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

dratalanta said:
Thanks @Valerie Eliot Smith. That’s extremely helpful.

Am I right in thinking that “unlawful killing” is available to coroners as a conclusion in cases of criminal violent deaths or of gross negligence manslaughter, though that conclusion is very rarely returned?
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Many thanks for pointing that out and apologies @dratalanta

I had phrased that wrongly and omitted other possibilities. I have now corrected it.

Never a good idea trying to do things late at night after a long day! I will be checking for any other errors tomorrow.
 
Kitty said:
This is their article from yesterday.

https://www.bbc.co.uk/news/articles/c2q03ppzzz0o
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Thank you and I’m glad they covered Maeve’s inquest. (I tried to search for an article on the BBC national news site earlier but it didn’t show me any articles at all, which is why I thought they hadn’t – I guess because it’s by BBC Devon as someone pointed out earlier (and thank you for that!)

Hopefully the national site might highlight the inquest in the next few days!
 
Sbag said:
A couple of other things that I noted from today:
- he said that they had changed the way they dealt with ME patients from 2017 which went against the NICE guidelines at that time. He said”guidelines were for people who don’t work every day in that field”. Ie a GP could go and look at them. But because he was part of the committee reviewing the evidence he knew that the PACE trial had been debunked. He did go into a bit of detail about how the previous guidelines were all based on one study which used people that hadn’t been selected properly.
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I assume this is Dr Strain.
I know I'm commenting on incomplete information third hand, but we really need our advocates to understand that the most significant problems with the PACE trial and others like it don't include participant selection. It makes it seem that the treatments work for some trial participants. No. The trials are flawed because bias is created by using subjective outcomes with treatments that are not only unblinded but actively encourage participants to ignore their symptoms. And, even then, the outcomes have been essentially indistinguishable from no treatment. The treatments haven't worked.
 
Hutan said:
we really need our advocates to understand that the most significant problems with the PACE trial
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One thing that continues to puzzle me is that, unless I am mistaken, not a single ME physician regularly uses S4ME. I have learnt almost everything about the illness, including the background research, from following the forum. When I was involved in RA and lupus I followed a lupus forum in the same way (there weren't any RA forums at least in those days).

Repeatedly I see physicians making public statements as if they have only a passing knowledge of what has really been going on. If patients are interested enough to have an in depth knowledge of their illness, why don't the medics even try!!
 
Hutan said:
I assume this is Dr Strain.
I know I'm commenting on incomplete information third hand, but we really need our advocates to understand that the most significant problems with the PACE trial and others like it don't include participant selection. It makes it seem that the treatments work for some trial participants. No. The trials are flawed because bias is created by using subjective outcomes with treatments that are not only unblinded but actively encourage participants to ignore their symptoms. And, even then, the outcomes have been essentially indistinguishable from no treatment. The treatments haven't worked.
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Sorry yes Dr Strain. He wasn’t supposed to be talking about the PACE trial but he used that information to illustrate a point. He had gone off topic by talking about it but managed to give that brief info before he had to go back to what he was talking about.
I think I have not conveyed it very well so please don’t read too much into it - he was very good in the way he portrayed it in the minute that he managed to talk about it.
 
Post with some updates.

Coroner references Strain's testimony that there are likely a range of causes as to why people develop ME. Weir mentions various viral triggers & other triggers including malaria & vaccinations & suggests that abnormal immune response to stimuli underpins ME and also suggests that there is "ongoing immunological activity" which is "characteristic of every patient with this condition". Weir then read his report about Maeve.

Weir discussed his views about MCAS and that the occurrence of hives in Maeve's case represented MCAS & that blood tests for tryptase and histamine during such symptoms would be diagnostic. He goes on to talk about the use of sodium chromoglycate and famotidine. Sarah mentions a positive test that apparently found lowered mitochondrial function but a delay in processing meant the test was unreliable. Weir mentions this was a test for a heriditary mitochondrial disorder.

~1022 Discussing Weir's treatment recommendations - chromoglycate, famotidine, fludrocortisone, vitamin D & B12 & his recommended testing.

~1025 Agrees with Strain that no treatment but states that there are treatments to address the "physiological problems" of low blood volume etc. States that ultimately an immunological treatment will probably be developed. Mentions potential treatments to remove autoantibodies.

