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

https://twitter.com/user/status/1839968288215830564

 

Full segment on BBC breakfast

https://www.youtube.com/watch?v=ZvCwLjD0tXg

 

I think anyone watching would be at a loss to understand how and why she died.

 

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.

 

the presenter added 'because of severe ME' .
so how is that natural causes?

 

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.

 

I think it just means that her death was not actively brought about by humans I don't know whether it includes cases where the natural cause could have been prevented.

 

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.

 

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.

 

The coverage in the print editions of the Times and the Guardian:

 

It wasn’t murder. It wasn’t an accident where a car ran you over. It wasn’t suicide.
A heart attack from the shock of seeing an accident is natural causes.

 

They do seem the most experienced specialists with the frailty levels of severe ME. Makes sense, although this is only in terms of palliative care, so for nursing practices, and not really the specialty itself.

 

If reps could just start with “its thought that….”

 

Just to say regarding the NHS learning module discussed above

We do have a thread on it here, i cant find it am too ocgitively useless today, but i'm am certain it exists

 

Or don't choose for a segment on ME a doctor who is new to the subject and has a pet theory

It feels as if ME was replaced by Long Covid

 

I'm surprised the coroner can leave it at that because it basically leaves us with a paradox: ME is not fatal, but Maeve died of natural causes, which by definition has to involve a naturally fatal condition. Starvation is obviously not in itself a natural cause. The legal profession usually does not allow paradoxes, they don't make sense in a profession where clarity needs to be absolute.

Here the natural cause is starvation. Brought about by ME. Which was preventable. Hence the prevention of future deaths things. It doesn't make sense to make this a case about preventing future deaths if this death couldn't be prevented. Which it was. Because ME is not directly fatal.

If history serves, this may be a near worst case scenario. It depends on the medical acknowledgement that ME is fatal. Which is firmly rejected on the medical side. The rest was effectively a whitewash of everyone responsible. Basically it seems to separate the medical from the legal here, with each having the version that satisfies everyone except the victim, her family, and the giant community of people suffering the same possible cruel fate of being ideologically starved to death and other instances of medical mistreatment.

 

How will Wessely's position on the NHS England Board be affected? Will he have to recuse himself during discussions on ME? Could he prevent discussions on ME?