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

I hope Ilora Finlay and Peter Barry may respond.

Sharpe et al write:

“Remarkably, the National Institute for Health and Care Excellence (Nice) has indeed rescinded its previous support for these treatments, leaving patients with no evidence-based ways of getting better.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

It’s frustrating that their JNNP “analysis” has no link to the response from Barry et al (which is also behind a paywall).

I’m so sick of this.
That's why they chose to publish this in the form of a letter. Those aren't fact-checked, are not reporting. And the letter links to a commentary published in what is basically their own pet journal.

Also someone noted that the other psychologist who wrote a letter has a private therapy consulting business for "CFS". So literally everyone who signed their name here has a vested financial conflict of interest in it, will stand to lose a lot of money and reputation. Hence why they can only publish in the form of comments and letters, at least unless they can find some editor willing to not care about fact-checking, like with the Reuters hit piece on David Tuller.
 
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I think the Dr Jake Hollis one is worse in a way, as he repeats as fact the unevidenced stuff about stress, adverse childhood experiences, perfectionism etc.
His argument is weak and absurd but what's most notable is that he speaks of struggling for 5 years on his 'recovery" when the rehabilitation model is usually in trials as a few days of intervention, maybe a few weeks or months. The idea of doing years of this is ridiculous. It 95%+ of cases it simply takes the form of "just exercise, bit more each week" and that's it.

So it basically seems like he is in remission just enough to profit from it. The loud activists almost always directly profit from it. Funny how that works.
 
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PACE was evidence based, it’s just that the evidence was it’s based on was trash.
It's also evidence that this model doesn't work, but when you can turn a loss into a profit using a single minus sign, then it's all good. It's just not said enough that the accounting equivalent of what the quacks do is literally considered fraud in almost all cases. And not just fraud but "you're going to prison for a while" fraud.
 
Dr Jake Hollis

Clinical Psychologist

The Fatigue Psychologist · Part-time Jul 2024 - Present ·

Chartered Clinical Psychologist specialising in ME/CFS, Long Covid, Fibromyalgia & Burnout

https://www.linkedin.com/in/jake-hollis-67471097/?original_referer=https://www.google.co.uk/&originalSubdomain=uk
Ah so he just started his business and is basically using this as a disguised advertorial. Smart. Well, petty scammer smart but still, smart. As long as you don't have much of a conscience anyway.
 
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This. We have all seen how shameless and ruthless they are. The closer they get to losing their empires, reputations, status, incomes, etc, the more so they will become.
I don't know. Much of this started with claims of death threats, mail bombs, comparing us to terrorists, Wessely saying he felt safer on the ground during the Iraq war (he obviously never left the safe fortified compounds but whatever) than with us and so on. If anything, they've toned it down quite a bit from that high point, now it's mostly just accusations of trolling and dualism. Well it went from terrorists and bomb threats down to harassment down to trolling and now I guess we're just confused dualists. Oh, wait, and we're anti-recovery activists. Or something.

Likely because of the PACE trial data tribunal where they had to admit that there is no evidence of this besides angry letters, and they had to be very unconvincing for them to not bother presenting them when it mattered. When someone makes accusations in a public forum but declines to produce evidence in a tribunal setting, you know they're full of shit.
 
I'd be wary of a UK ME/CFS public enquiry while the likes of Wessely, Sharpe, White, Chalder, Moss-Morris et al are still influential. The desire for 'balance' can scupper deep understanding of the problem, and eminence over-ride evidence.
I would like to see them questioned in the same way Jason Beer KC is examining evidence in the current Post Office Inquiry. He is asking pertinent questions and seems well prepared.
 
Not so sure after listening to my old music teacher who survived a Japanese death pit with a smashed femur.
I suspect Japanese soldiers were a bit like Bart's men.

Peter Denton White was almost but not quite a Barts man, being at QMC.

It was said that;

You can always tell a Barts man.
But you can never tell him anything.

Oxford men you probably wouldn't even bother to try.
 
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Not so sure after listening to my old music teacher who survived a Japanese death pit with a smashed femur.
I suspect Japanese soldiers were a bit like Bart's men.

Peter Denton White was almost but not quite a Barts man, being at QMC.

It was said that;

You can always tell a Bart man.
But you can never tell him anything.

Oxford men you probably wouldn't even bother to try.
I saw Prof White at Barts 2007
 
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

One concept invoked to explain these observations at least in part is the phenomenon of psychological resilience. Readers interested in an examination of the evidence for and against this explanation are invited to consult recent papers by [11, 12]. Another heuristic invoked in an attempt to explain this central question is the concept of allostatic load and the failure of adaptive mechanisms (allostasis) leading to allostatic overload and the subsequent development of pathology in adulthood or adolescence [13]. Over a lifetime, allostasis and allostatic loads (or pathophysiology) epigenetically affect both central and peripheral processes: stressful phenomena, including environmental stressors, major life events, abuse and trauma, can affect the development of stress susceptibility and lead to epigenetic changes in central neural circuitry and functioning; in turn, this can feed into perceived stress, in terms of vigilance and helplessness [13]. This, in turn, is associated with behavioural and physiological responses which mediate allostasis, leading to adaptation; as a result of, for example, repeated stress or dysregulated stress responses (that is, allostatic load), it has been argued that this can lead to pathophysiology [13].
 
