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

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

 

Worth shouting at every opportunity because it's true, and even more so because we are absurdly accused of minimizing mental illness... by people who see nothing wrong with letting what they think are mentally ill people starve to death in immense suffering. The response from many MDs about it, blaming the victim with the same bigotry and ignorance that led to her negligent homicide, says it all.

No, it's them who clearly don't see mental health as important. For all the lies of the biopsychosocial model, this is the most perverse: it not only makes physical health worse, it especially makes mental health worse. All the mockery and the eye-rolling, snide comments and appaling comments make it very clear.

Although they are lies, the word is that those "functional disorders" are not malingering, that it's all "unconscious behavior", or whatever. Therefore this oppositional approach has no place, it only makes sense in the context of behavioral problems made consciously. And of course that's exactly what they mean. They believe very few of the things they say, they know they are false, are nothing but excuses for what they actually believe.

Technically, what's likely happening is that they see this as acceptable because people with severe mental illness can get that bad, and there is very little that medicine can do. But this is obviously not that, there is no amount of saying it that will make it so. It's all perfectly captured in "the bastard just don't want to get better", this sentiment is written all over the academic literature even though it's completely wrong.

They let people die for their beliefs. This is the definition of extremist beliefs, and it has no place whatsoever in health care or any other profession.

 

Exchange with Devon Council - Maeve wasn’t weighed, suboptimal calorie intake
DR Warren does not think notes of his exchange with Dr Shenton re Ng reflect the sentiments at the time

 

How the heck did any of these medical professionals cope with COVID 19 then?

 

I think specialist training in ME/CFS is a contradiction in terms? ME/CFS is a diagnosis by exclusion i.e. you look at all of the known/understood/treatable conditions, which could produce this outcome, and when you've eliminated them then you're left with a diagnosis of ME/CFS i.e. left to manage without making things worse.

 

Would it make sense that this is a consequence of being on the eating disorder unit, vs the neurological unit where they likely have the experience necessary to do it safely?

Because it sure looks a lot like it to me. Obviously the eating disorder unit would have a different approach to this, and that's exactly the problem. It was also their decision, made against protests from the Maeve, the family and consultants.

 

I get the gist that after NG failed, Maeve wanted to try oral feeding, or that’s what the Drs say anyway. See tweet.
Tweets mentions Dr Warren comes across as “offended he’s being questioned” and “obnoxious”
Timeline and dates would be a great help with this whole inquest, am sure the Coroners report will contain these.

 

Damn that thread is ignorant. A few good comments. Mostly complete ignorance and a very odd "us vs them" mentality.

It's locked, so no more discussion. What little discussion is there is lazy and uninformed, they don't even seem to have read the article for the most part, and there's an overall "the reporting is biased because we only have the view of the 'CFS lobby' while the hospital is gagged from speaking", even though this is literally about an inquest where the MDs involved are speaking to that. I guess no one noticed.

It never ceases to amaze me how in a profession that involves so much attention to minute details, this attention to details is so often completely turned off about things that "aren't on the exam".

There's also a downvoted question at the bottom wondering whether there is an increase in ME/CFS cases because of COVID, if anyone's wondering whether they have clued in about it. They have not, not even close. This is completely embarrassing.

 

Dr Warren says Dr Roy was concerned about aspiration with NG, hence deferral.
NG trial failed.



Sean O’Neill is now questioning Dr Warren

 

Sean O’Neill asks if Dr W thinks ME is psychological
Dr Warren doesn’t know the cause of ME
He doesn’t recall the tone of so-called “heated discussions in meetings” with Dr Shenton

 

Managing Covid-19 is a very different issue, chiefly involving acute respiratory failure.

 

I was being facetious!

 

Sarah Boothby asking Dr Warren what Maeve’s daily calorie intake was. He doesn’t know. Not the first time she has asked this question, no difinitive answer from the Drs.
Sarah highlighted that at times it was 200 calories per day, did that concern DrWarren?

 

***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.

 

Listening live ... I hear that the nurses were updating her records regarding calorie intake. Then it was reviewed by the Dietian. Dr Warren only was reporting 'hear-say' in his evidence at least on parts. He only read the reports from the Dietian.

Dr Warren wasn't seeing the NG feeding, carrying out the NG feeding or following what her calorie intake personally. It was he said, a unique case for him. He did seem to be oddly incurious in many ways.

He stated that Maeve was getting x amount of calories over a number of days. This was an average/mean over the days?

Maeve's mother also recorded her calorie intake but I think I heard this was much less (I.e. 700 vs 15/1700 calories).

Dr Warren was also not interested on her fluid intake as he said her blood kidney tests (when they did them) were fine.

Dr Warren seems to think that there was an improvement and 'upwards trajectory' which is at odds to what was happening.

( as an aside I have been also listening to the PO Inquiry. Struck by some similarities)

 

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.

 

Personally I can’t hack the whataboutery and prejudice on these Reddit threads. One interesting thing is that there’s a fixed “idea” of who we are, you just know when you meet them they’ll be <insert insults> oh but it does exist maybe in some people, but not in the ones I meet.