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

[Sid]

I didn’t have a clue until the past few days.

Every Reddit thread we looked at on this forum going back years has been like this. This is because the view that ME/CFS is a functional disorder is the prevailing paradigm they are taught. Most doctors adhere to this view, it’s just that most of them are too smart to post their views on social media with such rudeness.

 

[Haveyoutriedyoga]

***TRIGGER WARNING***

I’ve just happened on this Reddit. Thread about Carla – think it’s relevant here in the context of the Reddit thread about Maeve. There are some upsetting and shocking comments in here too. I can’t believe these are the people who are supposed to care for us. I know medical disbelief is a huge problem we’ve likely all experienced but I’m shocked at the callousness.



ETA: Do you think journalists know these threads talk like this? I didn’t have a clue until the past few days. If the public could see what we face it might help people understand what we face and why hospitals are often a dangerous environment for pwME.

Thing is they are unverified anonymous people so no point in quoting them. If people do come across these sorts of posts I hope it reveals what we are up against and reinforces how entrenched things are.

 

[Sid]

I personally never click on these Reddit threads anymore, they just make me despair.

 

[ukxmrv]

Dr Warren doesn't seem to understand why if Maeve's condition was deteriorating why she was reported as wanting to be discharged.

 

[ukxmrv]

Coroner talking about a Regulation 28 report. She is considering her conclusions first before making a decision if there will be one. She will not be giving her determinations next Friday though. Although it sounds like it's won't be long after.

 

[MrMagoo]

Drs Patel and Praag giving evidence tomorrow. Inquest is non-sitting day on Monday.

 

[ME/CFS Skeptic]

I think the approach would be via gut first and always, unless not possible. Ie bypass upper GI tract via gastrojejunostomy or direct jejunostomy, in eg facial/oral trauma.

Anyone heard anything about PEG-J, PEJ or jejunostomy being considered (i.e.placing the feeding tube directly in the stomach or intestines): were these tried and not tolerated?

I find it strange that the discussion seems to focus on a nasal tube (problematic because of risk of aspiration and not being able to sit up) or TPN (risk of catheter thrombosis and infections). From what I have read, these other options are usually considered in between as SNT Gatchaman's showed and have smaller risks for the ones discussed above.

It's probably not that much, principally stick with an escalator from nutritional modification -> NGT -> NJT -> PEG -> GJT -> PN -> TPN.

 

[MrMagoo]

Some tweets on Sarah Boothby’s questions to Dr Warren.

Sarah asked if he knew that in pwME “building tolerance” makes them more symptomatic? He says they needed to maintain working gut.

He says he made decisions “on the hoof” on her 3rd admission, it was a Saturday which is more difficult…

 

[MrMagoo]

Anyone heard anything about PEG-J, PEJ or jejunostomy being considered (i.e.placing the feeding tube directly in the stomach or intestines): were these tried and not tolerated?

I find it strange that the discussion seems to focus on a nasal tube (problematic because of risk of aspiration and not being able to sit up) or TPN (risk of catheter thrombosis and infections). From what I have read, these other options are usually considered in between as SNT Gatchaman's showed and have smaller risks for the ones discussed above.

Dr Roy outlines all the options in the opening statement, although there wasn’t much mention after that. Dr Roy said NJ? Required sedation so it was risky. He was also extremely focussed on there needing to be a fully sterile environment for TPN, and the infection control/nursing burden. PEG/J just gets a passing mention at times.
So it seems that NG was considered and trialled in July, but Maeve couldn’t tolerate it and asked for removal. The Drs seem to be giving evidence Maeve wanted to feed orally, so the other types weren’t progressed?
This is my simple summary from what I’ve seen on twitter. I’m also unclear as to how accurate it is that Maeve essentially only wanted oral feeding after July?

 

[MrMagoo]

Sarah Boothby questions Dr Warren on the skill set of staff on Lomond ward vs Bolham ward, he says there’s no difference.
Bolham is neurology and Lomond is ?endocine?

Dr Warren said he didn’t feel there could be a contingency plan

Sarah asks why it was easy for Lomond ward to remove tube and say resume oral feeding

 

[Midnattsol]

Anyone heard anything about PEG-J, PEJ or jejunostomy being considered (i.e.placing the feeding tube directly in the stomach or intestines): were these tried and not tolerated?

I find it strange that the discussion seems to focus on a nasal tube (problematic because of risk of aspiration and not being able to sit up) or TPN (risk of catheter thrombosis and infections). From what I have read, these other options are usually considered in between as SNT Gatchaman's showed and have smaller risks for the ones discussed above.

