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

I like swearing. I also like an analogy, quote etc. These Drs are putting me in mind of the saying “Nero fiddled whilst Rome burned”

 

The big book about the AIDS epidemic by my former SF Chronicle colleague, the late Randy Shilts, was called "And the Band Played On." Same idea.

 

Yes, as the Titanic sank.

 

Although it’s not entirely true that “nobody had an f-ing clue what to do about it” (a phrase the twitterverse is loving!) in fact both Drs Shenton and Weir knew what to do, but nobody could hear them because they had their fingers in their ears, and were singing “I don’t know anything about ME so I’ll just do what I feel is best”

 

The Guardian:
Maeve Boothby-O’Neill’s harrowing case highlights clashing NHS narratives on ME

by Alastair Miller

"Given this, it was perhaps sadly inevitable that some people would question whether ME/CFS was a “real disease” or was “all in the mind”. Indeed, the original description of ME at the Royal Free hospital in 1955 was attributed to mass hysteria. Some years later, it was disparagingly known as “yuppie flu”. Sadly, it is this conflict between those who think that ME/CFS is a purely psychological condition, with no biomedical basis, and those who believe it is a purely physical condition, with no psychological implications, that has dominated the narrative around this illness.

In mainstream ME/CFS clinics where I’ve worked in the NHS, the conversation is completely different. I know of no colleagues who hold the view that ME/CFS is “all in the mind”. It is just that we currently cannot yet identify a mechanism. Not surprisingly the highly unpleasant and debilitating symptoms are often exacerbated by associated depression and anxiety, and therefore many patients benefit from appropriate psychological interventions such as cognitive behaviour therapy (CBT).

It is also clear to doctors in the field that the individuals who recover best from ME/CFS are those who steer a “middle road” between excess physical activity and excess rest. Patients can’t exercise their way out of the illness but neither will total inactivity deliver recovery. 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”.​

Ehh...

 

Evidence, please?

Evidence, please?

Oh, that's your evidence. Maybe you'd like to do a little reading before assuming an appeal to common sense will work.

 

Repeating that same argument over and over again doesn't make it more reasonable.

1. It doesn't change the evidence on CBT / behavioral interventions for ME/CFS (i.e. they don't work).

[*] BBC Radio 4 Today, 18.082021 (listen again online from 07.53); transript by @Lucibee posted here

2.

 

If I was a betting man I would bet good money that this is based on a counterspin briefing from the "SMC".

It sounds just like Wessely arguing he is the victim of harassment, when debunked for selling snake oil. The SMC has been busy lately too, lobbying for fossil fuel I noticed.

A woman died of ME and mistreatment, not the first by any stretch, because medical attitudes towards ME dont engage with reality. That is why we are having an inquest, to find out what is wrong and what needs to change.

The SMC and people like them would rather blame patients for dying than face their responsibilities. They don't help the open minded inquiry of an inquest but they are exemplars of the kind of ignorance and prejudice which cause the mistreatment of ME patients by doctors.

 

And what, pray, does that quarter truth have to do with someone starving to death?
Having said that there is too much clashing of narrative why keep doing the same thing?

 

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?”

 

Comments are open on that Guardian article.

 

No, as he said: just biased reasoning from his and his friends' "clinical experience"

 

It’s an “opinion” piece but may be worth still emailing the Reader’s Editor about the lack of source re-full recovery. Actually Charles Shepherd might want to do that (like he’s got nothing else to do…/s)

 

Link is to a tweet that shows a screenshot of a tweet by Zachary Grin, that was retweeted by Paul Garner, that claims that inability to eat in ME/CFS is "clearly functional".

Code:

https://x.com/Silas33/status/1817104914922799261

 

Sure, like e.g. severe morning sickness in pregnancy?

Edit: But even if inability to eat was 'functional' -- no reason to let patients die!

 

Alastair Miller:

“We need a new conversation about ME/CFS. One that puts aside polarising narratives, accepts that doctors and researchers are trying to do their best and open up a space for discussion about all possible causes and treatments. This would benefit the patients and could be a positive legacy of this tragic case.”​

As with the doctors who allowed Maeve to starve to death, if Dr Miller has tried his best it would appear that he is incompetent.

How must Sarah and Sean feel seeing a photograph of their daughter accompanying Miller’s dreadful comment article?