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

From Putrino on X following @dave30th 's recent piece - a long thread .


https://twitter.com/user/status/1817895583358521724


I try to give everyone the benefit of the doubt and I try to be fairly slow to anger, but jfc I just can’t with these #MECFS- minimizing clowns. Thank you, as always, to @davidtuller1 for taking the time to listen to every argument from would-be clinicians and every gut- 1/

wrenching detail of abuse and dire malpractice (which all too often ends in death) from people with #MECFS and their families. Your body of work is beyond reproach and I can only guess at the toll it takes, but we are so grateful for the work you do. Keeping receipts on this 2/

matter will be crucial as we begin to obliterate the anti-science rhetoric that clings to #MECFS and other infection- and exposure associated chronic illnesses. Cognitive behavioral therapy (CBT), graded exercise therapy (GET) and their cousins/rebrands (e.g Lightning Process, 3/

etc) being shilled as appropriate therapies (or, indeed, “cures”) for #MECFS, #LongCovid and chronic #lyme aren’t hard to understand from a pragmatic standpoint: they’re cheaper than doing real biomedical research, they allow politicians to say “we’re doing something” to 4/

advocacy orgs demanding action, and there is no shortage of “optimizing” of the unscientific handwaving that is called a therapeutic process that can be researched: soaking up a lions share of the meager and unacceptably small amount of federal funds earmarked for these 5/

diseases. As I like to always state: this is not an attack on the field of psychology and psychiatry. Supportive care from these professionals is CRUCIAL for many with #MECFS (though many struggle to access it) and I am privileged to work with exceptional neuropsychologists, 6/

social workers and psychiatrists who are horrified by the behavior of their fringe-dwelling colleagues who have subsumed this space and worked under the cover of “darkness” (darkness brought about by the lack of public interest in #mecfs) until now. But today I just can’t 7/

unsee some of the disgusting comments being made by “clinicians” and self-styled “researchers” that claim to treat #MECFS and “functional disorders” as they react to Maeve’s inquest in the UK. Let me say unambiguously: if you’re out there blaming biomedical researchers who are 8/

attempting to understand the biological nature of #MECFS for the deaths of patients who have been abused by clinical protocols that you established and proliferated, that you taught in conferences about “malingering” and “conversion disorder”. If you’re trying to point the 9/

finger now, because someone with a biological illness had the courage to say “no” to your unscientific grift, the utter audacity to even hint that “had they only accepted *your* treatment you could have saved them? Well, then I have news: from an ethical standpoint you are 10/

no different from a member of the Westboro Baptist Church protesting a funeral. Absolutely despicable behavior and although you have no shame yourselves, your professional societies and licensure boards should be ashamed of you. Anyway, now I need to start my week with this 11/

rage burning so I’ll sign off by once again thanking @davidtuller1 for his tireless work. To Maeve’s family: I do not know you or Maeve, but my heart goes out. I am sorry for what you are going through and what you must endure in the name of justice. We’re with you. /end

 

Wow, I had no idea there were official rules in Britain as to what's a town and what's a city and, I guess, what's a village or a hamlet. Or that a cathedral meant, by definition, "city." Same with a university? In the US, having either has zilch to do with what it is formally called in terms of city, town, village or whatever. We have no such formal classifications, as far as I know--at least in how we talk. We just call things by the terms which feel right to us. San Francisco has 800,000+ residents--a city to most, but to someone from NY it's a big town. And I can call it that with no pushback!!!

I speak American English, in which the expression "university town" is very common and often used for small-ish cities with a major university. Berkeley has 124,000 residents, but no one would blink at calling it a "university town." Cambridge, Massachusetts, which is the home of Harvard and MIT, has a population of 118,000--again, easy to call it a "university town." Boston has many, many colleges, and it's obviously a city--but no one would be surprised to hear it called a "college town."

Washington, DC, is clearly a city, but in shorthand all the politicians call it "this town."

So in my American vernacular, calling Exeter a university town is 100% accurate--which is my standard for whether I need to make a correction. In Brit English, obviously, it's an error. So perhaps warrants a clarification or "note of interest."

I ran into a similar issue when I mentioned in an article the association of doctors with ME. I referred to it as a lobbying group or an interest group--can't remember now exactly--and the group contacted me and said that was an error and they were a professional association. I explained that from the American perspective, all professional associations are interest and/or lobbying groups that represent the interests of their members. The American Medical Association is clearly an interest or lobbying group. I changed the wording to satisfy them only because it wasn't an error--if I'd had to mark it as an error that was corrected, I wouldn't have changed it. (This was a piece in Coda, not my blog--so they would have insisted on a formal correction if it had to be "corrected." Since it was only a linguistic difference and not an error in American English, they didn't mind changing it without having to post a formal correction.

 

No holding back here by Putrino.

Thanks to @dave30th too. No holding back either. And even without F's. I knew you could do without those, even more powerful!
Miller, Stone and other BPS people can't show their faces and articles after your blog. They will try for a while, but you are really putting the spotlight on their bad research (again).
Thanks again. For Meave, Millie, Carla and me.

