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

[Hutan]

Guardian article

Comments are open on that Guardian article.

I’ve also submitted a comment beneath the article on the guardian website with a link to George’s article. Awaiting approval.

Comments on the Guardian article are now closed, but there are 69 comments. I didn't read them all, but there are excellent comments there. Thanks to everyone who made the effort to set the record straight.

Miller has been beating that particular drum for a long time. That Guardian article is pretty much a copy paste of his 2017 statement here:
(Not a recommendation) Alastair Miller on CFS
where he was upset about the ungrateful CFS patients who weren't appreciating the hard and selfless work of the BPS doctors.

 

[MrMagoo]

Guardian article



Comments on the Guardian article are now closed, but there are 69 comments. I didn't read them all, but there are excellent comments there. Thanks to everyone who made the effort to set the record straight.

Miller has been beating that particular drum for a long time. That Guardian article is pretty much a copy paste of his 2017 statement here:
(Not a recommendation) Alastair Miller on CFS
where he was upset about the ungrateful CFS patients who weren't appreciating the hard and selfless work of the BPS doctors.

He needs CBT

 

[Hutan]

He needs CBT

There does seem to be evidence of 'unhelpful rumination' there.

 

[Sean]

The fact that we use CBT and other behavioural approaches in no way implies that we do not believe this is a physical condition. After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks. Nobody has ever suggested that those conditions are “all in the mind”.

The standard shameless sophistry and lying they have been indulging in since forever.

 

[Sean]

Goal setting, graded eating therapy, all the usual nonsense. These people will just never get it.

Sadly that's sort of what the 2007 NICE guideline recommended at the time, but they should have used their observation and learned rapidly that it makes pwME worse, especially in such a severe situation.

And they have gall to accuse us of being stuck in rigid stereotypical thinking? It is beyond parody.

Re:

I don't know if anyone has mentioned thinking the same thing I did when I saw that, maybe I've missed it, but what struck me was that of course, post-1980s was when CBT/GET started being pushed as so-called 'treatment' for ME; I've read numerous personal anecdotes of later sufferers saying that they were mild-moderate and able to walk and have some function, until after a course of GET resulted in them becoming worsened to the point of needing a wheelchair or becoming bedridden. Can this worsening of level of sickness of ME patients be tied to subjecting them to GET?

Very good question.

So as best as I can tell from the testimonies so far:

Therefore the issue of what they believe is critical to the entire case, as they only behave this way when they feel like they have full dispensation from normal duties and responsibilities, which appears to be the primary function of psychosomatic ideology​

Give or take a few details, this is roughly it. It will happen again, the same way, for the same reasons. It is happening right now elsewhere, for the same reasons. Psychosomatic labels clearly afford total protection from malfeasance, one of many reasons why they are harmful and self-defeating.

It is the perfect excuse mechanism. Nobody can disprove it. Even if a full biological explanation and cure is found they will still claim there is a 'functional overlay', to avoid having to face up to themselves. They are cowards.

I’m hoping next week we find out why the NG wasn’t even attempted until July

I read a report I think it quoted Dr Patel saying about the patient making “irrational choices” I think in the context of wanting to go home. They’re not irrational if you have ME, doc.

Exactly. What they are really saying is that they don't want to face what that appalling choice is and why patients are faced with it.

Starting to change only very recently, non-cardiac chest pain (esp in women) fitted into this category, "helped" by the inevitable and quite understandable anxiety you would observe with the presentation.

It is even worse than that. The health system gives out contradictory messages about stuff like this. Don't delay if you have these symptoms! Go straight to the hospital! Etc.

Even if a particular presentation is due to anxiety, that in no way rules out it being a serious cardio-vascular issue next time.

The system is so broken on this stuff it is difficult to know where to start on rebuild job.

 

[SNT Gatchaman]

I should have put "non-cardiac" chest pain in women in quotes or "so-called" there as of course it's cardiac much of the time.

 

[bobbler]

Let’s all play nicely together!
Now, little Johnny, you promise not to punch little Timmy in the face again? And Timmy, now Johnny has apologised, you promise to be his friend?”

It's literally trying to hijack the narrative with the title he chose now isn't it.

 

[Chestnut tree]

It actually worries me the way the BPS x Insurance/Corporate Wellbeing disease is spreading. The NHS has internalised CBT to the point that I wouldn’t be surprised if it did become the main treatment for Cancer, or brought in on antenatal wards instead of midwives. Surely if women understand that childbirth isn’t painful, they can just deliver with the aid of an unqualified HCA.

For light relief I just googled “That Mitchell and Webb Look: Homeopathic A&E” (UK comedy sketch show)

“I dunno, sometimes I feel like a “statistically negligible amount of arnica” solution…just isn’t enough?”

Sorry to be a Debby Downer but from a money/power standpoint they are so in control because insurers/governments/media seem to be psycho quackery proponents and we have ourselves and ME organization that ar or underfunded or have dubious links to governments/ reseachers who support the psycho quackery. For better outcomes we need to rectify this power imbalance.

 

[Sid]

CBT has been trialed for fatigue in cancer (especially by Dutch BPS leaders including Knoop), MS (Moss-Morris et al) and RA, but at least for RA the results of the LIFT trial published two years ago clearly show that it is ineffective: https://www.s4me.info/threads/cogni...-2022-bachmair-et-al.28302/page-2#post-429209

He was talking about clinical practice not trials. You can find a trial out there for any quackery for cancer including Chinese herbs.

