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

Kitty said:
Absolutely. I guess what I'm driving at is avoiding confrontation.

Saying instead that there are constructive things you could do now, using your knowledge and experience. It would need a basic research framework, for you to talk to other doctors, for you to listen to and note what patients are saying. None of that's impossible, and it could save a young person's life.
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But it isn't impossible to retrain doctors not to gaslight and abuse ME patients.

Nor is it impossible to fund ME research properly. These are political choices based on prejudice.

And I don't see why we should avoid confrontation with an institution that views us with such contempt they would rather let us die of thirst and starvation than acknowledge that we are sick.

We can't appease the NHS. We have to fight to change the culture.
 
Kitty said:
Absolutely. I guess what I'm driving at is avoiding confrontation.

Saying instead that there are constructive things you could do now, using your knowledge and experience. It would need a basic research framework, for you to talk to other doctors, for you to listen to and note what patients are saying. None of that's impossible, and it could save a young person's life.
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with regards to any next steps - changes in NHS, Social care, research funding, even calls for a public inquiry, I’d hope the MEAssociation and AfME have these things in mind, have sought the appropriate legal advice, comms advice as to whether to raise them.

Of course we’re starting to think of these questions, but I’d hope that’s where the appropriate action comes from. I think it would be worth us asking them after the 9th if we don’t see fairly swift comments from them.
 
Nightsong said:
Some coverage in the Guardian ("GP who treated woman with severe ME tells inquest more funding is needed"):
https://www.theguardian.com/society...-me-inquest-more-funding-maeve-boothby-oneill

and in the Telegraph ("NHS staff treating woman with ME ‘didn’t understand condition’, says doctor"):
https://www.telegraph.co.uk/news/20...ating-woman-chronic-fatigue-didnt-understand/

and in the Times ("Doctors didn’t accept ME was a medical condition, inquest told"):
https://www.thetimes.com/uk/law/art...as-a-medical-condition-inquest-told-x028vsn5d
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Telegraph (no paywall)https://archive.ph/folpH

Times (no paywall) https://archive.is/5GWpz
 
Thanks @Haveyoutriedyoga and @Jonathan Edwards – I feel like I have a better rounded understanding of it now. And I agree, we desperately need reliable studies on this (and so many other things) before we can categorically say what is or isn’t helpful. I was taken from moderate to severe by a ‘treatment’ in the past and haven’t recovered since and I’m sure many others have experienced similar. It’s scary and unfair to have to experiment when your health is so precarious.

Given Maeve didn’t have the benefit of proper research into saline IV, I can’t help but think that the benefits of trying it outweighed the risks of starvation. It’s sad there are so many what ifs like this.

By the way, sorry I posted pretty much the same question as @Lou B Lou – I hadn’t quite caught up far enough at the time to notice I was asking the same thing!
 
Kitty said:
Maybe one effective strategy might to call for research for which a reasonable case can be made and which is do-able without a need to spend years fundraising and laying the groundwork.

One approach would be trialling different feeding methods, with whatever nursing resources are needed.

Another is whether judicious use of benzodiazepines could help people with very severe ME navigate necessary procedures like tube placement. Does it make it less intolerable, does it lead to better outcomes, does it add further complications? Might short term, lowest dose medication make the first week more tolerable until the gut begins to adapt?

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I agree, though it may be hard to extend the results to someone as severely ill as Maeve, but at least there would be some more research to draw from!

Your mention of benzodiazepines also puts me in mind of how Abilify allows Whitney Dafoe to tolerate more during the time he’s taking it – if I remember rightly, I think it helps him to get to hospital and back via gurney. That would also be extremely useful research and if we knew the benefits/risks now maybe it could even have been a consideration for Maeve.
 
RainbowCloud said:
Your mention of benzodiazepines also puts me in mind of how Abilify allows Whitney Dafoe to tolerate more during the time he’s taking it – if I remember rightly, I think it helps him to get to hospital and back via gurney. That would also be extremely useful research and if we knew the benefits/risks now maybe it could even have been a consideration for Maeve.
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Yes, I don't know much about the Abilify, but I've read about him using lorazepam to help tolerate some journeys or procedures.

