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

rvallee said:
That graphic sums it well. ?
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A good depiction of the Elephant in the room. No amount of services/care plans will make things better if the Elephant is not first removed.

Jonathan Edwards said:
So far I get the impression that nobody is seeing the wood for the trees.

The absence of commissioning for severe ME/CFS is irrelevant, since Maeve was indeed admitted and treated. There were probably no side rooms during Covid, and probably still aren't, but that is a problem with the general lack of hospital resources.

The key thing for me is that Maeve was treated as a 'functional' case not to be fed because of 'overmedicalisation'. That needs to be grasped and deal with. The problem is that the blockage is not with the DoH, it is with physicians belonging to the RCP. They don't want to know.
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We fought and got access to a Hospice, a quiet room, considerate nursing, compassionate Doctors etc but it was eating difficulties and severe ME being treated as ‘functional’ that ruled the roost and did nothing to halt my late wife’s rapid progression to death or relieve her suffering in the final part of her journey.

I still live in hope, even after decades of them not wanting ‘to know’ and access to relevant medical and other services being denied/withheld, that the elephant in the room will eventually be banished.
 
Charles Shepherd comments on the coroner's decision to issue a Regulation 28 report:

https://meassociation.org.uk/ioci

Suggesting "a small number of specialist ME/CFS centres with dedicated hospital beds":
There also needs to be immediate action by the DHSC to make sure that all health professionals and trusts are following the very clear NICE guideline recommendations on the care and management of people with very severe ME/CFS.
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This requires the preparation of clinical pathways that co-ordinate community/domiciliary care with hospital care, especially when admission for nutritional support is required.

We also need to return to the situation where there are a small number of specialist ME/CFS centres with dedicated hospital beds for the assessment and management of people with very severe ME/CFS,
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MrMagoo said:
I’d really want to see charities/advocates leading on the “no bed, no pathways, no suitable treatment, no stats and we don’t even know how many pwME in the UK” type of thing in the media off the back of this.

The Times - NHS Bosses reject calls for specialist ME care
Non paywall https://archive.ph/vi8JA
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Plus, even though we don't know the physiology we know that, as people deteriorate they have less energy/battery and for some of thos ewho are very severe will not be able to chew/swallow/digest enough nutrition and hydration without some sort of physical feeding support, at least for a while.
 
Jonathan Edwards said:
So far I get the impression that nobody is seeing the wood for the trees.

The absence of commissioning for severe ME/CFS is irrelevant, since Maeve was indeed admitted and treated. There were probably no side rooms during Covid, and probably still aren't, but that is a problem with the general lack of hospital resources.

The key thing for me is that Maeve was treated as a 'functional' case not to be fed because of 'overmedicalisation'. That needs to be grasped and deal with. The problem is that the blockage is not with the DoH, it is with physicians belonging to the RCP. They don't want to know.
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Absolutely, there are physiological limitations, that cannot be remedied by raising her up 30 degrees a couple of times over the weekend (GET for a very severely affected person) or by "making her feel better if her hair is washed or she can suck on a bit of toothpaste.

Ideas based on normal physiology do not apply.

I know that to many HCPs this is counter intuitive, but the message must get through at ALL levels
 
Haveyoutriedyoga said:
How helpful would one or a few specialist centres be for severe/v severe if they required travelling to? How would that encourage progress in the rest of the system who need to learn to care for all of us in trusts and at home?
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Specialist centre staff could, through both care and research, develop a genuine understanding of what to do best and as part of their remit travel to advise on a domiciliary basis and also to give educational sessions to staff in relevant specialties. I think that means you also have to have local physicians with a commitment to seeing people with ME/CFS, even if only as a fraction of their work.
 
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https://x.com/timesoneill/status/1839716608001835110?s=46
https://twitter.com/user/status/1839716608001835110

https://twitter.com/user/status/1839716613790077391

https://twitter.com/user/status/1839716619028664776
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X/Tweets from Sean O’Neill:

“Maeve died from Severe ME three years ago next week (3 Oct 2021). The inquest into her death finally closed today. The coroner committed to a Prevention of Future Deaths report highlighting the risks from the national failure to provide specialist care for people with Severe ME.​

That report will be sent to @DHSCmedia ministers; to @NHSEngland bosses and be copied to the Medical Schools Council, the Medical Research Council and the National Institute for Health and Care Research. NICE must also take account.​

The coroner will address the need for specialist care for Severe ME; the woeful lack of research into this disease; the absence of medical education and training. The inquest exposed a systemic failure to provide a health service for hundreds of thousands of sufferers in the UK.​

