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

I think it more likely that the medical and science evidence/opinion given at the Inquest, clearly shows that there was and is no medical explanation or any medical/science evidence to support a psychological attribution to ME. Clearly the medical evidence presented shows the patient is undergoing a degenerative disease process, which the psychological view is unable to describe or ameliorate let alone cure.

 

Oh good. Even better.

 

https://twitter.com/user/status/1822506674583699853



Sarah Boothby, "Coroner determined November 2023 that there are no experts on ME with experience of NHS in England willing. Drs Muirhead, Bansal, Nacul were suggested, had indicated to me they were willing. Only Muirhead was contacted by the court."

 

https://twitter.com/user/status/1822350869171781953


Todd Davenport, "I’d say If you need to put into a guideline that medical teams should do the bare minimum to keep people alive, and without the guideline then providing basic supportive care is somehow debatable, then you’ve got much bigger problems with your humanity that a guideline won’t fix."

 

Trial By Error: Valerie Eliot Smith on the Inquest Findings

https://virology.ws/2024/08/12/trial-by-error-valerie-eliot-smith-on-the-inquest-findings/

 

@swastrosarah
Alice Barrett would have died an identical death under his care had we - the patient carer community - not used an open inquest to persuade BBC to shame RDUH into action."

@swastrosarah
#pwME If you or your #Close2ME have the capacity to sue for medical negligence of #ME, contact Tim Annett at Irwin Mitchell in Shefffield. No win no fee. Tim.Annett@irwinmitchell.com. Please share far and wide.


https://twitter.com/user/status/1822885389301854293


https://twitter.com/user/status/1822912272903061861

 

Yes. We do.

 

What does Sarah say in the quote of her posted by someone else that she then replied to?

Can’t see the end of it.

 

18 deaths in six years from malnutrition in very severe ME? This is even more than I knew of or would have expected. This is crazy.

 

She says the following:

@swastrosarah
1/2 In court, Strin said there is no treatment for OI. In a risk management meeting with social services he said, "there have been 18 deaths due to a form of serious CFS in the last 6 years and Sarah is convinced Maeve will be the 19th person; however 16 of the deaths were due to

@swastrosarah
2/2 malnutrition associated with CFS and he did not think this related to Maeve. […] (Sarah) sees malnutrition in the ward and thinks the same will happen with Maeve." [heard at inquest]

https://twitter.com/user/status/1822881098923196676


https://twitter.com/user/status/1822881286697984248

 

It appears that Strain alleges that death from malnutrition in ME/CFS is much more common than we thought. Unfortunately, he's right about there being no evidence-based treatment for OI in ME/CFS. The information contained in Weir's letters would have been dismissed as quackery by the NHS consultants since it's based on anecdotal evidence.

 

Todd is right of course.

But it looks as if there is something more specific going on - that professional bodies are actively, if covertly, advising against supportive care. That should be fixable. If it isn't, the problem is even bigger than Todd is implying.

 

Thanks.
I can see why they wouldn’t weight Wier’s evidence on treatment highly. They can’t. It’s real shame though because his perspective on how people with ME diagnosis are treated in the NHS would probably also be taken less seriously due to his perspective on treatment, and the how people are treated is something he will base upon much firmer evidence.

 

Yes, exactly. It's a widespread problem in ME/CFS advocacy. Objective facts like patients being mistreated in hospitals or CBT/GET being ineffective are often paired with dubious claims about causation and treatment. We see this all the time from well-meaning doctors who advocate for us on social media, as well as patient orgs. Unfortunately, making baseless claims ends up discrediting everything you're saying, including the good bits.

 

Could you explain what you mean by the last sentence here @Jonathan Edwards?

 

I think he means that professional bodies advising against supportive care in the misguided but well intentioned view that this would be best for patients is fixable.

If these bodies can't accept that there's no evidence this helps patients, or if there is no intention to do what's best for patients, then it's a huge problem.

 

I suspect the expert witness needed is a gastroenterologist, not an ME expert.

Dr Roy seemed, from quotes, absolutely certain of several things. Aspiration would cause death. Any tube other than NG would case sepsis, which would cause immediate death. Not using a functioning gut would cause atrophy which may not be reversible. High nursing burden. Lack of sterile environment.

 

Thanks!

Though I’m pretty sure we don’t have evidence to back the ‘well intended’ part or certainly not if it’s about intentions towards pwME.

Maybe they think getting rid of us would help them give their time to others who I can imagine they might feel genuinely need help as opposed to us. So maybe well intentioned to someone, just not to us.

Or to themselves if they feel self care is having nothing to do with us. For the benefit of their mental health. Mental health is important .

 

This view that providing medical care for functional disorders will make them worse, what is it based on? What is the diagnostic test that allows accurately identifying these patients (if they exist?)

Bob said he became the number one enemy in the hospital for no apparent reason. I think this was calculated mistreatment to make sure he derived no "secondary gains" from what the hospital thought was not a real illness. I've seen an old definition of conversion disorder as unintentionally, subconsciously feigned illness to gain "secondary gains". I suspect this is roughly how ME/CFS is viewed in this context.

Even if some patients might enjoy the attention given to them because they have no other human interactions, or no one that acts with empathy with respect to their illness, doesn't make their illness psychosomatic.

It sounds more like medical mythology that persists because it's too hard and embarassing to admit it was wrong and change things to the better.

 

I wonder what the threshold is that will change their minds. Is it a fixed number of death certificates?