 

[Sid]

But what exactly are 'complex multiple conditions' and why should that require a multidisciplinary approach.

Multidisciplinary approach is a codeword for getting psych involved.

 

[Haveyoutriedyoga]

Multidisciplinary approach is a codeword for getting psych involved.

Not necessarily - depends on who is using it and in what context!

 

[Jonathan Edwards]

Multidisciplinary approach is a codeword for getting psych involved.

I don't think it is even that specific, it just means passing the buck.

 

[Nightsong]

(post has been copied to the Qeios Management of Nutritional Failure, Edwards thread)
From the perspective of another potential paper on this subject I think there are several points raised by the inquest, in addition to the context of the RCP working group document, that might be worth considering (there are undoubtedly more but these are the ones that come immediately to mind; I haven't referred back to my notes and am writing from memory):

a) How early enteral feeding should be considered in the context of ongoing oral intake but when there is diminishing ability to eat / nutritional status seems to be declining (RC guidance was raised in this context against Weir's suggestion of early enteral feeding).

b) Roy's argument regarding disuse atrophy IMHO deserves exploration.

c) It might be useful to explore where Weir's view came from that some of the research performed about the necessity of enteral feeding while elevated was performed in stroke patients with impaired cough & swallow reflexes and so the aspiration risks may not be as significant as generally thought in pwME. Roy was adamant this was not relevant and the only relevant factor was that of gravity but may be useful to explore the research, such that it is, around feeding while elevated.

d) Also, from Warren's testimony, in the context of NG feeding, there was a reference to a trial of an NG being dependent on a minimum angle of 30 degrees but preferably 45 degrees. Not sure where the 30 degree angle comes from but the origins of the 30 and 45 degree values may be useful to explore.

e) The variety of enteral feeds available, and the potential lack of tolerance to particular feeds, deserves consideration. In Maeve's case there was discussion of a feed being trialled by NG that she had not tolerated orally. It may be worth exploring how things work in the NHS context - e.g. whether there are a limited number of commercial feeds available.

With regard to PN it may also be worth addressing the arguments in the Lal et al (neurogastro) paper, particularly this paragraph and its imputations:

Hypermobility Disorder/hypermobile Ehlers Danlos Syndrome (HD/hEDS) is an emerging condition for which there are increasing referrals for PN.20 DGBIs, especially functional dyspepsia and irri- table bowel syndrome are strongly associated with HD/hEDS.21,22 There is a large overlap with fibromyalgia and chronic fatigue/myal- gic encephalomyelitis (ME) with a core feature of chronic pain due to both peripheral and central sensitisation, overlapping with anxiety and a dysregulated autonomic nervous system including postural orthostatic tachycardia syndrome (POTS). As there is also no estab- lished evidence that patients with HD/hEDS have small intestinal malabsorptive failure, PN should be avoided other than again in life threatening extremis as a temporary bridge to pain management and rehabilitative MDT therapies.23 This may be particularly important since anecdotal clinical experience suggests that HPN-related CRBSI are more frequent in this patient cohort.

 

[Robert 1973]

I’m considering writing a letter to the Observer in response to Miller’s article. Remembering that he was a signatory to the JNNP “anomalies” article criticising the NICE guideline, I tried to look up the rebuttal from Barry et al. It seems that both the anomalies article and the rebuttal have been put behind a paywall: https://jnnp.bmj.com/content/95/7/671

Is that something others were aware of? Does anyone have free access links?

 

[MSEsperanza]

@Robert 1973

Thank you for considering writing a comment on Miler's Observer/Guardian piece.

I tried to look up the rebuttal from Barry et al. It seems that both the anomalies article and the rebuttal have been put behind a paywall: https://jnnp.bmj.com/content/95/7/671

Is that something others were aware of? Does anyone have free access links?

Interesting. I probably last checked in May or June when both were still open access. Did you save the articles before? If not, I hope someone will share them with you.

 

[V.R.T.]

Letter to observer - which draft is better im undecided? Not sure if my paragraph on Nice and the low quality research is 100% accurate. Can anyone advise?

I intend to fire one off this afternoon after a decent rest

 

[Robert 1973]

@Robert 1973Did you save the articles before? If not, I hope someone will share them with you.

I didn’t but someone has now kindly sent me the PDFs. Thank you.

 

[dave30th]

It seems that both the anomalies article and the rebuttal have been put behind a paywall:

The anomalous anomalies paper is still available here.

 

[MrMagoo]

This guardian article refers to the Nice review ctte “low or very low quality”
https://www.theguardian.com/society/2021/oct/29/health-watchdog-nice-publishes-delayed-me-guidance
It might be fun to include a Guardian link as your source.

This article also refers to the delay in August of publishing the updated NiCE guideline, eventually published in October after Maeve had died.

Also the letter is great!

 

[MSEsperanza]

I didn’t but someone has now kindly sent me the PDFs.

The anomalous anomalies paper is still available here.

Not sure if that needs a registration at research gate?

If so, for citation you could instead use the gift link to the PDF on bmj provided here -- still working at the time of posting:

Edit to add:
Free link posted here to the full paper provided on Twitter by Paul Glasziou
https://t.co/LgEphp9UxR

Edit: It would of course to be good to have a gift link to the rebuttal too.