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

Phantom healthcare for ‘real’ diseases: when will ME/CFS and long Covid get parity?

Historically, medicine has had a problem with women, especially those who were not married. Sounds unrealistic? The nineteenth century wasn’t that long ago, and many diagnoses and treatments of physical illnesses were linked to women’s mental and emotional lives. Speculumism, clitoridectomy, and institutionalisation were all instigated because women’s testimonies were regarded as inherently unreliable. Today, medicine still has a problem with young women with severe ME/CFS and long Covid.

We are at a crisis point in medicine
We see Maeve Boothby O’Neill, Merryn Crofts, Alice Barrett, Carla Naoum, Karen Gordon, Millie McAnish, and Sophia Mizra all refused life-saving medical treatment because doctors convinced themselves that mental and emotional factors were involved in their ME/CFS, and their physical symptoms and personal accounts were disregarded.

Yet, the nub of this is if a doctor can’t tell the difference between anorexia & very severe myalgic encephalomyelitis they shouldn’t be in charge of these patients.


We are at a crisis point within our society regarding illnesses labelled as ‘medically unexplainable’, nociplastic, functional, or having a mind-body interplay. There is a fault line, a black hole that too many people are falling into, due to the dynamics between personal, systemic, and ideological flaws.

This is a morass where medicine is lost. Lost because it can’t treat or cure these illnesses. Lost because it can’t explain them. And many young women are paying the cost of this ignorance with their lives.

The clash we are witnessing on a very human front is the divide between individual responsibility and systemic failure.

https://www.thecanary.co/uk/analysis/2024/08/16/me-cfs-long-covid-maeve/

 

An excellent article, Claire Every is real developing a good understanding of ME, but will the people that need to read this ever see it or if the do take it seriously.

 

And the same old divide between belief and reason, between myth and science. At its core, it's about beliefs overruling the search for real, accurate knowledge about the universe and how it works. The old fallback to easy-but-wrong answers that seem superficially correct, but cannot ever make a single accurate prediction.

But with the extra difficulty that the reasonable scientists and their institutions have almost all accepted the mythical beliefs as being reasonable and equivalent to science. Even something as enormous as Long Covid isn't enough to make more than a tiny few uncomfortable about it.

The power of superstitions is really something. It can lead the profession responsible for health and life to sacrifice millions of lives and feel great about it. Which really puts in a different light all the atrocities in human history. No doubt made by people who equally thought they were right. Personally it has made me completely rethink them, including the worst examples.

At its core, it truly is a lack of empathy that causes harm. Not sympathy, as it's usually confused with, but the ability to understand that someone's different experience of life is usually valid, more likely to be rational behavior in the face of hardship than irrational behavior without a clear reason. It isn't long ago that most people, especially in professions like medicine, believed that there was such a thing as a criminal mind, irredeemable people who are just craaaaazy and will never behave in a civilized way. Things aren't much different today, it's just the size of the population it's attributed to that has shrunk, and we're part of the leftovers that passed through the moral filters.

 

One of the points that can hammer through the bullshit is the fact that her death was preventable. IMO most of them, probably all, understand that it's BS. They just say this because it lets them off the hook, because the system that employs them is OK with that death, and will do it again. They made a judgment, and that judgment was wrong. They let themselves be guided by fear of a possible death, and that guaranteed the death that actually happened.

Whether later TPN would have been too much for Maeve to handle by the end, all this means is that the decision that lead to her death happened sooner. I don't think the coroner's judgment will change, but the fact is still that her death was a consequence of poor clinical judgment and could have been prevented entirely.

This is one way to make the point clear, and could help Karen Gordon's case:

 

Sarah Boothby comments below David's summary of the inquest evidence

https://virology.ws/2024/08/15/tria...e-into-the-inquests-findings-and-conclusions/

"For a short time my faith in English law was restored by the disclosure of so much evidence. I trusted the Coroner when she said she had reviewed it all. I have reviewed it all and know what has been left out. Narratives are created by the order of the telling, what we include and what we leave out, the authority given to one character over another, the sympathy shown to the differing points of view. The full story of how Maeve died is what I had hoped the inquest would tell, founded on facts in disclosure and knowledge of ME. I hoped for too much, again. Again I am obliged to accept adequate funding for biomedical research – that produces verifiable evidence of disease – is the only route to us acquiring enough expertise for enough people to know how to safely manage ME."

Biomedical research- the only route for us to follow to safely manage ME.

 

thats a great title. I think the phantom healthcare is such a good phrase on so many levels. The pretend it’s something relevant and the dusappears when certain people go to access it and the catalogue we’ve seen in Maeves situation when it happened followed by the party lines given one by one at the inquest of ‘of course its real but we just didn’t know’ compared to perhaps what was actually behind it at the time

 

Original post removed because concern is being expressed that it should remain low profile until after 27th Sept so that influential persons should not have the opportunity to intervene.

 

'Trial By Error: A Deeper Dive into the Inquest’s “Findings and Conclusions” (Now updated with comment from Sarah Boothby O’Neill)'

By David Tuller

https://virology.ws/2024/08/15/tria...e-into-the-inquests-findings-and-conclusions/

.

 

#1467 amended. Request made that it should remain low profile until after 27th Sept.