This is an important moment. It does not guarantee change but it will provide a document with which ministers and medical leaders can be held to account - you can ask them what they have done, what will they do in response to it.​

RIP lovely girl”
​
 
Robert 1973 said:
X/Tweets from Sean O’Neill:

“Maeve died from Severe ME three years ago next week (3 Oct 2021). The inquest into her death finally closed today. The coroner committed to a Prevention of Future Deaths report highlighting the risks from the national failure to provide specialist care for people with Severe ME.​

That report will be sent to @DHSCmedia ministers; to @NHSEngland bosses and be copied to the Medical Schools Council, the Medical Research Council and the National Institute for Health and Care Research. NICE must also take account.​

The coroner will address the need for specialist care for Severe ME; the woeful lack of research into this disease; the absence of medical education and training. The inquest exposed a systemic failure to provide a health service for hundreds of thousands of sufferers in the UK.​

This is an important moment. It does not guarantee change but it will provide a document with which ministers and medical leaders can be held to account - you can ask them what they have done, what will they do in response to it.​

RIP lovely girl”
​
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Aww so sad. :broken_heart:
 
upload_2024-9-27_19-37-37.png

Image description: A photograph shared by Sean O’Neill of himself and his daughter Maeve as a young girl. Sean Sits at an unseen table in the foreground. He is wearing a white shirt and glasses. Maeve stands or maybe kneels and leans forward from behind him both hands hold onto his left shoulder where she holds her face just behind his. She is wearing a red short sleeve dress, she has tanned skin and long thick wavy locks of dark brown hair with slightly sun bleached highlights. The expression on her adorable face is hard to fathom. End of description.

I find it hard to look at this intimate family photo knowing that before she reached her 30th year she would be killed. That multiple adults in various professions would refuse her access to their services. That ultimately when she would attend hospital begging for help to drink and eat they would end her life by refusing her access to hydration and nutrition.

Maybe they didn’t believe her when she told them she couldn’t eat and drink without their help. Maybe they thought people like her didn’t deserve their help. Maybe they believed that having an ME diagnosis is a talisman that protects one from all serious illness, that protects from dehydration and starvation.

It is deeply disappointing that the coroner blamed ME and natural causes rather than denial of care and fatal delays in the provision of life saving procedures for this tragedy.

I am relieved to hear that the coroner concluded that an order
is necessary to request action from various bodies in order to prevent future deaths.
 
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Paul Keeble tweeted:
H. Guidelines at the time weren't helpful (2007). NHS guidelines makes no reference to inpatient treatment. No acute focus with CBT symptoms relief only.

Dr Keith Geraghty:
I am listing to the inquest on Maeve's death from ME - it is shocking to hear from Dr Hemsley that there are no national experts in ME/CFS to call upon in hospitals for patients with severe ME. I can only say the reason why, is because ME has been neglected & not taken seriously.
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rvallee said:
This is all a consequence of decades of maligning us, something that was an active and intentional choice made by physicians and enabled by the institutions that are responsible for this ongoing disaster.

This is all a load of ass-covering with no intention of changing anything until forced. We've heard the same lies for decades, and unless there is a legal mandate they are making it clear that nothing that they say is worth a damn. Kabuki theater with no honor.
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Look upon ye mighty works, O Psychosomatic Gurus, and its drearily predictable and appallingly cruel consequences for millions of sick, vulnerable, innocent patients.

This is entirely your doing. You are the original cause of this catastrophe, and the ongoing roadblock preventing the urgent root-and-branch systemic reform required to start the repair job.

The only path forward left now, particularly after your utterly disgraceful and cowardly behaviour post-NICE, is for you to all resign and retire. Effective immediately.

Which is the one thing you have made it crystal clear that you won't do.
MrMagoo said:
The Times - NHS Bosses reject calls for specialist ME care
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Does 'NHS Bosses' include NHS Commissioners?
MEMarge said:
Ideas based on normal physiology do not apply.

I know that to many HCPs this is counter intuitive, but the message must get through at ALL levels
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This.
 
Re: Dr David Strain
It was reiterated many times that he is not a “CFS” expert but a Physician with an interest in “CFS”.

Why then is he coordinating the E-Learning 3part course for NHS? I have seen a few comments on the first part saying PEM /PENE not mentioned. Is this the case?

Surely with his involvement with Action for ME which included a trip to various centres in the US he should be up to speed on the basics including PEM?
 
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