See this post, not lot of information on the PEG, PEJ not mentioned:

22 July was before NG tube was removed
There was an MDT
DrWarren now going over PEG feeding- why not
View attachment 22552

And yes, these options should have been considered.

 

[Midnattsol]

Dr Roy outlines all the options in the opening statement, although there wasn’t much mention after that. Dr Roy said NJ? Required sedation so it was risky. He was also extremely focussed on there needing to be a fully sterile environment for TPN, and the infection control/nursing burden. PEG/J just gets a passing mention at times.
So it seems that NG was considered and trialled in July, but Maeve couldn’t tolerate it and asked for removal. The Drs seem to be giving evidence Maeve wanted to feed orally, so the other types weren’t progressed?

Risks to sedation and infection considered with nutrition support, but not risk of not feeding? Taking nursing burden into account with nutrition support, but not from syringe feeding? Some of this seems very like missing the forest for the trees. Only seeing that one thing (recommendation/guideline) not what would happen if nothing was done.

 

[Robert 1973]

I think it should be made clear to doctors unfamiliar with ME that pwME often have a blood volume 20% lower than a healthy person – the blood itself isn’t necessarily out of balance (electrolytes etc) but we just have so much less of it and that’s why IV saline needs to be administered. Dr Bell talked a lot about the 20% less volume and pointed out that if you lose 25%+ in a car accident it can be fatal – that always stuck with me as it shows what our bodies are trying to deal with.

I mention this because I think yesterday (and sorry if I’ve gotten this wrong) Dr Weir said he’d recommended IV saline for Maeve and it wasn’t administered – he felt it may help her be fed at an incline, which seems a key point to me.

Is there reliable evidence of reduced blood volume in people with ME/CFS?

Is there an S4ME thread on it?

 

[Nightsong]

The inquest has ended for the day and will resume tomorrow, with Drs Prague and Patel scheduled to attend. At the end there was a discussion about scheduling issues and when various witnesses would attend, a discussion about the possibility of a regulation 28 report being made and a discussion around future lawyers' submissions. It seems Maeve's parents are at a disadvantage here as the other parties are legally represented and will be given opportunities to make submissions as to the law.

The coroner stated that she will not be giving her conclusions & determinations next Friday but will require further time to properly consider all the evidence. She also said that she was not going to hear Dr Hemsley next Friday either, although she would give Maeve's parents the opportunity to question Dr Hemsley.

I'll try to write something about the testimony of Drs Roy and Warren when I'm able.

 

[MrMagoo]

Some reporting of Dr Roy’s evidence by a local paper
https://www.shropshirestar.com/news...-young-woman-suffering-with-me-inquest-hears/

 

[Jonathan Edwards]

Is there reliable evidence of reduced blood volume in people with ME/CFS?

Is there an S4ME thread on it?

I don't think there is well established evidence. There are some old volume studies but a lot of these studies have methodological problems.

One thing that I think is important to consider is that if people with ME/CFS do have low blood volume I think much the most plausible explanation for that is that they have been recumbent much of the time. Lying down produces quite major changes in fluid, oncotic and haemodynamic physiology. So lying down may not be a good thing to encourage people with ME/CFS to do.

Saline infusion is very unlikely to make a difference for more than about half an hour and my current view is that it should not be confused with the need for nutrition and normal fluid intake.

Again, this is something I mentioned in the Qeios piece. There should be some decent physiological studies of postural and fluid management over an extended period. Current recommendations, inasmuch as there are any, may be making things worse.

 

[Robert 1973]

Coroner talking about a Regulation 28 report. She is considering her conclusions first before making a decision if there will be one. She will not be giving her determinations next Friday though. Although it sounds like it's won't be long after.

I had to look up what a Regulation 28 Report is. The following info is from: https://www.wwl.nhs.uk/coroners-regulation-28-reports

Coroner’s Regulation 28 Reports

Coroner’s Regulation 28 Reports (Prevention of Future Death Reports – PFD)

In certain circumstances a person’s death is reported to HM Coroner to determine whether an Inquest must be held. An Inquest is an investigation into a person’s death to establish, who they were, when they died, where they died and how they came about their death. If any information is revealed as part of the Coroner’s investigation or during the course of the evidence heard at the Inquest, which gives rise to “a concern that circumstances creating a risk of other deaths will occur, or will continue to exist in the future;” and if the Coroner is of the opinion that action needs to be taken, under Paragraph 7 of Schedule 5 of the Coroner and Justice Act 2009, the Coroner has a duty to issue a report to a person, organisation, local authority or government department or agency.

The Coroner’s Regulation 28 Report will set out the concerns and request that action should be taken. The person, body or organisation in receipt of this report then has 56 days to provide the Coroner with their response, to include details of the actions taken and to reassure the Coroner that their concerns have been addressed to prevent future deaths. WWL, as a public organisation, has received Regulation 28 Reports. The Trust takes these reports very seriously and ensures that a response is provided to the Coroner within the required timeframe.