 

Colleen Steckel provides a useful overview of information and articles relating to the inquest, see

Inquest into death of Maeve Boothby O’Neill
Cause of Death - Malnutrition Because of ME

https://colleensteckelmeiccinfo.sub...&r=28ramu&triedRedirect=true&utm_medium=email

 

In general, outrage doesn't get published in mainstream media about subjects which are considered to be niche subjects, such as ME/CFS. That all articles, at least that I read, reported on the inquest without giving a voice to the BPSers or otherwise psychologising patients represents significant progress.

 

I see the limitations of the inquest in a rather different light from Topple. If anything, William Weir threw the coroner under a bus (to use Topple's phrase) by focusing on his speculations rather than what was actually needed. As a result Archer was faced with none of the so-called experts present being able to give a coherent account of what should have been done. I was not personally present at the inquest but the analysis is not mine alone.

Moreover, Archer's point was that she was unable to judge whether or not Maeve might have died from progression of ME/CFS itself, regardless of being fed in the short term. If anything this is likely to draw on a misconception from Weir rather than the others - that somehow ME/CFS is a progressive brain disorder that can kill people through neurological failure.

In reality, what we know from previous cases is that people with very severe ME/CFS given feeding support do not deteriorate neurologically in such a way as to die anyway. Whitney Dafoe has had a terrible time but he is still well enough to write cogent letters of support. People with severe ME/CFS die from malnutrition and from suicide but as yet I am not aware of any other frequent cause.

 

[Not watched this myself]

Maeve Boothby O'Neill: the Chronic Collaboration speaks to Dr William Weir

"Maeve Boothby O'Neill died in October 2021 of starvation due to very severe myalgic encephalomyelitis (ME/CFS). After the conclusion of the coroner into her death, Steve Topple of the Chronic Collaboration speaks to Dr William Weir, who was involved in Maeve's case."

https://www.youtube.com/watch?v=JME4iroEIF8

 

Some of the best advice I ever received was from my first line manager after having just started working life. A project I had been placed on was running into several difficulties and looked like going off the rails. I was in a mild panic and turned to him for guidance. The first thing he did was to sit me down offer me a cup of tea and we chatted pleasantly for several minutes. He then explained to me that when you are in a hole the first thing to do is stop digging, and then you can come at it afresh and different angles will show themselves. He was calling a time out and that is what we did, returning to the problems afresh some days later and with new suggestions for going forward.

ME has been in a deep hole for all the time of my involvement with it, which covers the last 40 years and despite valiant efforts by many to stop digging and start afresh, far too many in all the constituent parts of our community continue to dig feverishly in the same useless hole(s).

For me, nowhere is this more evident than on the science and medical focus of investigating/treating individual symptoms (like fatigue or pain etc). Success whether imagined (Psychology) or temporarily (biologically) promising all ultimately have failed for one reason. We still know next to nothing about the underlying biological processes affected by this illness.

What we do know is that biological and psychological medicine are spectacularly unsuccessful in describing or showing understanding of the mechanisms involved in the biological physical reality of ME and that all suggested medical treatments currently come with particular risk for the ME patient.

This risk is much magnified, when the suggested treatments are accompanied by disregard of the underlying major symptoms of PEM and the equally frustratingly difficult symptom of a preponderance in sME towards the rapid development of uncontrollable environmental intolerances, including to chemicals, medicines, foods/nutrition, light, noise, touch etc.

All this continued digging in the same hole is exhausting for the ME patient and the more severe the ME, the greater the apparent immediate adverse effect on the patient.

This is something I think the Coroner picked up on in her ‘findings’ when she points out M’s rapidly diminishing available ‘energy envelope’ in response to medical treatment. We should also pay particular attention to M’s own reported decision that further medical care was all too late for her to consent to especially without a plan to deal with medical treatment failure. My late wife reached the same place and conclusion.

In asking for a medical treatment failure plan with regard to treating a particular symptom of their ME, M and my late wife, were explicitly asking for a more detailed discussion of the wider ‘risks’ involved for them as ME patients with regard to medical treatment. They were denied that discussion.

We should respect what these ME patients have told us and stop digging in the same medical hole which seems to have so little regard for discussing risk factors with regard to treating ME. We need to focus on a way forward that gives ME patients better care and treatment choices that take more account of all the difficulties they have in living with ME. This should include addressing the very real difficulties ME patients find in coping with suggested medical procedures and treatments for individual symptoms. We need good quality trials and research to get better information on this and so much more with regard to ME.

I look forward to seeing what comes out of the late September consideration as to whether any advice can be given by the Coroner on the future prevention of early deaths in ME. There is much that she could point to in my view, with respecting that the ME patient is their own best witness to what they need from the rest of us at any one time, being top of my list. Then it might be possible to get an answer to that need before it is too late.

 

Thank you @tuppence, an important perspective.

 

Trial By Error: Post-Inquest Comments from Sarah Boothby, Maeve’s Mum

https://virology.ws/2024/08/20/trial-by-error-post-inquest-comments-from-sarah-boothby-maeves-mum/

 

Video has now been removed.

The Chronic Collaboration tweeted
"Re. our interview with Dr William Weir, as people are asking: After a comment from Maeve's mother, Sarah, we decided to take the video down as per her request (see image) below. We don't want to cause anyone any distress, hence its removal. Sorry that people are disappointed."

 

Oh.
I did wonder if he was “getting all up in” Maeve’s case and it seems I was right.
Poor Sarah.

 

https://twitter.com/user/status/1826989584313438643



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