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

I thought this was pretty interesting to see while I was there. I might even have mentioned it in a post or tweet? I can't remember. But there was no reflexive quoting of "the other side" here. Maeve's condition was taken seriously and those who doubted that (ie consultants, etc) were portrayed in a negative lights. Definitely seemed like a difference. Likely due in some part (but not all) to both direct and indirect impact of Sean's position--direct because that's how his colleagues at The Times would cover it, and indirect because of his general credentialed status and, related to that, his perceived credibility.

 

I worry that it's partly due to the BPS lobby understanding that severe/very severe ME/CFS isn't their territory. That they might think it can be hatched off as a different condition, and argue that all the crap is still fine for people with milder illness.

But it might just have been that they knew it would look obscene in the circumstances.

 

I am not arguing about the contribution of the importance of Sean’s professional good standing and influence as a journalist, but for me the star witness in these proceedings is M herself. She clearly showed she was a fully competent person who understood her predicament and demonstrated that she was ill not through her own choice but because of biological processes over which she had no control. She repeatedly asked/pleaded for medical help to keep her alive and found that no effective medical help was made available or forthcoming and she consequently died.

This is the factual story presented at the Inquest and which the Press were bound to report. No BPS alternative story line was presented to the Inquest, for the simple reason that they could not present any evidence to support the BPS alternative psychological story line on ME/CFS. They could not show that M was an unreliable witness with regard to how her illness affected her or show that she did not/would not eat through her own choice. They could not assert a different storyline to the Press outside the Inquest without highlighting the fact that they were not/could not present their different storyline as evidence to the coroner at the Inquest.

It is my experience having gone to law against the BPS psychological view of ME/CFS that as soon as the argument between biology and psychology over ME/CFS is taken to law for adjudication in individual cases outside the claustrophobic confines of the Medical Profession, that the only “Expert Medical Opinion’ left standing with any credibility is the one that diagnoses ME/CFS as being an organic biological illness of unknown causation with no universal successful treatments being known. That diagnosis is the one accepted at UK independent legal adjudication and matches the obvious credibility of all the different ME/CFS patients it has been my privilege to meet as an advocate and carer.

It is the BPS Psychological description and treatment of ME/CFS that is without credibility at law (or in science) not the patients' credibility and that is why the Coroner found as fact, ME/CFS is a biological illness and led to M’s death.

The silence from the BPS in these circumstances speaks volumes about their own recognition of lack of credibility in their position regarding ME/CFS.

 

This is my bet, & I hope Maeve's family, and the wider community are bracing for it all to get used once an 'appropriate' amount of time has seen to have passsed. For example:

"We must stop preventing patients from accessing the evidence based therapies that we know help some, and we must ensure early intervention is paramount, in order to avoid such tragedies as the case of poor Maeve Boothby O'Neill, who was ill served by private doctors with the dualistic approach to medicine which leads to either theraputic nihilism or dangerous experimentation with drugs that may do harm. Functional symptoms are real, can be severe, and can be treated. The NICE guideline for chronic fatigue is hindering progress and preventing patients getting the treatment they need".

 

Oh yeah.

 

Yes I was going to say, they dipped their toe in the water. Miller put on his best face, and implored people of opposing beliefs to work together against the common enemy - ME/CFS. What a lovely man. Did I say lovely man? I meant Trojan horse. Turn it away, it’s no gift.

I did see a Reddit debate about his article, some “normal health” person absolutely could not understand what was inflammatory or offensive about his article. He really did a number with it, at surface level it reads well.

 

I'm surprised that in all the coverage no one has mentioned what happened to Sophia Mirza.
https://www.s4me.info/threads/virol...nference-vincent-racaniello.6269/#post-113714

 

I suspect because she’s not seen as a similar case.

 

I will qualify that by saying she didn’t starve or dehydrate whilst asking for food.

We, of course, can see many similarities.

 

she is one of the few who have ME (CFS) on her death certificate. From memory, officially it was kidney failure due to CFS.
But it very much shows the institutional mistreatment of pw severe ME, and highlights the point of ME being treated as a psychological illness (being forcibly removed from her home with a psychiatrist controlling the events).

