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

Haveyoutriedyoga said:
now everybody has to do a shot.


I agree, it’s one thing hearing that there is nothing they can do to treat the MECFS, but another level of horrible hearing they can’t make minor accommodations to avoid making it worse.
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And another level again when there is a side issue (with me it’s often my voice or my reverse sleeping) which has to be explored and explained, and feeds into the “suspicion” that you’re “just lazy/depressed” and then your session is spent discussing that, when in fact you’ve got a broken finger and you just asked for an afternoon appointment.

(When I explained I wouldn’t be able to wake and come in at 9am, and asked for some reasonable adjustment “the doctor says sleep deprivation isn’t a disability so there’s no duty for a reasonable adjustment, you need to get up and here at 9 and wait like everyone else”)
 
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MrMagoo said:
And another level again when there is a side issue (with me it’s often my voice or my reverse sleeping) which has to be explored and explained, and feeds into the “suspicion” that you’re “just lazy/depressed” and then your session is spent discussing that, when in fact you’ve got a broken finger and you just asked for an afternoon appointment.
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Actually doctor it’s one issue one appointment so I’ll telephone another day to arrange that!
 
Haveyoutriedyoga said:
Actually doctor it’s one issue one appointment so I’ll telephone another day to arrange that!
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It’s not when the Dr decides there’s an Urgent Medical Issue they need to explore. See also “well this appointment has overrun so I’ll have to go” ok thanks, so you’ve wasted my time because I’ve had to bring you up to speed on something which isn’t currently an issue, and now it’s somehow my fault I’m not getting the appointment I needed.
If only the GP could access my medical history somehow. To see what the ENT has said or the ME/CFS clinic has said.
 
MrMagoo said:
And another level again when there is a side issue (with me it’s often my voice or my reverse sleeping) which has to be explored and explained, and feeds into the “suspicion” that you’re “just lazy/depressed” and then your session is spent discussing that, when in fact you’ve got a broken finger and you just asked for an afternoon appointment.

(When I explained I wouldn’t be able to wake and come in at 9am, and asked for some reasonable adjustment “the doctor says sleep deprivation isn’t a disability so there’s no duty for a reasonable adjustment, you need to get up and here at 9 and wait like everyone else”)
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That's dreadful and wrong!
 
MrMagoo said:
It’s not when the Dr decides there’s an Urgent Medical Issue they need to explore. See also “well this appointment has overrun so I’ll have to go” ok thanks, so you’ve wasted my time because I’ve had to bring you up to speed on something which isn’t currently an issue, and now it’s somehow my fault I’m not getting the appointment I needed.
If only the GP could access my medical history somehow. To see what the ENT has said or the ME/CFS clinic has said.
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How vile, and exhausting.
 
Haveyoutriedyoga said:
How vile, and exhausting.
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This is the point. It’s exhausting.
ME/CFS causes reverse sleeping and sleep problems, basic fact which few medical professional knows or accepts as a status quo.
I know Maeve faced this in hospital, I read it somewhere “maybe if you weren’t up all night then asleep all day…” like it’s a choice. Like it’s a failing.
 
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bobbler said:
Yes basically dying under a different label where it gets called suicide or even death by a different label (if they call it an earring disorder) but really it’s more complex than that and calling it that.

I remember watching I think it was the end of the first episode of the Miriam margolyes being an Australian programme. It had a historical event to do with aboriginal and Torres straight people being on pasture land by coast just going about their lives (can’t remember but chilling basically, not a riot) and an army coming and driving them off the cliff to their deaths. Then that cliff being named ‘suicide point’
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I think this is an area where we somehow need to work out how to get the stats and surveillance on it so we know the real numbers of pwme who get killed via a route that manages to relabel them so they get no peace or justice in death either


This is the most egregious part of the brutal hostile environment deliberately built fir pwme

and probably because it’s hard for those people to communicate and even be believed by the community once they have that labelling and capture they are disappeared into hell and not counted even in the numbers

I also note those who’ve been through adolescent services are made to feel threatened (with removal and worse treatment I suspect) fir speaking out and how many end up so destroyed they then turn up having had to have full time carers in a hospital and are then treated by those new staff as if ‘people don’t get this ill’ whilst prior treaters whistle as if their bs treatment like sleep hygiene isn’t responsible

it’s that continual refusal to accept responsibility leaving even patients who give it a go just abandoned to worse bullying from the next person when the last person has no integrity to say it was their treatment that left them there so not to put them through that same bullying sgain.

and yet I think the ones we hear about are the tip of the iceberg - because of these threats and because unless you’ve someone close to you who will go against the grain every single person these people meet are in deluded land so once you lose your voice, which will be early because it’s constructed so you never get a break from the environment to be out of PEM at any point , well then you’ve been disappeared snd no one is stopping those now in charge of you from saying what they want about you

and no one you could contact believes because of your voice and because the story is so endless you have to tell
 
tornandfrayed said:
Too stupid at the moment to post the link, but there is an absolutely beautiful piece on #ThereforME by Maeve's best friend.
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The preventable death of Maeve Boothby O’Neill
A lament for Maeve from a friend who loved her

KAREN HARGRAVE
OCT 15, 2024

Today’s post is from Bethan Knight. Bethan lost her best friend Maeve Boothby-O’Neill to ME in 2021, a death that shouldn’t have happened. Maeve was an exemplary human being who changed Bethan’s life. Bethan is a writer and essayist, aiming to be a better disability ally, and honouring Maeve’s memory in grief.

Warning: this post contains upsetting content, including the death of someone with Very Severe ME. It’s OK to sit this one out if it feels too close to home.
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more at link

https://www.thereforme.uk/p/the-preventable-death-of-maeve-boothby
 
Thanks for posting that Times article and the nonpaywalled link.

Sean O'Neill said:
A third statement arrives from Dr Anthony Hemsley, medical director of the Royal Devon and Exeter Hospital. He is pushing for change and has reformed the way things are done at his hospital because of “this very sad case”.

He writes, “It remains the case that the Trust is not commissioned, whether by NHS England or the regional ICB (NHS Devon integrated care board), to provide a specialist chronic fatigue syndrome (CFS)/ME service for patients with severe/very severe ME. As such, there is no named individual within the CFS/ME service who is assigned the role of managing/co-ordinating the care of patients with severe or very severe ME. This, as far as I am aware, is the position nationally across the country.”
[...]
Hemsley gives evidence and is impressive. He has instigated changes locally which should improve care — they have seven patients on their books, all being treated at home with wraparound community care and bespoke plans if admission to hospital is required.
He has pushed at regional and national level for the development of a specialist service for severe ME patients, but has clearly been thwarted. His own trust is in financial dire straits and he believes that this is something that demands a national response.
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Do we now think that that might be the safest hospital for severe PwME to be treated? On the grounds that they're the ones now trying hardest?
 
Sasha said:
Do we now think that that might be the safest hospital for severe PwME to be treated? On the grounds that they're the ones now trying hardest?
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As far as I know Hemsley has not provided anyone else with information about what he doing, or what the financial arrangements are. If other trusts cannot refer then it is not much help. It sounds as if at least the Hospital has some idea of what people with ME/CFS are, and might need, but I don't know more. Sonya didn't seem to have any information.
 
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