George Monbiot on ME/CFS, PACE, BPS and Long Covid

Maat said:
For the record, because it's been a busy day - this was first published online at 17.25 today. It states:

Remarkably, the National Institute for Health and Care Excellence (Nice) has indeed rescinded its previous support for these treatments, leaving patients with no evidence-based ways of getting better.
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My bold.

When there are any do please let us know.
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Just needs the addition of “and NOW no evidence-based ways of being made more disabled”
 
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Maat said:
I think Dr Jake Hollis may be referencing from this:

Socioeconomic Deprivation, Adverse Childhood Experiences and Medical Disorders in Adulthood: Mechanisms and Associations. Morris G, Berk M, Maes M, Carvalho AF, Puri BK. Mol Neurobiol. 2019 Aug;56(8):5866-5890. doi: 10.1007/s12035-019-1498-1. Epub 2019 Jan 26. PMID: 30685844; PMCID: PMC6614134.
Socioeconomic Deprivation, Adverse Childhood Experiences and Medical Disorders in Adulthood: Mechanisms and Associations - PMC
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Interesting. I'm getting a wholly back-and-forth picture which seems to vary hugely depending on the subject

For example on the immigration, human right type front/side of his interests, then this article 'seems' to show an openness to learning (although the points made are specifically in relation to advocacy, narrative, traction, not pathologising or 'making into heroes' when it's the system and the people are just people): Keeping it neutral: conducting research on immigration detention | BPS

I was quite surprised by this, although note it is strongly itself talking about the enlightenment of the influence of another. And it's got some good advice we might find useful on some points made.

And this one. The shaping of moral injury among UK military veterans of the wars in Afghanistan and Iraq - Hollis - 2023 - Psychology and Psychotherapy: Theory, Research and Practice - Wiley Online Library
 
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Sean said:
That was my first thought: Is this coordinated?
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I would assume they got a batch of letters and picked two. That's perfectly standard. I wouldn't make any assumptions about connections between the PACE authors and this guy unless someone knows that there is in fact a connection. That the Guardian published both letters is not in any remote way evidence of that connection.
 
I wrote something with the intent of sending it to the Guardian, but now I'm looking at their Corrections and Complaints I'm not sure where it would fit. It's not precise enough for a letter and I don't think I'd want to expose myself to these people with no organisation for cover. So while I think about it, I'll post it here -

Letter from Professors Peter White, Michael Sharpe and Trudie Chalder
https://www.theguardian.com/society...view-of-illness-doesnt-help-those-with-me-cfs

I suppose the PACE authors, Professors White, Chalder and Sharpe are entitled to right-of-reply to George Monbiot's excellent article -

https://www.theguardian.com/comment...eve-bothby-oneill-me-chronic-fatigue-syndrome
but was it necessary to add a letter expressing the same point of view from a therapist trying to drum up business? I think not, just as it wasn't necessary to publish a piece by Alastair Miller during the Maeve Boothby O'Neill inquest calling for a "compromise", i.e. sticking to the paradigm that led to her death.

As George Monbiot explains in this interview with actor and ME sufferer Jennie Jacques, his article took a long time to write because it involved a lot of research and fact checking -


but the biopsychosocial proponents don't provide any facts, just continue to reiterate that their theories are evidence-based without engaging with the substantial flaws in their work exposed by the NICE Technical Committee, academics and other commentators.

White, Sharpe and Chalder say But this new Nice guidance is contested, being based on a flawed review and interpretation of the evidence, as shown by an analysis by us and 48 other international experts.

This, https://jnnp.bmj.com/content/94/12/1056 wasn't an analysis, just a letter with numerous signatories restating their position. That they haven't withdrawn or revised their flawed work, nor have the journals on whose editorial boards they or their colleagues sit or have sat only underlines the power imbalance revealed in George Monbiot's article. We patients hope the day is coming soon when no publications feel the need to defer to the opinions of flat earthers.
 
tornandfrayed said:
I wrote something with the intent of sending it to the Guardian, but now I'm looking at their Corrections and Complaints I'm not sure where it would fit. It's not precise enough for a letter and I don't think I'd want to expose myself to these people with no organisation for cover. So while I think about it, I'll post it here -

Letter from Professors Peter White, Michael Sharpe and Trudie Chalder
https://www.theguardian.com/society...view-of-illness-doesnt-help-those-with-me-cfs

I suppose the PACE authors, Professors White, Chalder and Sharpe are entitled to right-of-reply to George Monbiot's excellent article -

https://www.theguardian.com/comment...eve-bothby-oneill-me-chronic-fatigue-syndrome
but was it necessary to add a letter expressing the same point of view from a therapist trying to drum up business? I think not, just as it wasn't necessary to publish a piece by Alastair Miller during the Maeve Boothby O'Neill inquest calling for a "compromise", i.e. sticking to the paradigm that led to her death.

