hinterland
Senior Member (Voting Rights)
Surprisingly good articles from The Guardian, perhaps they’re trying to redeem themselves after that awful one by Dr Miller.
Maeve Boothby O'Neill - articles about her life, death and inquest
- Thread starter dave30th
- Start date
Ash
Senior Member (Voting Rights)
Yes that consoles me. And the fact that if the hospital didn’t fail (they did but) then the whole system must be unfit for purpose.
Dolphin
Senior Member (Voting Rights)
(Also shared to the Sussex & Kent ME/CFS Society thread: https://www.s4me.info/threads/united-kingdom-sussex-kent-me-cfs-society-news.1906/page-9#post-547776 )
For what it is worth:
Source: Sussex & Kent ME/CFS Society
Date: August 9, 2024
[Press release]
Very Severely affected ME Patients ----------------------------------
Severe ME Awareness time this year coincides with a British coroner's report (9/8) on the death of a 27 year old woman while suffering from Myalgic encephalomyelitis(ME) also known as Chronic fatigue syndrome(CFS).
Around 20% of those affected by the often life changing illness are severely affected being housebound with a few being bedbound and reliant on others for care. While it is unusual for people to die with the illness it is not unknown and this has occurred a couple of times in Sussex over the years.
Those who are mildly or moderately affected are well served by an experienced specialist multidisciplinary team based in Haywards Heath that receives around 40 new referrals per month. The service is not however commissioned to accept severely affected patients.
The Sussex & Kent ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.
Those very severely affected were often referred to a specialist centre in Romford but that closed some time ago leaving nowhere for very seriously ill patients to be sent to.
Professor Leslie Findley who was the lead consultant at the Romford Centre says: 'Nothing new has come out of this case, and a coroners statement may alter the attitudes of the powers that be, but will not alter medical and scientific understanding. The whole issue of severe, and in particular, very severe CFS/ME was discussed in the 1990s. Indeed, the last labour government launched an ME initiative from the one NHS unit that was set up to manage those with severe and very severe CFS/ME. This unit did this successfully, but unfortunately funding was not continued. We were unable to get support from local health services, central government and in particular, from the charity sector. Nobody was interested. It is a myth to say that severe and very severe cannot be managed to the advantage of the sufferer, but it does require designated beds in specialist units with appropriate medical and therapeutic teams. Until this happens, the case we have before us is going to be repeated ad infinitum. The knowledge does exist how to manage these unfortunate people with very severe ME, but it cannot be done from general practice or general medical wards.'
Professor Leslie J Findley Previously Director National Centre for Fatigue Syndromes Essex Neurosciences Unit
The Sussex ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.
Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'.
For what it is worth:
Source: Sussex & Kent ME/CFS Society
Date: August 9, 2024
[Press release]
Very Severely affected ME Patients ----------------------------------
Severe ME Awareness time this year coincides with a British coroner's report (9/8) on the death of a 27 year old woman while suffering from Myalgic encephalomyelitis(ME) also known as Chronic fatigue syndrome(CFS).
Around 20% of those affected by the often life changing illness are severely affected being housebound with a few being bedbound and reliant on others for care. While it is unusual for people to die with the illness it is not unknown and this has occurred a couple of times in Sussex over the years.
Those who are mildly or moderately affected are well served by an experienced specialist multidisciplinary team based in Haywards Heath that receives around 40 new referrals per month. The service is not however commissioned to accept severely affected patients.
The Sussex & Kent ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.
Those very severely affected were often referred to a specialist centre in Romford but that closed some time ago leaving nowhere for very seriously ill patients to be sent to.
Professor Leslie Findley who was the lead consultant at the Romford Centre says: 'Nothing new has come out of this case, and a coroners statement may alter the attitudes of the powers that be, but will not alter medical and scientific understanding. The whole issue of severe, and in particular, very severe CFS/ME was discussed in the 1990s. Indeed, the last labour government launched an ME initiative from the one NHS unit that was set up to manage those with severe and very severe CFS/ME. This unit did this successfully, but unfortunately funding was not continued. We were unable to get support from local health services, central government and in particular, from the charity sector. Nobody was interested. It is a myth to say that severe and very severe cannot be managed to the advantage of the sufferer, but it does require designated beds in specialist units with appropriate medical and therapeutic teams. Until this happens, the case we have before us is going to be repeated ad infinitum. The knowledge does exist how to manage these unfortunate people with very severe ME, but it cannot be done from general practice or general medical wards.'
