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

Miller using the standard misrepresentation, not admitting that the narrative that he favours has been the dominant one for decades and has resulted in tragedies such as this one. He is part of the problem.

 

If he really wants people to 'put aside polarising narratives' and engage in productive conversations, I'd suggest that a positive first step would be for him to stop employing the glaringly obvious strawmen and false equivalences which make it very clear that he's engaged in a spin operation.

 

Based on anecdotes and opinion, about the people that engaged with the clinic in the first place and continue to engage with the clinic long enough to form an opinion about their long term recovery.

 

I am absolutely fuming about Miller's piece. Shame on the Guardian for allowing him to use Maeve's death to spread his gaslighting double talk bullshit.

This is exactly the kind of nonsense that my doctors used to spin my head around, it is precisely the kind of nonsense that led to the doctors treating Maeve the way they did, and it is absolutely inappropriate for him to be platformed at this time. Or at all, to be honest.

I recall him writing a similar nonsense column after the NICE guidelines a few years back.

And the gall to say 'after years of well funded research'. Just a bald faced lie. Writing an article about someone's death that repeats the lies that got them killed. Honestly, I hope one day there is a broader inquiry and people like him have to answer for their disgraceful disingenuous actions.

 

Thank goodness for The Times, laying it all out. Actually crying reading this, even though it’s all strangely familiar.
https://archive.is/20240727060407/h...rrible-illness-that-divides-doctors-9mkzk7rxx

 

The proponents of these ideas are unable to question them even after causing the death of a person. This shows that patients need legal protection from the psychosomatic ideology.

 

I couldn't agree more. I am not a legal minded person but doctors need to face professional consequences for psychologising ME and other chronic illnesses. And legal consequences for causing deterioration or death as a consequence of that psychologisation.

 

It appears from Xitter that the Miller article is in The Observer, which is the Guardian’s sister paper on Sundays (different journalists and editors but they share the Guardian website).

 

Yep. Nothing will change unless they are exposed to personal legal liability. As long as they can continue to blame complex systems and other nebulous issues like lack of guidelines or training, they will continue to behave with impunity towards us.

 

I know we’re not allowed to discuss politics but Miller’s comment that “We need a new conversation about ME/CFS. One that puts aside polarising narratives…” reminded me of Donald Trump’s call for unity in the wake of his attempted assassination.

NB I make no comment on whether or not Trump is a suitable person to be president of the US. I was just struck by the parallels and hope this comment will be permitted!

 

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

 

Grin over on twitter alleges that outcomes are getting worse because of the belief that ME/CFS is a biological disease rather than a functional disorder. Complete inversion of reality. NHS staff almost all adhere to the psychosomatic ideology and we can see that the geniuses involved in this case were still trying to adhere to gradual desensitisation principles of treatment for phobias, like implying she should try to sit up a bit more or swallow a bit more, until literally the bitter end.

 

Amazing and heartbreaking book.

I await the ME version with utter sadness and horror that nothing was learned. Not a damn thing. Well, not by the medical community, at least.

 

Complete bald faced lie. No one has ever used CBT to relieve symptoms of cancer or RA. CBT is used to treat comorbid anxiety and depression in those populations.

 

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

 

I feel deeply for them both. Though having endured not only Maeve’s death and the years of abysmal medical neglect by the NHS leading up to that but also the (publicly discussed) aftermath, I trust that they are resilient enough to withstand another attack by BPS advocates that they likely knew would be coming. Albeit maybe not so early into the inquest.

Edit: I’m not sure if Miller’s piece will have any impact, but at least his objective errors and attitude which is reflective of the medical community’s stance on ME/CFS are on the record for when we will look retrospectively on this situation when the understanding of the illness will have been progressed in a couple of decades. Not that there isn’t enough material already, but commenting on someone’s death so inappropriately is particularly striking.

 

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?”