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

Just to say that I'm not at all well enough today to write the kind of updates that I did yesterday, but I've listened to the entire morning session and Dr Roy's testimony was very illuminating, to say the least. There was no mention of RCP guidelines being a limiting factor; the emphasis re unsuitability of PN related to hygiene, burden for Maeve of additional nursing care & hence the maintenance of sterile conditions.

I've made extensive handwritten notes and, if there is interest, I'll try to put together a post later, or tomorrow, with the kind of details that ordinary journalists will likely omit from their stories.

The hearing is now adjourned until 2:10 when Dr Warren, an endocrinologist, will be giving evidence.
 
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From Kags on twitter “Action for ME medical adviser consults with Dr, who comes away thinking they’ve been discussing “theories about ME” and there’s no decisive evidence

Dan Wyke - The Coroner states lack of dietetic (edit spelling) support in NICE guidelines and indicates she will address this

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Nightsong said:
Just to say that I'm not well enough today to write the kind of updates that I did yesterday, but I've listened to the entire morning session and Dr Roy's testimony was very illuminating, to say the least. There was no mention of RCP guidelines being a limiting factor; the emphasis re unsuitability of PN related to hygiene, burden of additional nursing care & hence the maintenance of sterile conditions.

I've made extensive handwritten notes and, if there is interest, I'll try to put together a post later, or tomorrow, with the kind of details that ordinary journalists will likely omit from their stories.
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Yes please!
There’s a lot of good questions being put to Dr Roy from what people are tweeting, but there’s a lack of response being reported. He’s also being accused of waffling, and seems to be getting peoples backs up so it’s hard to parse what he’s actually saying.
 
MrMagoo said:
Dan Wyke - The Coroner states lack of dietician support in NICE guidelines and she will address this
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I've just checked. In the section on Severe ME:
https://www.nice.org.uk/guidance/ng...e-for-people-with-severe-or-very-severe-mecfs
Dietary management and strategies
1.17.10
Refer people with severe or very severe ME/CFS for a dietetic assessment by a dietitian with a special interest in ME/CFS.

1.17.11
Monitor people with severe or very severe ME/CFS who are at risk of malnutrition or unintentional weight loss because of:

  • restrictive diets

  • poor appetite, for example linked with altered taste, smell and texture

  • food intolerances

  • nausea

  • difficulty swallowing and chewing.

    Follow the recommendations on screening for malnutrition and indications for nutrition support, in the NICE guideline on nutrition support for adults.
1.17.12
Give advice to support people with severe or very severe ME/CFS, which could include:

  • eating little and often

  • having nourishing drinks and snacks, including food fortification

  • finding easier ways of eating to conserve energy, such as food with softer textures

  • using modified eating aids, particularly if someone has difficulty chewing or swallowing

  • oral nutrition support and enteral feeding.
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see my next post for 2007 guideline
 
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I'm not on Twitter but I think some of the Tweets posted above are muddled. The psychological support statement is taken out of context. The discussion of the lack of NICE guidance regarding nutrition in severe ME - the reference I heard discussed was to the old NICE guideline that was in operation at the time, not the latest guideline.
 
SNT Gatchaman said:
I would think it would be reasonably straightforward to modify an existing guideline - perhaps from another disease rather than general purpose - and cover off the specific features relevant to very severe ME/CFS.
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The problem that we have had to face is that NICE have complex requirements for any guideline process such that even a modification seems to require setting things up that would cost a lot of money. A committee has to be convened. Evidence has to be assessed...

Interested parties have been told that NICE is not interested in making modifications.

Having discovered that I finally came to the conclusion that no modifications are needed for the ME/ guideline. Whether modifications are needed for nutritional support guidelines I do not know but my reading of the RCP edvice document is that it is fairly clear that there are no strict rules about what is allowed - rather that each case has to be considered on its own merits.
 
Split from previous post which I added to.

The old 2007 guideline, which would have been current at the time of Maeve's hospital stays, mentions dietetics as a possible specialism to be involved in care for pw severe ME. It also recommends an activity program on the principles of CBT/GET. I can't see anything else on diet.
https://huisartsvink.wordpress.com/wp-content/uploads/2022/02/nice-2007-me-cfs-guideline.pdf


The 2007 guideline says:
1.4.7.4 Some people with CFS/ME need supplements because of a restricted dietary intake or nutritional deficiencies. Healthcare professionals should seek advice from a dietitian about any concerns.

1.4.3 Diet See also recommendations on managing nausea (1.4.1.4) and bowel symptoms (1.4.1.5), and use of supplements (1.4.7.2–4). 1.4.3.1 Healthcare professionals should emphasise the importance of a well-balanced diet in line with 'The balance of good health' [7] . They should work with the person with CFS/ME to develop strategies to minimise complications that may be caused by nausea, swallowing problems, sore throat or difficulties with buying, preparing and eating food. 1.4.3.2 Healthcare professionals should emphasise the importance of eating regularly, and including slow-release starchy foods in meals and snacks. The physiological consequences of not doing so should be explained to the person with CFS/ME.
 