Professor Leslie J Findley Previously Director National Centre for Fatigue Syndromes Essex Neurosciences Unit
The Sussex ME/CFS Society is calling for NHS specialist services for those who are severely and very severely affected across the county.
Colin Barton of the ME/CFS Society says: 'It would seem that those most in need are the most overlooked in Sussex and this cannot be right'.
Ash
Senior Member (Voting Rights)
Jonathan Edwards
Senior Member (Voting Rights)
I also think that the inquest may have achieved the one thing it could achieve, which is to bring a case example out into the open in a way that allows everyone to analyse exactly what the critical blocks are. I don't think anyone on the medical side comes out of this very well, except the individual GP. But the GP set up certainly does not. A GP should not be in charge of a long term illness the way they are now expected to be. The RCGP gets no points.
The specific thing that I have learnt is that the gastroenterologists are actively discouraging feeding support for what they term 'functional' cases. Weirdly, they think these functional cases are associated with structural diseases like EDS. They have no idea what they think, in fact. I intend to call this out in a revision of my Qeios article. It may not be very comfortable reading for anyone, but it needs to be said. It would be good if there was some dialogue with these people, but that is up to them.
rvallee
Senior Member (Voting Rights)
So this is a very odd conclusion. The facts speak of a serious disease, which the doctors misinterpreted as psychological, but is serious enough to cause inevitable death. They kept saying it was inevitable, impossible to prevent. Based on nothing at all. Which means that all the others with severe ME face an explicit risk of death, right now. Which is true. But they can simply lie on the stand about what they think, in a very coached way, and it's all good. No one to blame.
And even though the facts speak of an illness so terrible that it can cause inevitable death... we know it will continue to be treated as psychological. Basically this guarantees that not only will it happen again, it will probably happen more, but likely at home rather than hospitals, since it sends the clear message to people with severe ME to never go to a hospital. I'm not in the UK but I have long adopted the same: I'm only ever going to a hospital feet first as long as I am ill with ME.
In the end systems protect themselves. Even when their primary mission is to protect vulnerable people. Even when they fail miserably at this mission. Power rules everything, and they have it all. Makes a completely mockery of duties of care and candor, but no one believes in them anyway. They're just fluffy words.
Ideological beliefs caused Maeve's death and that of many others, in the past and future. And that ideology has been reaffirmed as standard operating procedure, everyone involved will be protected and defended. I didn't expect any different, but it's still shocking how much blatant disregard for human life it all takes to whitewash this. And no doubt the medical forums will be very gleeful about it, and pick and choose the details they want, knowing that this whitewash happened because they believe that it's psychological, even though the coroner has accepted that lying about it on the stand is OK. Lies like this can't be disproven anyway, so in the end it's down to a moral imperative, and they don't apply to us.
And even though the facts speak of an illness so terrible that it can cause inevitable death... we know it will continue to be treated as psychological. Basically this guarantees that not only will it happen again, it will probably happen more, but likely at home rather than hospitals, since it sends the clear message to people with severe ME to never go to a hospital. I'm not in the UK but I have long adopted the same: I'm only ever going to a hospital feet first as long as I am ill with ME.
In the end systems protect themselves. Even when their primary mission is to protect vulnerable people. Even when they fail miserably at this mission. Power rules everything, and they have it all. Makes a completely mockery of duties of care and candor, but no one believes in them anyway. They're just fluffy words.
Ideological beliefs caused Maeve's death and that of many others, in the past and future. And that ideology has been reaffirmed as standard operating procedure, everyone involved will be protected and defended. I didn't expect any different, but it's still shocking how much blatant disregard for human life it all takes to whitewash this. And no doubt the medical forums will be very gleeful about it, and pick and choose the details they want, knowing that this whitewash happened because they believe that it's psychological, even though the coroner has accepted that lying about it on the stand is OK. Lies like this can't be disproven anyway, so in the end it's down to a moral imperative, and they don't apply to us.