It would be interesting to know whether this helps other patients get through, or actually reduces after-effects. As long as they have no respiratory issues, there might be a reasonable case for trialling it.
 
MrMagoo said:
I can’t articulate very well the sense I’m getting, but I’m feeling like we’re going to be disappointed if we’re expecting a full-on explosive decision.
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What is likely to occur, I think, is that the coroner will find that systemic failures led or contributed to the death. After she issues her report next Friday, she has tentatively scheduled a day for testimony from the medical director of the hospital, and that would be expected to lead to a report with recommendatons for changes on how to prevent this in future.

I think it's important to remember that neither of the parents is seeking retribution or punishment against any individuals involved or the hospital itself. They want systemic change. The staff generally did what they were trained to do and were expected to do per NHS policy/procedures. None of them were prepared or trained to handle this terrible situation. Stupid? Yes. But obviously no one wanted this outcome or intended for it to happen. I think it's wise to follow Sean's and Sarah's lead in what they hope to get out of this process.
 
dave30th said:
What is likely to occur, I think, is that the coroner will find that systemic failures led or contributed to the death. After she issues her report next Friday, she has tentatively scheduled a day for testimony from the medical director of the hospital, and that would be expected to lead to a report with recommendatons for changes on how to prevent this in future.

I think it's important to remember that neither of the parents is seeking retribution or punishment against any individuals involved or the hospital itself. They want systemic change. The staff generally did what they were trained to do and were expected to do per NHS policy/procedures. None of them were prepared or trained to handle this terrible situation. Stupid? Yes. But obviously no one wanted this outcome or intended for it to happen. I think it's wise to follow Sean's and Sarah's lead in what they hope to get out of this process.
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This, thank you.
The Coroner will likely conclude medics/DCC didn’t have appropriate training or knowledge. We know that gap exists thanks to BPS - the Coroner will recommend that gap is filled.

I think Sean has probably been very canny in referencing the BPS brigade and the disbelief of medics and others. The coroner likely wont have much to say on that- but Sean’s got it on the front page of national newspapers, that’s very powerful.
 
Haveyoutriedyoga said:
IF it helps for half an hour, providing symptomatic relief for half an hour (and I acknowledge that's an IF), then, is it possible that either the saline OR the assumed-to-b related half hour of relief causes some sort of consequential change, that then helps the person feel more well for the next few days (as subjectively reported and assumed to be a result of the saline, in some anecdotal cases)?
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According to "anecdotal cases" ie experiences shared for example in Swedish dysautonomia groups, there are some people who are currently getting IV saline twice a week for a number of weeks on a trial basis. They have reported that it helps them so much that they are even able to go to work part time, which includes travelling to a workplace outside the home. So for some people it's clearly about more than just "feeling better", and the effects seem to last for several days for them. They are obviously less severely affected than Maeve was, so not a comparison but it does suggest that the effect can at least sometimes be much more than "only minor and only very temporary".
 
MrMagoo said:
I think the hospital’s view is they did everything they were able to then she discharged herself against medical advice.
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Whereby "medical advice" was utterly failing to do good and actively doing considerable harm — to an extraordinary degree, ultimately fatal. Recognising their complete failure, she discharged herself with rational competence.
 
SNT Gatchaman said:
Whereby "medical advice" was utterly failing to do good and actively doing considerable harm — to an extraordinary degree, ultimately fatal. Recognising their complete failure, she discharged herself with rational competence.
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This is the thing, to some extent we’ll have to manage our expectations about the outcome as it will never go far enough for us. My “work brain” is flagging that to me, but my heart breaks, because I know exactly how this happened. We all do.
 
mango said:
According to "anecdotal cases" ie experiences shared for example in Swedish dysautonomia groups, there are some people who are currently getting IV saline twice a week for a number of weeks on a trial basis. They have reported that it helps them so much that they are even able to go to work part time, which includes travelling to a workplace outside the home. So for some people it's clearly about more than just "feeling better", and the effects seem to last for several days for them. They are obviously less severely affected than Maeve was, so not a comparison but it does suggest that the effect can at least sometimes be much more than "only minor and only very temporary".
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If we start from the theory that ME isn’t one thing, it’s a collection of illnesses which overlap or are similar, makes sense that some people find a treatment useful and others don’t.
 
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