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

I have listened to the BBC 1 interview on iPlayer. Everyone should listen.
I think Sarah did brilliantly in conveying the confusion and absurdity of the situation.
Unfortunately, I think Binita Kane was seriously misleading. Her comments about oxygen lack are entirely unfounded and I think they compound a problem I already see in the Coroner's report.

The key error I see in the coroner's report is in point 5*. It might seem OK but the coroner clearly thought that 'ME' is some progressive 'disease' that will kill people whether or not they are fed. We know from Whitney Dafoe's case that this is simply not so. On a wider basis there are, as far as I know, no known cases, in which someone has died with ME/CFS from either metabolic failure or neurological failure. They die of starvation. Despite brain fog, patients like Maeve and Whitney remain fully rational and able to produce intelligent thoughts. Metabolic blood tests remain completely normal (unless of course the person is in a state of starvation).

The disaster is the point 5 justifies point 6*, which is factually wrong. She died because she was not fed, as Sarah says. Binita Kane's arguments are counterproductive here. They prop up a myth from people like Dr Weir that we are dealing with a progressively fatal disease.

The truth is we know absolutely nothing about a 'disease' underlying each individual's situation. We do not even know if all people with ME/CFS have the same problem. As I have tried to emphasise in my Qeios piece, it is time to handle this entirely on the practical evidence, not on theories about oxygen or psychology.

*
5.ME is a disease with no cure
6.Maeve's death not attributed to health care provider neglect
 
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The other thing that I think is a serious mistake (as I keep saying) is to go back to referring to 'ME' which is confused in people's minds with the supposed neurological disease at the Royal Free. We are not talking about that at all. ME/CFS includes impairment of neurological function but it is not in any useful sense a 'neurological disease'.
 
Jonathan Edwards said:
I have listened to the BBC 1 interview on iPlayer. Everyone should listen.
I think Sarah did brilliantly in conveying the confusion and absurdity of the situation.
Unfortunately, I think Binita Kane was seriously misleading. Her comments about oxygen lack are entirely unfounded and I think they compound a problem I already see in the Coroner's report.

The key error I see in the coroner's report is in point 5. It might seem OK but the coroner clearly thought that 'ME' is some progressive 'disease' that will kill people whether or not they are fed. We know from Whitney Dafoe's case that this is simply not so. On a wider basis there are, as far as I know, no known cases, in which someone has died with ME/CFS from either metabolic failure or neurological failure. They die of starvation. Despite brain fog, patients like Maeve and Whitney remain fully rational and able to produce intelligent thoughts. Metabolic blood tests remain completely normal.

The disaster is the point 5 justifies point 6, which is factually wrong. She died because she was not fed, as Sarah says. Binita Kane's arguments are counterproductive here. They prop up a myth from people like Dr Weir that we are dealing with a progressively fatal disease.

The truth is we know absolutely nothing about a 'disease' underlying each individuals situation. We do not even know if all people with ME/CFS have the same problem. As I have tried to emphasise in my Qeios piece, it is time to handle this entirely on the practical evidence, not on theories about oxygen or psychology.
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How do we get people to understand this key point, when so many of even those that we see as positive advocates for ME/CFS don’t get this?

How do we progress when, not only our ‘enemies’, the BPS crew such as White and Wesley, but also pro biomedical illness advocates, our ‘friends’, persist in going beyond the evidence in pushing potentially harmful treatments.
 
Amw66 said:
The reference to e-learning involving BACME, WESSELY, AFME/Dr Strain, suggests more of the same for #PWME
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For one shocking moment I read that as Wessely being directly involved in the e-learning, but the screenshots don't suggest that, it's just(!) that he's on the Board of NHS England.

Yes, re David Strain - I hope he brings in lots of support for that development work. He might find it helpful to look at some of the comments that have been made here about other e-learning modules .
 
