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

cassava7 said:
The focus never was on my gastroparesis per se or ME/CFS but always on my nutritional status.
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Copied from another thread and apologies if that has been discussed elsewhere:

How is the nutritional status assessed?

Question prompted by...

ukxmrv said:
Dr Warren seems to think that there was an improvement and 'upwards trajectory' which is at odds to what was happening.
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So on what did Dr. Warren base his assessment/ on what should he have based it? Did they measure all relevant parameters that they should and could have?

E.g. did they monitor her weight or if that wasn't possible due to inability to stand, did they acknowledge that and measured surrogates?

And...

ukxmrv said:
Dr Warren was also not interested on her fluid intake as he said her blood kidney tests (when they did them) were fine.
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Is this sufficient for assessing hydration ?

Edit: And did the doctor in charge at her first admission to hospital at least recommend monitoring her nutritional status and what to do if it worsened ?
 
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Trial By Error: Guardian Publishes Response to Boothby O’Neill Inquest from Ranking Member of the CBT/GET Ideological Brigades

My heart sinks every time I see another ridiculous article from a member of the CBT/GET ideological brigades. They repeat the same bogus arguments that we’ve heard for years—arguments that have already been refuted time and again. So let’s take a look at the most recent iteration of this tiresome dog-and-pony show—physician Alastair Miller’s reflections in The Guardian on the inquest into the death of Maeve Boothby O’Neill. (I have been attending daily in County Hall in Exeter, a university town in southwest England; I posted my thoughts on the first week of testimony here.)

https://virology.ws/2024/07/29/tria...g-member-of-the-cbt-get-ideological-brigades/
 
Andy said:
Trial By Error: Guardian Publishes Response to Boothby O’Neill Inquest from Ranking Member of the CBT/GET Ideological Brigades

My heart sinks every time I see another ridiculous article from a member of the CBT/GET ideological brigades. They repeat the same bogus arguments that we’ve heard for years—arguments that have already been refuted time and again. So let’s take a look at the most recent iteration of this tiresome dog-and-pony show—physician Alastair Miller’s reflections in The Guardian on the inquest into the death of Maeve Boothby O’Neill. (I have been attending daily in County Hall in Exeter, a university town in southwest England; I posted my thoughts on the first week of testimony here.)

https://virology.ws/2024/07/29/tria...g-member-of-the-cbt-get-ideological-brigades/
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Great looking forward to reading

Exeter is a city btw (it has a cathedral)
 
MSEsperanza said:
Copied from another thread and apologies if that has been discussed elsewhere:

How is the nutritional status assessed?

Question prompted by...
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In my case, every time I go to the clinical nutrition unit at the hospital, they measure the following biomarkers:

- Weight & BMI
- Extensive bloodwork with a focus on electrolytes & minerals, vitamins and hormones (complete blood count, ionogram, liver, kidney, lipid & thyroid panels, etc)
- Electrocardiogram
- Indirect calorimetry to assess energy expended (i.e. calories burned) at rest
- Body tissue composition with bioimpedance electrical analysis
- If needed, a Xray to check the position of my NJ tube

Out of those, my BMI and bloodwork seem to be the most important parameters for the doctors.
 
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dave30th said:
Ha! As a native New Yorker, it's kind of a town to me! But, yes, I guess I should call it a city next time.
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Ooooh Dave, places that are cities have a real “thing” about being a city. Originally they would need to have a Catherdral or a University, so there aren’t “university towns”. The requirements have changed since. Each year there are towns clamouring for city status to Parliament. Be careful, you’ll get pushback!
And the NHS clinic in Liverpool is still called the CFS service…

Brilliant write up.
 
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Sbag said:
An interesting article from PULSE (a GP publication )

“Behind the headlines: A case study in how the press can blame a blameless GP”

Pulse examines the media coverage of the inquest of a woman with ME as headlines abound blaming her GP. Maya Dhillon looks at the case and questions why these dangerous headlines are being used

https://www.pulsetoday.co.uk/analys...dy-in-how-the-press-can-blame-a-blameless-gp/

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Given the joint response to the NiCE Guideline that the RCGPs signed their victim status is a bit shaky

https://www.rcgp.org.uk/representing-you/policy-areas/guidance-on-me-cfs
 
MSEsperanza said:
Copied from another thread and apologies if that has been discussed elsewhere:

How is the nutritional status assessed?
Click to expand...
Weight measured weekly, together with using a height measurement to look at BMI. This and a short food interview would be most common and easiest to do for someone not trained in nutrition. Well for the food interview training helps but for someone who is an inpatient they’re not always asked only their plates are looked at before/after a meal to see if they have eaten well or not.