As George Monbiot explains in this interview with actor and ME sufferer Jennie Jacques, his article took a long time to write because it involved a lot of research and fact checking -


but the biopsychosocial proponents don't provide any facts, just continue to reiterate that their theories are evidence-based without engaging with the substantial flaws in their work exposed by the NICE Technical Committee, academics and other commentators.

White, Sharpe and Chalder say But this new Nice guidance is contested, being based on a flawed review and interpretation of the evidence, as shown by an analysis by us and 48 other international experts.

This, https://jnnp.bmj.com/content/94/12/1056 wasn't an analysis, just a letter with numerous signatories restating their position. That they haven't withdrawn or revised their flawed work, nor have the journals on whose editorial boards they or their colleagues sit or have sat only underlines the power imbalance revealed in George Monbiot's article. We patients hope the day is coming soon when no publications feel the need to defer to the opinions of flat earthers.
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Really good @tornandfrayed
 
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George Monbiot: "I really hope this isn't about ME/CFS - again. The "silencing" story around this illness has
a. been inflated beyond recognition
b. been used for the past 13 years to protect bad science from effective scrutiny.
https://theguardian.com/commentisfree/2024/oct/18/maeve-bothby-oneill-me-chronic-fatigue-syndrome

Commenting on a post about a forthcoming event:
We are delighted to announce that @deb_cohen,@PaulGarnerWoof, and @hanachronism will be joining our panel next week, 29 Oct, 5:30pm at
@LJMU
! The discussion will explore how scientists and scientific research are being silenced. Register now: https://indexoncensorship.org/events/inconvenient-truths-how-scientists-are-being-silenced-around-the-world/
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tornandfrayed said:
This, https://jnnp.bmj.com/content/94/12/1056 wasn't an analysis, just a letter with numerous signatories restating their position. That they haven't withdrawn or revised their flawed work,
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And this, I think, reveals their lack of good faith. The only significant 'revisions' they have made are to their marketing language, by very slightly toning down the strength of their claim (all diseases have something like all diseases/illnesses have a psychological component), and doubling down on seriously misrepresenting the criticisms and critics of their work (as they have always done).

They have not backed down from nor revised their basic underlying claim and arguments one iota, far as I can see.
tornandfrayed said:
the substantial flaws in their work exposed by the NICE Technical Committee, academics and other commentators.
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You could also cite the reports from the IOM, AHQR (a good one because it calls for the retiring of the Oxford criteria from use), and others, just so they can't say it is just NICE that has 'gone rogue'. Or maybe just refer to those other reports in general as from 'other international institutions', or similar.

No doubt there are one or two more recent reviews in the peer reviewed journals that could be cited too.
Hutan said:
b. been used for the past 13 years to protect bad science from effective scrutiny.
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They have been doing that since day one. One of Wessely's first forays into the field used some dirty sophistry to portray patients as unreliable witnesses and researchers.
 
https://twitter.com/user/status/1849525426671992834




George Monbiot tweets:

'In fact the "silencing" story has been a highly effective form of silencing, shutting down the voices of both patients subject to harmful treatments and scientists challenging the discredited claims still pushed by
@PaulGarnerWoof
et al.
@IndexCensorship
should investigate it.'

And:

'Thanks to this narrative, there's been an almost perfect inversion of victims and perpetrators.'

.
 
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Eleanor said:
Claiming to have been threatened and 'silenced' might also have the effect of discouraging other researchers from going into the field and coming up with data which could make them look very silly (and dishonest).
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I assume it's the main goal. It's been very effective. We see it all the time, in bits and pieces of rumor framing everything, including research proposals. They succeed as long as it's a maligned topic, hence why they stick entirely to politics and maligning.

It's not as if they'd reasonably expect that they'll come up with anything new in the next few decades. They keep doing the same thing in a loop. The whole strategy is flooding the space with bullshit and to block legitimate efforts as long as possible. It doesn't work, but it's effective at preventing real work from happening, and to them that's the same as winning the game. All they need is a stalemate, they win when there is no winner.
 
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