MrMagoo said:
Questioning of Dr Roy by Sean O’Neill
He asks about the changes at RD&E for patients with SVS ME. dr Roy says he no longer works at RD&E….everyone did their absolute best for Maeve
View attachment 22547
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I’m just highlighting this as it is both moving and important:

“[Sean O’Neill]: I feel I didn’t do everything in my power to help her, do you think the RD&E did everything possible to save Maeve?​

Dr Roy: I do, everyone tried their absolute best, I understand your loss. This was very sad & we tried very hard which was why I remained involved.”
​
https://twitter.com/user/status/1816439793053487544
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I have great respect for Sean for admitting the mistakes he made in being slow to understand that nature of Maeve’s illness (because of what he was being told by doctors). He has become a valuable advocate – and his voice is all the more powerful for his honesty and humility about his journey of understanding. I hope there are doctors who are learning from that.
 
Jonathan Edwards said:
Sadly, I don't see that happening or getting anywhere if tried. Again, I see an asymmetry in these proceedings, inevitably on the side of the establishment. Dr Weir will not have a legal representative I guess. The family may well do, but legal representatives often do not get the scientific arguments quite right - as evidenced by the representative for the hospital.

I have been in a number of medical trials and although I have been consistently impressed by the ability of solicitors preparing cases to analyse problems with great insight, when it comes to the court barristers often read from a brief without really knowing the necessary details.

Maybe I am being pessimistic and the hospital people will be adequately interrogated.
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I’m not sure about Sarah’s professional background but obviously Sean as a journalist is used to questioning people anyway they both seem to have been doing an amazing job so far.
 
Nightsong said:
Just to say that I'm not at all well enough today to write the kind of updates that I did yesterday, but I've listened to the entire morning session and Dr Roy's testimony was very illuminating, to say the least. There was no mention of RCP guidelines being a limiting factor; the emphasis re unsuitability of PN related to hygiene, burden for Maeve of additional nursing care & hence the maintenance of sterile conditions.

I've made extensive handwritten notes and, if there is interest, I'll try to put together a post later, or tomorrow, with the kind of details that ordinary journalists will likely omit from their stories.

The hearing is now adjourned until 2:10 when Dr Warren, an endocrinologist, will be giving evidence.
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Don’t push yourself we will manage. Wait until you feel up to it
 
Telegraph article (from yesterday) available in full
NHS staff treated woman who died from ME ‘as if she was to blame’

NHS hospital staff treated a young woman who died from ME as though she was to blame for her condition, a leading expert in the illness has claimed.

Dr William Weir, a Harley Street consultant, said Maeve Boothby O’Neill may have missed the chance of life-saving treatment in part because of the “apathy” of consultants at the Royal Devon and Exeter Hospital (RD&E), an inquest heard.
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NHS staff treated woman who died from ME ‘as if she was to blame’ (msn.com)
 
Haveyoutriedyoga said:
Is there any specialist training?
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Maybe 'is there any training?'

Specialist training is training after passing the general College exams for entry into specialities.

There is no specialist training for ME/CFS for adults because ME/CFS does not belong to any specialism (unless the liaison psychiatrists have training!). For children there is specialist training because paediatrics covers all conditions in children and they realise that ME/CFS exists.
 
SNT Gatchaman said:
I would think it would be reasonably straightforward to modify an existing guideline - perhaps from another disease rather than general purpose - and cover off the specific features relevant to very severe ME/CFS.

It's probably not that much, principally stick with an escalator from nutritional modification -> NGT -> NJT -> PEG -> GJT -> PN -> TPN. But then make it clear that the risk of death from starvation outweighs the risk of death from aspiration, noting that the patient will usually have competent gag/cough and can protect their airway better than eg post-stroke or neurodevelopmental impairment. I don't know about the idea of an IV fluid bolus to temporarily overcome OI so that the patient can elevate their head even 20-30°, but one could trial this if IV access allowed.

I think if this were instituted we might even prevent any further loss of life directly from starvation itself. There were people commenting in the reddit thread posted earlier writing that they had been in this situation with VS ME/CFS and TPN-dependent and recovered to be able to eat normally (and post on Reddit).
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Except for outright stating that the risk of death outweights the risk of death from aspiration, I'm not sure I see the difference between this and general guidelines for providing nutrition support for any patient? Yes if the patient has a functioning gut we want food to be provided orally/through a gastric or jejunum tube, but that is not always possible and supplementing with PN is not unheard of. Setting up a diet plan with a combination of tube feeding and PN, or even TPN, is something any dietitian is trained to do.
 
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