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

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”
 
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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...
 
the highly unpleasant and debilitating symptoms are often exacerbated by associated depression and anxiety
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Evidence, please?

many patients benefit from appropriate psychological interventions such as cognitive behaviour therapy (CBT)
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Evidence, please?

After all, we use CBT and rehabilitation to relieve symptoms in cancer, in rheumatoid arthritis and following heart attacks.
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Oh, that's your evidence. Maybe you'd like to do a little reading before assuming an appeal to common sense will work.

:banghead:
 
Alastair Miller said said:
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”.
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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).
"the fact that most clinicians would support the use of CBT for CFS/ME does not in any way imply that we feel it is a psychological illness.

The reality is that CBT helps symptoms, it helps symptoms in people with cancer, it helps symptoms in people with rheumatoid arthritis, and CFS/ME is very much a “symptomatic” condition – if you don’t have the symptoms, you don’t have the condition. And if CBT can help the symptoms, and there are lots of trials to show that it can, then it can obviously improve the situation."
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[*] BBC Radio 4 Today, 18.082021 (listen again online from 07.53); transript by @Lucibee posted here

2.
MSEsperanza said:
To refute desperate arguments like this one from Alastair Miller [*] :
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2) How can it be explained that systematic reviews on the benefits of similar treatments for fatigue associated with other illnesses suggest they are effective?
[...]
Even though the simplest answer on question 2) seems to be that ME/CFS is a distinct illness and there is no evidence that fatigue e.g. in MS, RA or Cancer is similar to symptoms experienced by pwME -- maybe there is something that could be learned from the update on this NICE guideline about the difficulties of assessing the evidence delivered by clinical trials on non-pharmacological treatments in general.
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Joan Crawford said:
Wildly inaccurate article in Pulse.

Not my impression at all of the press articles.

Seems overly defensive.
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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.
 
Wyva said:
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...
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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?”
 
That article by Alastair Miller is inaccurate, deeply inappropriate in these circumstances and insulting to pwME. He should be ashamed of himself.

However, with appropriate support and intervention many patients will make a full recovery. A rough rule of thumb from clinical experience is that about one-third of patients will make a full recovery, one-third a partial recovery and one-third will remain at baseline or deteriorate.
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There is NO evidence to support this.
 
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
 
Andy said:
claims that inability to eat in ME/CFS is "clearly functional".
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Sure, like e.g. severe morning sickness in pregnancy?


Andy said:
Extreme morning sickness? Scientists finally pinpoint a possible cause

"Researchers have pinpointed a hormone released by growing fetuses that might cause a debilitating form of morning sickness. Women who are more sensitive to the hormone, which increases during early pregnancy, might be at greater risk of experiencing a severe form of nausea and vomiting, called hyperemesis gravidarum, according to their study.

“For the first time, hyperemesis gravidarum could be addressed at the root cause, rather than merely alleviating its symptoms,” says Tito Borner, a physiologist at the University of Pennsylvania. The work was published on 13 December in Nature1.

The finding could also open avenues for treatment. “We now have a clear view of what may cause this problem and a route for both treatment and prevention,” says study co-author Stephen O’Rahilly, a metabolism researcher at the University of Cambridge, UK."

https://www.nature.com/articles/d41586-023-03982-8
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Edit: But even if inability to eat was 'functional' -- no reason to let patients die!
 
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I hope Alsistair Millars piece prompts a response from regular Guardian opinion commentators Frances Ryan and @George Monbiot

of course Millar was mentioned as a possible “expert witness” at the first pre hearing. Obviously he’s unlikely to be happy about missing out on an opportunity to spout his ridiculous belief s and miffed that Dr Strain AFME current medical adviser doesn’t subscribe to the psychosomatic thinking
 
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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?
 
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