Peter Trewhitt said:
How do we get people to understand this key point, when so many of even those that we see as positive advocates for ME/CFS don’t get this point? How do we progress when, not only our ‘enemies’, the BPS crew such as White and Wesley, but also pro biomedical illness advocates, our ‘friends’ persist in going beyond the evidence in pushing potentially harmful treatments.
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I don't know. I have done my best to communicate it to the charities and physicians involved and to the wider medical world through my Qeios piece. I did think of writing a viewpoint article for BMJ but I am not overoptimistic it would be worth the effort and get printed. I am thinking about doing a Division of Medicine Grand Round presentation at UCL on the inquest but I don't know when that would be. I was thinking of trying to talk to Sonya personally but have not get around to that either. I have also, over the last ten years, been wary of being proactive rather than responsive, in order to avoid being labelled as a pre-ME activist, black balled from any respectable committee.
 
Jonathan Edwards said:
ME/CFS includes impairment of neurological function but it is not in any useful sense a 'neurological disease'.
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This may prove correct. It may also play out that it is precisely a neurological disease (or cluster of diseases that present similarly).

Diagnostics aside, it sure has the feel of the latter.

Characterizing ME/CFS as progressive is another matter. It seems to be up to a point, at least for most. It's almost parasitic in that it debilitates but doesn't usually kill. There is a weak argument to categorize it as relapsing remitting - albeit in a slowly descending grand fluctuation of symptoms sort of way, punctuated by daily micro fluctuations.

Jonathan Edwards said:
I was thinking of trying to talk to Sonya personally but have not get around to that either. I have also, over the last ten years, been wary of being proactive rather than responsive, in order to avoid being labelled as a pre-ME activist, black balled from any respectable committee.
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We are the wrong sort, aren't we?
 
duncan said:
This may prove correct. It may also play out that it is precisely a neurological disease (or cluster of diseases that present similarly).

Diagnostics aside, it sure has the feel of the latter.

Characterizing ME/CFS as progressive is another matter. It seems to be up to a point, at least for most. It's almost parasitic in that it debilitates but doesn't usually kill. There is a weak argument to categorize it as relapsing remitting - albeit in a slowly descending grand fluctuation of symptoms sort of way, punctuated by daily micro fluctuations.


We are the wrong sort, aren't we?
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Is it bonkers to say that what I’ve seen of what seems like a move by neurology to thinking the brain works not as part of a system with the body but like some top-down master system that only ‘tells everything else what to do’ is part of the issue in neurology being likely to be one of the least helpful specialisms to get to the bottom of this. Sure

Sure, areas that sit in brain or nervous system may well be involved or part of it - but they don’t seem capable of looking at anything from a body as a system point of view. And as for using the software-hardware nonsense where in their mind if it’s not barn door for one of the few big bits they know what to do with then the only other place they look is to psycho-therapy because’thinking wrong’ vs anything unusual about blood or cells or anything else in another part of the body ‘could only be due to the mind’ well….


On the progressive point I’m being that annoying person that says everyone is right because the devil might be in the detail. The more hostile environment does make things progressive because if someone is put in a world where they can’t escape being forced over threshold that’s what it does. That that has been caused more due to advice/incitement suggesting people should be pushed and the scientific tenet of observe action—> consequence ignored due to ideological guidelines that then re arranged all sorts of norms to limit ability for the null to ever be proven or consequences seen have probably caused an increase in disability and numbers getting past the point /ending up with such a low threshold that people say the adjustments are impossible even if there were intention to offer them.

So yes that point of how consequential these old approaches to even people they think are less unwell because mild means the crashes aren’t constant (so they don’t see them) have been to more ending up very severe is one point that needs to be reinforced.

so sad really. It the classic do the wrong thing insisting people are talking nonsense then when the consequences hit from that instead of taking it as learning they just wash hands saying ‘now it’s too much’ rather than taking responsibility that poor approach contributed. And that a good approach could also contribute to much less disability - and for some of these things it’s money-saving by stopping paying for a gravy train focused only only undermining the testimony and safety and adjustment requests of those less ill or in the early days.

we are all forced to be too polite (that coercion again) to be allowed any voice but in doing so we end up losing bejng able to state some of these things in the pretty simple terms they exist in.