~1033 Discussing difficulties with chewing & swallowing. Maeve's doctor had concerns regarding aspiration. Weir states that feeding supine patients can increase the risk of aspiration although he thinks research suggesting that applies more to stroke patients who characteristically don't have much of a cough reflex, whereas in pwME the cough reflex preserved & he states that speaking to colleagues involved in NG feeding of pwME state they haven't found problems with aspiration. Emphasises importance of maintaining nutritional status.

~1037 Discussing letters re. nutrition. Weir reading his letter to one of Maeve's physicians about low blood volume & cortisol levels & suggests he has had success with fludrocortisone. States it is "imperative to try to increase blood volume to restore her ability to sit up/stand" & suggests measuring blood volume & cortisol. States he has one patient using normal saline through a central line & sees colleagues in US doing same thing.

~1044 Weir talking about the "pituitary gland being found to be defective". Discussing vasopressin & suggests a number of patients seen recently have insufficient ADH contributing to low circulating blood volume.

~1046 Coroner asks about Weir et al's enteral nutrition in pwME paper & says yesterday Strain stated that he was unaware of it at the time.

~1047 Weir talking about risks of aspiration & says that standard nursing practice is to feed someone with an NG to sit them up to 45 degrees. Says that Speight states fine to feed children supine & gives his opinion that when cough reflex is intact it is safe and states that the origin of this 45 degree protocol was in stroke patients who have an impaired cough reflex.

~1051 Coroner asks if pwME may in fact be too weak to cough. Weir replies that involuntary activities (such as breathing and coughing) appear to be fully preserved in pwME.

~1054 A back and forth about Strain and there being no protocol for supine feeding. Weir says Maeve clearly had gastroparesis & describing that condition & abnormalities of neurological & hormonal mechanisms controlling gastric motility & suspicions regarding abnormalities of vagus nerve function & says if there is vagus nerve dysfunction gastroparesis can occur.

~1055 Coroner asks about vomiting risk. Weir states that always risk-benefit with any procedure & he would've recommended NJ feeding instead. Coroner asks at 45 degrees or supine? Weir answers he would have tried to ensure blood volume replenished so making it easier to sit up & NJ feeding & gives his opinion that with feeding into the jejunum aspiration risk would be much less.

~1058 Mention of a Dr Roy (RD&E gastroenterologist) who was particularly concerned about the sepsis risk of parenteral feeding & also mentioned that in terminal cases TPN reduces QoL due to increased nursing burden and fluid overload. Weir again mentions risk-benefit & says appropriate to consider & mentions TPN not experimental & that it is a standardised procedure that he would consider appropriate.

~1108 Weir reads from a letter he wrote recommending TPN - "I am not exaggerating when I say that this may well save Maeve's life". In his letter he talks about the view that ME/CFS is due to "primarily psychological causes" and that "frequently patients with this condition have been regarded as perversely inactive". He states that diagnoses such as pervasive refusal syndrome are inappropriate and that there is "demonstrable organic pathology". He stated in the letter that a "considerable portion of the staff at the RD&E still hold to the view that ME/CFS has psychological causes" and took the view that her immobility was self-inflicted and that she was "not unreasonably reluctant" to be admitted because of this. He points out that she requires "life-saving treatment" and that the "dogma regarding ME/CFS that some of [Strain's] colleagues are perversely adherent to" needs to be tackled.

Now on a break so I'll take a break myself, and start a new post when things resume.
 
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Re concerns statements (above) that nothing will happen as a result of the inquest.
I recall attending a sort of prep talk given by a high profile planning barrister. Planning had transferred from central Government (back) to local government - UK devolved administration. The barrister noted that the judge had highlighted that he was giving the (new) local government planning authority the benefit of the doubt; however, he put them on notice that any future (similar) failures would not be judged as leniently.
Following that path, this inquest may e.g. highlight things which need to change i.e. to reduce the risk of this happening in the future - failure to address those failings will be judged harshly by coroners i.e. in the future. I wonder if the coroner is aware of/will read the document Jonathan has published? - that might help to clarify gaps/things that need to change.
 
The coroner stopped proceedings for a 10 minute break ( Dr Weir had been answering questions for an hour and a half by then - more to come) but I along with others cannot get back in.
They will probably allow reentries after lunch but there is no fixed time for this.

edit: it is being said on fb that reopening time after lunch is 1.50. No idea if this is the case.
 
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