 

Sophia Mirza's Brighton GP instigated the sectioning. The GP went from psychiatrist to psychiatrist until she found one willing to section Sophia. The first 2 psychiatrists said No (to their credit), as far as I remember. The GP also tried to persuade the psychiatrist to section Sophia's mother and carer Criona. The psychiatrist said No.


All the documents relating to the sectioning of Sophia, medical records, letters between GP and psychiatrist, social services correspondence, Sophia's mother's complaint to the GMC, etc are all online on the site 'Sophia and ME'

The documents are on the right.

Sophia and M.E.
http://www.sophiaandme.org.uk/


.

 

If Sophia Mirza died of renal failure that would be most likely due to not getting enough food and drink. ME or CFS would not bring about kidney failure otherwise as far as is known.
There may have been an infection but infection is a very common terminal event in people who are starved.

 

"The extensive post mortem showed up no cause of death. We requested an independent neuropathologist to research Sophia's spine. The findings confirmed that it contained massive infection. At the inquest the Coroner confirmed that "She died as a result of acute renal failure arising from the effects of chronic fatigue syndrome (CFS)"/ M.E."

Sophia and M.E. (sophiaandme.org.uk)

eta:

SOPHIA & M.E. HER STORY (sophiaandme.org.uk)

 

That isn't really possible to interpret. There is no indication what sort of infection there might have been. Massive infection of the spine doesn't make a lot of sense. The 'effects' of chronic fatigue syndrome include being unable to eat and drink unaided and infection consequent on starvation but not much else.

The situation sounds fairly close to that of Maeve B other than that starvation occurred in hospital.

The message I get from these cases is that the real problem is that patients are being routed to psychiatric care when there is no psychiatric care to be given. There is no tested psychiatric treatment for ME/CFS (or CFS) in this situation. If patients go into psychiatric units and are cared for and fed then at least they are likely to survive.

 

I think there may have been a bit of a layperson's misunderstanding here with "massive infection of the spine". The neuropathologist's actual report on the Sophia and ME site stated that there was a dorsal root ganglionitis. I don't want to speculate too much but reactivation of varicella zoster near the end of life might have resulted in this.

 

But at what cost? New or additional memories of coercive or even abusive treatment, more than likely the imposition of unevidenced theories as though they were factual; perhaps a refusal to accommodate sensory or other problems due to the stimulus-challenge ideology, perhaps attempts to replace the ME/CFS diagnosis with one more amenable to the psychiatrists. If a pwME is admitted to an acute psychiatric ward that will be very distressing indeed no matter how mildly affected they are. Not to mention potential worsening of the ME or a possibly irremediable loss of trust between the pwME and their GP, hospital, or the medical profession in general for suggesting (or imposing) it.

We need a place outside the existing paradigm; a place where pwME will be cared for safely and compassionately.

 

We probably need more than anything a humane place where people with chronic illness of any sort can be cared for on the understanding that they are not being subjected to bogus therapeutic paradigms.

My wife had experience of two psychiatric units. One was likely to make anyone worse whatever was wrong with them. The other was a quiet airy place, hidden away, with staff who were committed to being genuinely caring. It wasn't perfect but I found nothing to complain about.

Psychiatric patients would benefit from being in units with non-psychiatric patients, with both psychiatric and medical care on tap.

The point I am trying to make is that it sounds as if Sophia Mirza died from neglect, of a sort that could occur on any long stay ward. The question that is uppermost in my mind is what the psychiatrists thought they were doing to treat her. There is no known treatment other than general care, so what was going on?

 

Unfortunately, psychiatric nurses are trained in the concept of behavioural activation which in practice results in loud, chaotic wards with nurses barging into patient rooms yapping very loudly about nonsense and encouraging the patient to chat and do things. For anyone with sensory issues, not just ME/CFS but also just introversion, neurodivergence etc., this is literal hell.

 

As I say, it doesn’t seem similar (on the surface) to Maeve’s story.
And on the surface Maeve’s story is about lack of ME services and knowledge, and that she couldn’t eat, hospital “couldn’t” help so she died.

Its really not coming across to the average person reading the press or seeing the news that the endless dancing and flirting with BSP “could it be mental?” And “she can swallow when she wants to” and “actually it’s her manipulating her mother, not the mother being Munchausen By Proxy” and the reason there’s no services is because Psychiatry jettisoned them with their BSP nonsense. As I said, we can see all of this. I don’t think average people do.