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D
Deleted member 2545
Guest
Yes I thought that. The explainer one with the whistleblower Clinician commentary about the policy maker generation - linked again below for convenience - is really quite a powerful point. Qudos to anyone who's complained and AfME for a strong quote too.
https://www.theguardian.com/society...s-me-myalgic-encephalomyelitis-nhs-criticised
MrMagoo
Senior Member (Voting Rights)
I know this isn’t what you mean, but an unnatural cause would be being murdered.
What is a disgrace is that the NHS can’t work out how to do what America did for Whitney Dafoe.
rvallee
Senior Member (Voting Rights)
The legal definition is a death that isn't caused by a direct intervention, e.g. a surgery. So a death that happens because nothing was done to prevent it.
But that doesn't make it impossible to prevent. In fact it was preventable, but they're eating their cake and having it too.
I have zero confidence that the fact that this whitewash depends on severe ME being an inevitable cause of natural death will be taken into account. It will simply be brushed aside. It will either continue to be said that ME doesn't kill, or that it's extremely rare. And it will pass because those deaths rarely happen at hospitals, even less so now because of this cover-up.
It doesn't change that much, but wow does it say a lot about why there has been zero progress, how this is all 100% a choice.
ME/CFS Science Blog
Senior Member (Voting Rights)
I think this is plain wrong. Guidelines recommend going to NJ if NG is not tolerated. This is common in gastroparesis where the stomach doesn't tolerate the feeding but the gut often does. There are also other options such as PEG-J or Jejunostomy with lower risk of aspiration. And if all that failed or was not possible there was the option of TPN. From what I read/hear, it is possible to live many years on TPN if patients are followed up by an expert team.
Was any expert, a gut-specialist, consulted to check if what Dr. Roy was saying was true or not?
MrMagoo
Senior Member (Voting Rights)
No. any quotes from today are the Coroner summarising what was given in evidence during the inquiry.
ME/CFS Science Blog
Senior Member (Voting Rights)
Thanks, I'm concerned that the Coroner is taking Dr. Roy's explanation for the truth, while this should have been treated as the heart of the matter and scrutinised by independent experts.
From reading guidelines on enteral feeding it is very hard to believe that there were no other options and that nothing more could have been done. All they tried was an NG-tube.
MrMagoo
Senior Member (Voting Rights)
I’d guess there were protocols backing up what he said, in the evidence bundle. And the absence of any ME specific protocols.
ME/CFS Science Blog
Senior Member (Voting Rights)
The news articles make it sound like the main problem was that there are no ME specialist clinics and that the doctors did not have experience with ME.
From what I picked up from the inquest, the problem was that the doctors had heard of ME and believed that they should not try to medicalise it. I think that explains the strange decision of not exploring artificial feeding options which are recommend by guidelines and used routinely for other health conditions where people aren't left to die of malnutrition.
From what I picked up from the inquest, the problem was that the doctors had heard of ME and believed that they should not try to medicalise it. I think that explains the strange decision of not exploring artificial feeding options which are recommend by guidelines and used routinely for other health conditions where people aren't left to die of malnutrition.
Yann04
Senior Member (Voting Rights)
They say her death was inevitable as she couldn’t feed herself and NJ/PEG failed.
They say they couldn’t consider TPN as risk of sepsis.
If death inevitable without TPN, TPN should still be done despite high risk of death from sepsis?
Better some chance of survival than none?
I don’t understand the logic…
Edit: NJ/PEG weren’t tried, error on my part
They say they couldn’t consider TPN as risk of sepsis.
If death inevitable without TPN, TPN should still be done despite high risk of death from sepsis?
Better some chance of survival than none?
I don’t understand the logic…
Edit: NJ/PEG weren’t tried, error on my part
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ME/CFS Science Blog
Senior Member (Voting Rights)
Could be but doubt it. Would be interested in seeing that protocol if it exists. Even the bad guidelines that we discussed here on S4ME and that do not want to medicalise functional problems are not that bad that they would recommend against trying PEG-J or TPN if there is a clear risk of starvation.
So they did try NJ (from the nose to the gut) and PEG (opening directly through the stomach)? I haven't followed things closely but I thought they only tried a NG tube (from the nose to the stomach).
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