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

I thought you were from San Francisco, not North Dakota.

 

Really odd that the report does not at least include something, anything, about the fact that the updated guideline was explicitly rejected by the professional associations and the health care system subsequently refused to implement it. They can promise all they want about something to be delivered in some potential future, they had 3.5+ years and they failed to do anything at all.

You'd think this would be somewhat relevant. It's not excuse to say that the guideline isn't comprehensive about this particular situation, that's the exact same problem: a bunch of professional saboteurs weakened the guideline, then the weakened guideline was not even implemented in large part because it's actually factual for once, and they want the fantasy version that allows them to neglect people to death.

This isn't some incidental thing. It's central to it all. There were freaking public tantrums and everything. And it's as if it didn't even happen. This nightmare continues largely because most of the basic facts are systematically brushed off, even when they especially matter. It's maddening how it all operates like we're still in pre-modern times and basic facts are intensely controversial and political. This is the opposite of how professionals are supposed to behave.

 

Don't diss the Dakotas! Some hip people live there!

 

I think you might have made one with the coffee at court!

 

No, that was a faux pas. Quite different.

 

It’s not ‘cock-up’.

If this situation was accidental then at least some of the time like flipping a coin, things would go our way. Without people with ME having to literally kill themselves through fighting for better treatment or at least less mistreatment, and still getting nowhere fast.

Material interests of those already in power dictate the dominant ideology. Everyone is affected by the dominant ideology.

So though some people do actively conspire, it doesn’t need to be most people to involve themselves with that, just to support the establishment way over challenges to this.

 

I agree that the doctors knew how to keep Maeve alive. What I don’t know is whether all the ME/CFS deaths have been preventable or not.

Emily Collingridge died in hospital. Mepedia says that the “inquest into her death recorded a narrative verdict, stating the cause of death as ‘respiratory arrest in an individual with clinically diagnosed ME due to the possible side effects of prescription drugs and aspiration of gastric contents.’” I don’t know all the details but it seemed as though her ME/CFS May have been progressive and I’m not clear whether her death was preventable or not.

I don’t know if there was an inquest into Kara Jane Spencer’s death. From memory, it appeared to be known that she was in danger of dying for some time before her death but I don’t know the cause or whether it was preventable.

 

Thanks John and Lucibee.

This version contains No 4, which was absent from Dave T's and other online versions:

"4 CIRCUMSTANCES OF THE DEATH

Maeve Boothby was 27 at the time of her death. She was diagnosed with ME at Frenchay hospital in 2011 and in 2019 it became so severe that she was bedbound for 21 hours per day.
Concerns about her rapid physical deterioration escalated and during 2021 she had three admissions to the RDE on 18th March , 19th May – 3rd June and finally on 25th June – 17th August. These admissions were unsuccessful in preventing Maeve from suffering from malnutrition which was a consequence of her ME for which there is no known cure. Maeve sadly died at home on 3rd October 2021."

 

As things stand we have no evidence of any case of ME/CFS being progressive in the sense of actually causing death directly or of a mechanism for that. I think it is much more likely that all the deaths are due to people getting weak because of poor nutrition with complications such as aspiration of gastric contents being common ways that can end.

If ME/CFS caused death directly through a metabolic or muscle weakness mechanism we would have had that well documented decades ago. It is not a rare illness and even if only one person in a hundred had a truly progressive form of that sort we would be seeing tens of deaths according to a pattern each year in the UK alone.

I worry when people talk about deaths being attributable to ME/CFS per se. I don't think we have evidence of it being a direct cause. I think it is easy to give the wrong impression about the illness. The coroner seems to have accepted that Maeve was likely to die of her ME/CFS anyway and I am not sure she understood what was really going on.

 

Not really. It was a consequence of her difficulties in eating not being properly attended to. If someone dies of dehydration on an intensive care ward where they are recovering from meningitis we do not say that the dehydration was a result of the meningitis. It was a result of not giving adequate fluids.

 

Agree preventable.

But why are people getting poor nutrition if not nausea alone, then because of weakness of swallow or chew or stomach muscles?