@cassava7 has a more extensive list (cool to see that!) but as mentioned the weight/BMI is the most used one. And easiest to understand and use.
 
Thanks as ever David. It's good to draw together Miller's infamous historical and current association with the BPS cabal. I think that Guardian article is deeply insensitive to pwME, their families, and those mourning loved ones. I hate seeing Maeve's image at the top of such a travesty of the truth. I like the quote from Putrino in one of the comments.
 
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Yann04 said:
I wonder if Maeve’s family could request (or demand) her image not be used next to such a piece?
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That would be an excellent idea, if someone knows how to contact the family to put that suggestion to them. It's insulting to her memory and to her parents that her photo is being used in such an underhanded, self-promoting way.


(Edited to change 'contact them' to 'contact the family', for clarity)
 
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MSEsperanza said:
Copied from another thread and apologies if that has been discussed elsewhere:

How is the nutritional status assessed?

Question prompted by...



So on what did Dr. Warren base his assessment/ on what should he have based it? Did they measure all relevant parameters that they should and could have?

E.g. did they monitor her weight or if that wasn't possible due to inability to stand, did they acknowledge that and measured surrogates?

And...



Is this sufficient for assessing hydration ?

Edit: And did the doctor in charge at her first admission to hospital at least recommend monitoring her nutritional status and what to do if it worsened ?
Click to expand...

There is more information in this interview with Maeve' mother on fluid intake . Said it was 'dangerously low' in hospital

https://mecfs-med-ed.org/2023/05/31...e-daughter-maeve-died-at-27-of-severe-me-cfs/

With regards to weighing I think one doctor said it wasn't possible as Maeve could not stand. They were trying to assess this through skin fold on her arm? I think.
 
ukxmrv said:
There is more information in this interview with Maeve' mother on fluid intake . Said it was 'dangerously low' in hospital

https://mecfs-med-ed.org/2023/05/31...e-daughter-maeve-died-at-27-of-severe-me-cfs/

With regards to weighing I think one doctor said it wasn't possible as Maeve could not stand. They were trying to assess this through skin fold on her arm? I think.
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@MSEsperanza With fluid there are f.ex common signs of dehydration to look for, but also doing an interview and calculating how much fluid someone takes in and compare to what they are presumed to need. If making a diet plan with tube feeding the liquid feeding solution would be part of both the food and fluid quota, if more fluids are needed than that supplied by the feeding solution extra water is provided.

On the weight it was said she couldn't be, but that arm circumference was used instead (see @Nightsong brilliant recap in post #416) Arm circumference has its limitations when it comes to following someone's nutrtion status as we as individuals lose/gain weight at different rates at different places on our bodies.
 
On the specific question of fluid intake in Warren's testimony from my notes (I wish I had the energy to write more of these up into summaries):
SB Q to Warren: if you knew that she was getting 790 calories, lying prone so not using as much energy and an average of 800 ml of fluid - would that have affected the way you evaluated her?

Warren replied would not have been overly concerned as when blood tests were performed kidney function was alright & as the body is very good at conserving water when it needs to her fluid intake was probably sufficient
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Something else that I found troubling in that day's testimony that I didn't include in my previous writeups: the lawyer for the RD&E tried to justify the Trust's lack of response to Dr Weir's letter - the warning letter he had addressed to the CEO - in terms of Trust policy & by saying that they had instead written to Maeve's father: "as I've indicated the Trust policy is you wouldn't liaise" except "with the family", so "Dr Weir shouldn't have been getting a direct response". This struck me as wholly unprofessional.
 
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Jonathan Edwards said:
There are weigh-beds.
It is hard to believe that anyone was taking the problem seriously.
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Malnutrition isn't, as has been stated in numerous reports from healthcare all over the world. For most it "only" gives longer hospital stays with more complications and readmissions and potentially worse prognosis going forward, but as was the case here there are also deaths.

Edit to add:
There is "nutritionDay" which is supposed to place focus on malnutrition and collect data to allow countries to see how well their healthcare units deal with malnutrition. I'm not sure how well known it is despite having been in existence since 2006. They produce reports from countries that have participated, Great Britain only has reports from 2012 and 2014.

I don't like the webpage nor how the reports are formatted, but the idea behind it is good even if the execution is lacking. Reports can be read here:
https://www.nutritionday.org/en/about-nday/national-reports/index.html
 
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