 

Inquest has resumed. They are proposing to ask Dr Shenton (Maeve's GP) more questions about dates etc. Coroner mentions that at no point has anyone suggested that Maeve lacked capacity. Apparently Tori Riches is not coming this afternoon. Confirmation that Friday will be the last day of evidence. Apparently witnesses for tomorrow will be Dr Fox (?) and Beth Thompson (sp?) the dietician team lead at the RD&E.

This morning's evidence is about to begin with the evidence of Stephen Blackburn (sp?), a community dietician from RD&E who has just affirmed and his giving his background.

 

City status used to be designated by royal charter, although anywhere with a cathedral was automatically a city. Some modern English cities are tiny by today's standards, but they have cathedrals because they were notable places hundreds of years ago.

Now, towns can bid for city status. It's done via a government process, though I'm not really clear how decisions are made. I think the monarch still issues the letters patent that grant city status.

 

Looks like there’s a lot of detail being given in evidence about feeding, and the community dietetics team. Not up to going through it today, so just bringing one important update.

Coroner says she’ll give interim decision on Friday week, 9 Aug 24

 

The inquest has just taken a 10-minute break after Blackburn's (sp?) main testimony; Maeve's parents are now being given the opportunity to question him.

I'm once again taking notes and, although I don't have the energy for a point-by-point, if there is interest I'll try and produce a summary of the most salient points for each witness of the day a little later today, again concentrating on the specifics of what we can learn, the things that most journalists will likely ignore: the different nutritional drinks, the policies and procedures of community dietetics with NG feeding, etc.

One particular point I'd just note now is that he testified that he believes the Leeds inpatient centre "apparently doesn't exist any more" (he had had a previous patient with severe ME who had been admitted there).

ETA - He had also suggested that because "placements" for ME are difficult to obtain then if it was treated as an eating disorder a placement might be "easier to get". There were also discussions including references to "over-medicalisation", DOLS, and a potential referral to a centre in Bath. Will write these parts, among others, up later.

ETA2 - Lunch break. Tori Riches is, now, apparently coming. Inquest will resume with her testimony at 2:15.

 

Lots of detail today, it feels to me like more of a timeline is appearing and we’re getting the gaps filled in, frustratingly it is still a case of Drs seeming to say “well that’s a worry” scratching their head and walking off.

 

As we were leaving for lunch break, I was behind the coroner in the corridor. As she half-looked behind her after going through a door to make sure it wasn't closing on me, I apologized for the coffee incident last week, explained that the witness had said they really needed it, and that I meant no disrespect, etc. She was very gracious--chuckled and said, a couple of times, no problem at all. So now we're BFFs, I think.

 

The Trust Representative asked this question of Dr Blackburn - views on the risks and benefits of PEG should have been explored? At the time, no. With hindsight, might think differently.

 

Thank you @Nightsong. Your contributions are really valuable

 

Tori Richard’s, was Clinical Matron for Gastro now giving evidence. Talking about Lowmon ward (the eating disorder ward) Maeve was sent there as she’d been there before, that was the Bed Mgmt decision, not hers.

 

Re: Maeve’s 3 rd admission, no weight recorded. Coroner asks why food records are incomplete. Tori Richard’s says it’s another nurses role to update.

 

Christine Parker, a Social Worker from DCC is next to give evidence. Mainly focussed on the period Jan-April 21.

 

Sean O’Neill questioning C Parker DCC social worker - there are 9 references to Munchausens, FDI more, coercion and control, more, in the DCC paperwork.
CP says not aware of that.

 

https://twitter.com/user/status/1818303845447213502


"Did you put suspicion before compassion" great q from Sean #MaeveInquest

https://twitter.com/user/status/1818305047517659598


Did anyone catch the number of refs to coercive control,munch.(can't spell soz) etc that Sean found in DCC bundle? #MaeveInquest

https://twitter.com/user/status/1818303509864894887


SON - Munchausen 9 references, FDI more, coercion and control more. This theme runs through DCC documentation did it colour views?

CP - First she has heard of it, can't speak to social care overall.
#MaeveInquest

 

Finished for today, resume at 10am tomorrow with Beth Thompson (possibly nurse?mentioned last week by poss Dr Warren?) and Dr Fox.

I don’t envy @Nightsong taking notes, but thank you so much.
The morning was lots of specifics about food, amounts, nutrients, calories, feeding happening/not happening, happened but wasn’t in notes etc. Followed by passing the buck around (community team does that/doesn’t do that/isn’t commissioned to do that/sometimes does that etc.
The afternoon was social services unable to do things, should have done things, notes say this not that etc.

It’s built a clear picture of how the NHS and Adult Social Care services are broken; disconnected and lacking. In my opinion, anyone who needs anything other than “run of the mill” stroke or similar care can forget it. The system is designed how it’s designed, ME wasn’t considered so ME is never considered. Just follow the usual protocols.

 

I think you are right about Beth Thompson being mentioned by Dr Warren. She was a dietitian and he relied on her reports

https://www.royaldevon.nhs.uk/services/gastroenterology/nutrition/

 

I knew someone kept referring to”Beth does that” thank you.

 

Going back to mentions of Munchausens, FDI and coercive control. It sounds like Sean O’Neill did a word search on the Devon CountyCouncil notes.

One tweeter has said the numbers they heard were

9 times Munchausens by proxy
32 times FDIA [facetious disorder imposed on another aka Munchausens by proxy)
80 something coercive control