Or weakness of ability to sit muscles preventing eating. So would that not be ME (or other illnesses undiagnosed) making muscles not function?

 

I don't think it need be a problem with the muscles themselves. In myasthenia it is a problem with nerve-muscle junctions. In MS it is a problem with spinal cord nerve cells. In supra nuclear palsy it is a problem with cells higher up in the brain.

But more importantly, there are lots of common situations when we cannot do things when all these are normal. Pain can completely stop muscle function in a way that you cannot overcome by willpower. I have had a strange episode when I could not drink water not because of nausea but some other central nervous block, that got better later in the day. With vertigo you cannot stand up because of a central problem. In narcolepsy you cannot use any muscles because your brain turns itself off and you fall asleep. The possibilities are many. The one thing that is very unlikely I think is that muscles are actually weak or lacking in energy supply.

We need to stop thinking about me/CFS in terms of the sort of physiology we get taught at school. I think it will turn out to be something much more subtle. Until people discovered that the curare used on poison arrows mimicked myasthenia gravis nobody had any idea why people were paralysed. Nothing wrong with the muscle itself.
Yes, ME/CFS presents as weakness but it is of a sort that occurs with subtle mechanisms. The respiratory muscles are not affected for instance.

 

I phrased that informally/badly, I was thinking of weak muscles in the colloquial, my muscles feel weak sense. But I wasn’t thinking about the muscles themselves really.

A fortunate lapse. Because I am interested in hearing about ways that muscles can stop working thank you.

I guess you meant really truly weak muscles because of malnutrition meaning the muscles can’t repair themselves and then stop function as they should?

But I was wondering, if the muscles can stop working well for whatever reason, to the point that you can’t eat could the also not end up occasionally falling such that you can’t stay alive. How do we know not being able to move or eat is as bad as it can get with ME, could you not die, may your immune system fails making certain chemicals or whatever or your breathing muscles stop functioning or your heart muscle?

Then would ME be potentially fatal?

 

Heart and respiratory muscles are unsurprisingly resistant to most subtle causes of 'weakness' People with myasthenia can die of respiratory muscle failure but they have a defect that we know affects all striated muscle/nerve junctions. Nobody with ME/CFS has ever been recorded as having significant weakness of respiratory or heart muscle function of a sort that might be fatal as far as I know. With maybe a million people with ME/CFS in the USA at any one time if it could kill people that way we would know by now.

Moreover, it is unlikely that swallowing and pharynx muscles are stopped from functioning in ME/CFS. People with diseases that block these muscles from working choke. And stomach muscles are something completely different - smooth muscle that by and large controls its own action. Despite talk of gastroparesis I am not sure we have any evidence for gut muscles not acting in ME/CFS.

I worry that people have been given very misleading ideas about all this. ME/CFS is not a 'multi system disease' in the sense that we know there is pathology in lots of organs. All the organs are normal. Which is why it is such a puzzle.

 

Okay that’s what I thought. It would be too few people dying for it to be related to ME specifically and directly, rather than mistreatment or non treatment of complications like not being able to eat or drink.

I’ve not generally referred ME as a multi system disease. Because I think it’s a one maybe two system disease. But I had thought that the term ‘multi system’ had another meaning too, that of many body systems and functions being affected. I had absolutely assumed that this was an acceptable use of the term. I guess since it was all over the ME literature from so many different sources. So to be clear, is it not?

Is it mainly the ‘disease’ part that’s the problem because we don’t have pathology. If it was multiple system dysfunction would that be work technically?

If it isn’t, and really only has the specific medical meaning of life organ damage, then I can see why this might be one more contributing factor in doctors not taking us seriously.

 

No they can both mean the same thing, to make a mistake. I’d argue faux pas would be more relevant to the doctors in fact, because it’s them being significantly and embarrassingly wrong, whereas cock-up is used more in jest.

 

That’s nice. How does the coroner explain Whitney Dafoe being alive and able to write to her, I wonder?

 

The consultants gave that sort of line didn’t they? The Gastroconsult guy (I felt he was obnoxious) and Dr Strain, am sure I recall them talking of terms of her death being inevitable within x number of months.