All Regulation 28 Reports and the responses are sent to the Chief Coroner. In most cases the Chief Coroner will publish the reports and responses on the judiciary.gov.uk website. Please find a link to the relevant section of the website here.

 

[FMMM1]

NGT -> NJT -> PEG -> GJT -> PN -> TPN

Slightly shocked when I even read the full form of words i.e. of these abbreviations. Still, as you have stated, these are relatively commonly used in other diseases/circumstances.

But then make it clear that the risk of death from starvation outweighs the risk of death

Yes, you'd rather unpleasant treatment, for your 27 year old daughter [who wished to live and wasn't e.g. terminally ill], given the alterative.

 

[Nightsong]

(Part 1)

Dr Roy - consultant gastroenterologist at the RD&E - was the first witness. Worked in Colchester, New Zealand, then in Exeter and now as a gastroenterologist and intestinal failure expert in Bath. His subspecialty is nutrition and IF. He states that he has an additional interest in the treatment of "disorders of gut-brain interaction" where there is an "overlap of organic and functional pathologies", mentioning in that context his treatment of neurodivergent patients and patients with mental health needs.

He spends time explaining dietetics, gastroenterology basics like enteral vs parenteral and describing his team, discussing how things worked at the RD&E; giving the example that starting NG on a ward in a non-complicated case would be performed by ward dieticians and would not be elevated to his nutrition & IF team. He explains that his team looks after more complex IF patients including those which (as a tertiary team) have been referred from other centres.

He continued to be involved in Maeve's case because of its complexity although there was no question of IF. His nutrition team doesn't take responsibility for the overall care of patients (that's the named consultants on the ward); his service is an "inreach service" seeing a broad cohort of patients. The coroner asks him how he saw himself in regard to Maeve's care: he explains that he was not Maeve's consultant at any stage, only meeting her & SB on two occasions but his involvement was only because the case was "so challenging" and a "very desperate situation" and that is why he added Maeve to his feeding-issues MDT (which usually concerned patients stable in the community who may need a PEG or similar intervention).

She asks if he had ever treated anyone before with this severe ME? "Not to this degree." He states that in his IF and gut-brain interaction work it is not uncommon to deal with patients with similar severity but never secondary to severe ME. She asks if he had ever treated patients with ME at all; he states that he has seen patients with mild or moderate ME but would have seen them for another GI-related reason and that this was the first case where he had been involved with a patient with very severe ME.

(By the way, unlike the Tweeters, I'm a little concerned about all these updates being Googleable; mods, do you think a members-only thread would be more suitable?)

 

[MrMagoo]

(Part 1)

Dr Roy - consultant gastroenterologist at the RD&E - was the first witness. Worked in Colchester, New Zealand, then in Exeter and now as a gastroenterologist and intestinal failure expert in Bath. His subspecialty is nutrition and IF. He states that he has an additional interest in the treatment of "disorders of gut-brain interaction" where there is an "overlap of organic and functional pathologies", mentioning in that context his treatment of neurodivergent patients and patients with mental health needs.

He spends time explaining dietetics, gastroenterology basics like enteral vs parenteral and describing his team, discussing how things worked at the RD&E; giving the example that starting NG on a ward in a non-complicated case would be performed by ward dieticians and would not be elevated to his nutrition & IF team. He explains that his team looks after more complex IF patients including those which (as a tertiary team) have been referred from other centres.

He continued to be involved in Maeve's case because of its complexity although there was no question of IF. His nutrition team doesn't take responsibility for the overall care of patients (that's the named consultants on the ward); his service is an "inreach service" seeing a broad cohort of patients. The coroner asks him how he saw himself in regard to Maeve's care: he explains that he was not Maeve's consultant at any stage, only meeting her & SB on two occasions but his involvement was only because the case was "so challenging" and a "very desperate situation" and that is why he added Maeve to his feeding-issues MDT (which usually concerned patients stable in the community who may need a PEG or similar intervention).

She asks if he had ever treated anyone before with this severe ME? "Not to this degree." He states that in his IF and gut-brain interaction work it is not uncommon to deal with patients with similar severity but never secondary to severe ME. She asks if he had ever treated patients with ME at all; he states that he has seen patients with mild or moderate ME but would have seen them for another GI-related reason and that this was the first case where he had been involved with a patient with very severe ME.

(By the way, unlike the Tweeters, I'm a little concerned about all these updates being Googleable; mods, do you think a members-only thread would be more suitable?)

I’m sorry, what is IF meaning here please?