Instead of maybe 2 days to fit a feeding tube seriously ill people are being subjected to many months on occasion of being trapped in inappropriate hospital environments for reasons so poorly ‘explained’ because the reasoning behind it is so poor. Now even fixing that they claim can’t be done due to money when that’s ridiculous that reducing the number of staff people are passed round and slashing the time they are forced to be in a hospital bed clearly saves money. Nevermind their legal costs for all the lawyers to tell them what to say about their ‘beliefs’ at an inquest

It feels logically that someone clearly prefers things this way - even bad organisations would fix this sitter if it was a no-win rather than just patient always loses?
 
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Binita’s explanation I find useful as an interim, easy to use description for my family so I’ve sent them the clip. She speaks in a language they will grasp- I hope!

I spend so much of my time living with the sense my family and friends think I am not trying despite desperately making every effort to do basic stuff.

If this explanation alleviates this sense of suspicion that I feel judged by all who know me, then it’s good enough for me.

Im not saying I’m comfortable with focusing ME pathology on microclots. I worry if research ends up being directed by opinion and not science.
 
I don’t think it’s great that Binita Kane stridently explained that ME pathology is oxygen to tissue problem as if it was fact.

Apart from that, it was brilliant. Covered the 1970s shift to Psychiatry well, the gaps due to no training/send them to Psychiatry
 
Hopefully the interview will impact on medical people, although I think it may pass by as a popular news item of no great significance.

When I visited my department this week I noted again that my colleagues had not even heard of the clot theory, despite encountering people with ME/CFS and Long Covid. If any of them had heard this they would ask what on earth Kane was talking about. I doubt any of them would have taken her seriously.

It seems extraordinarily difficult to get a sensible message across in a way that might impact care. The 'functional' model remains firmly imprinted in most physicians' minds.
 
Page 13 of hard copy of the Times. 2/3 page article on Maeve's Inquest.

Heading " Coroner's landmark ruling on ME". Large photo of Sean with Maeve aged about 7. Smaller photo of Dr Helmsley who said " there were still no plans for a specialist unit to help ME patients" and photo of Wes Streeting who" now faces pressure to act."

The article is powerfully written by Fiona Hamilton and references Sean working for the Times.
 
Just to spell it out for anyone reading this who isn’t aware, promoting biomedical theories and treatments which are not supported by evidence is problemic because:

1) False biomedical theories and treatments can be just as harmful as BPS theories and treatments.

2) When ME/CFS advocates present unevidenced theories as facts, we lose credibility with doctors and medical authorities.

3) If/when those unevidence theories are shown to be false, we lose even more credibility.

4) If advocates are saying that we know a lot about ME/CFS, when the truth is we know very little, it sends out completely the wrong message.

It would be fantastic if we knew that ME/CFS was caused by a severe problem with oxygen supply to tissues which causes problems with production of energy in cells but we don’t.

I’m sorry to be negative. I’m very grateful to people who are trying to advocate for us in good faith. But we must learn from past mistakes and ensure that we stick to the facts. We know very little about ME/CFS and we desperately need to change that.
 
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Sly Saint said:
the presenter added 'because of severe ME' .
so how is that natural causes?
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Lawyers will be able to be more informative, but I suspect that the coroner has a limited number of choices, as well as requiring a high evidence bar for anything other than natural causes.

On the available evidence, we may suspect that had she been given alternative feeding in at timely fashion she would not have died, however we can not prove that. Also given the attending doctors said what they did, and lacking any clear proof they gave false evidence, it is probable the coroner had no choice.

I would have liked her to leave it as an open question whether earlier alternative feeding might have prevented her death, but I don’t know if that was an available option for her.
 
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