen or read all the Coroners determination of the facts with regard to this, but consider it is reasonable for me to infer from the physical cause of death verdict given and her finding of no Neglect, that she considers that M died from a physical disease for which the cause is unknown and that there are no known treatments that can universally prevent that final outcome.

From what I have seen reported it indicates she considers that without knowing causation of the disease and symptoms, all the possible treatments considered were untested and experimental in nature, especially with regard to the presentation of multiple intolerances which are a feature of the disease ME. M physically exhibited those intolerances reacting badly to the Hospital environment and the treatments actually tried. They therefore carried unknown, substantial risks and burdens in that no one could predict success or that M might not be made worse by them. The distinction between the greater freedom of action that Dr Weir as an independent Consultant may have in his prescribing to that of the Hospital staff who must stick more to established protocols is, I think, a valid fact for the Coroner to draw out in this regard.

I am fully aware that some patients are prepared to take considerable risks (we did in desperate circumstances) and fully respect their prerogative to do so with those medics prepared to bear the risks in so treating them.

For me the Coroner has made a clear legal finding of fact that ME is without doubt a natural physical disease leading to death when running its full course. That was the finding of fact (without an inquest) agreed by a different Coroner when my wife died of Inanition (Starvation) due to ME in a Hospice in October 2019.

The current Coroner has also, I believe (from the reporting I have seen) found as fact that there is no known universal successful treatment, and that ‘unevidenced’ medical care (whether psychological or biological) for ME may add to the suffering and burdens born by the patient. She has indicated she may well have recommendations to address this situation if the evidence to be presented in late September indicates this and other concerns has not already been sufficiently addressed.

ME is a very complex serious illness with no easy answers. As many on here keep pointing out we need good scientific studies to quickly test and validate possible treatment suggestions for ME before they are mandated for wide use. The current system of, well try this or that or anecdote only muddies the waters. It added considerably to the burdens carried by my late wife and others. The BPS treatments of curative GET and CBT are a huge example of this. We should not repeat this example in biological medical care which means getting medical science interest and the research grants to do the job.

This Coroners findings of facts and others before her will help open ‘medical eyes’ to the physical reality of ME and its natural course in those who unfortunately go on to develop sME.

 

Thank you for going through the information for us all.

I don’t think that her conclusion of natural progression of the illness necessarily points to the nature of the illness physical or otherwise though.

 

In yesterday's Guardian there was a double-page feature:

 

It is, but we have to remember that the hospital wasn't treating ME. It was—or should have been—treating malnutrition.

The fact that it's malnutrition in the context of severe ME does complicate things, of course. But I'm left with the overriding feeling that if the doctors had been clearer about what they were treating, and what their treatment objectives were, Maeve's care would have been better.

Doctors have to treat insufficient nutrition in all kinds of contexts, some of them quite difficult. But they don't seem to lose sight of their objective as they did here.

 

See post below:


The Coroner specifically said that ME was physical not psychological which will be recorded in evidence I believe.

 

Oh good. Thanks!


I don’t know where that leaves us exactly. I guess it depends how she backs up that. Is it medical references?