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

He needs CBT

 

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.

 

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

 

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.

 

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

 

Multidisciplinary approach is a codeword for getting psych involved.

 

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

 

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

 

(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:

 

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?

 

@Robert 1973

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

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.

 

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

 

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

 

The anomalous anomalies paper is still available here.

 

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!

 

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