This. We have all seen how shameless and ruthless they are. The closer they get to losing their empires, reputations, status, incomes, etc, the more so they will become.

It is difficult to start dealing with a thing until it is named, until it is made overt.

And worse.

–––––––––


And why is there a lack evidence-based treatments, Prof.?
I watched the channel 4 programme on undercover:exposing the far right

They were looking into an organisation that had two arms: research and marketing

the research was race-based and that company was basically getting sponsors funding it to do research that backed up derogatory ‘differences’

worth a watch and yes as I was watching it I was thinking we just need a name for this Sharoe style mission to label all ill people as hysterical needing re education and … goodness knows how far such ideas go. Then selling it

it’s certainly a playbook
 
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
Gotta love how they hedge round ever suggesting anything that would reduce or provide actual support to allow someone the window to reduce allostatic load

it’s like don’t mention the elephant in the room : the loads bigger fir them and they do worse so it must be somehow to do with them , they just need more load-resilience BUT it can only be delivered by pep talks and psych labels ??
 
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

Considering the rest of things Dr Jake Hollis says I strongly doubt he's much concerned with the literature and more likely just saying what he believes or heard someone say somewhat. Certainly for his business to be profitable he has to say those things on which he builds his business on and that is "It is very common that people who become unwell with ME/CFS, Long Covid and Fibromyalgia have been carrying unsustainable amounts of stress in their lives during the weeks, months or even years before they become unwell. It is also common for people not to realise this until their body makes it impossible to ignore. Many people find that their symptoms start after a viral infection like covid or glandular fever (a.k.a. mononucleosis). It is important to remember that viruses are also forms of stress on the body. For people whose bodies are already depleted due to other stressors in their lives, a viral infection might act as the straw that breaks the camel's back.

The immune system may struggle to function as it should, and this may lead to chronic inflammation. In turn, this may influence heart rate, breathing, gastrointestinal functioning, circulation, metabolism and oxygen levels. This might help explain symptoms like fatigue, brain fog, breathlessness and digestion issues."
 
Got a laugh from this one. Thanks! An apt description. I think of them like the Japanese soldiers on obscure islands who haven't realized WWII was long over.
From coverage of a totally unrelated case over in France at the moment there was a powerful point where the lady said “it’s not for us to feel shame it’s for them”

I don’t want to steal or misappropriate but it has made me think on how some types just won’t or can’t do the shame or facing up and run around in all sorts of contradictions to themselves to avoid truth dropping.

and then on the other hand when I first saw this article I thought about how hard I worked , genuinely one of the bigger outputs on teams, all my life. And making sure I did things that needed to be done right and mattered properly even when there was some short cut or get away with leaving it but the impact on someone else would be large etc. and how I’m still a contributor and always was someone who properly helped others whether listening properly or knowing when my favour or help would make the difference like a fork in the road so doing it for others.

and how on the flip side these people have only offered this into the world. A bit of writing propaganda . And it strikes me it’s lazy people seeking cushy numbers that involve dissing and claiming white is black on those who are the workers and doers. And how the health service has people who work so hard doing the real jobs but are increasingly understaffed by the medical equivalents of this siphoning off funding and resources to their kingdoms that make problems worse and research norms less robust.
 
I would like to see them questioned in the same way Jason Beer KC is examining evidence in the current Post Office Inquiry. He is asking pertinent questions and seems well prepared.
Yes he does well at handling certain characters and tactics

your mentioning it has almost inspired me to to do list watching some of these back through to learn a few lessons on the ‘how to handle / approach x’
 
I don't know. Much of this started with claims of death threats, mail bombs, comparing us to terrorists, Wessely saying he felt safer on the ground during the Iraq war (he obviously never left the safe fortified compounds but whatever) than with us and so on. If anything, they've toned it down quite a bit from that high point, now it's mostly just accusations of trolling and dualism. Well it went from terrorists and bomb threats down to harassment down to trolling and now I guess we're just confused dualists. Oh, wait, and we're anti-recovery activists. Or something.

Likely because of the PACE trial data tribunal where they had to admit that there is no evidence of this besides angry letters, and they had to be very unconvincing for them to not bother presenting them when it mattered. When someone makes accusations in a public forum but declines to produce evidence in a tribunal setting, you know they're full of shit.
We really should compile an anthology of these somewhere

because I think there is power in ‘if someone read these all through together’ then it looks quite different as to who’s a bit whatchamacallit

I’ve certainly also read through some papers in the past and to fresh eyes they don’t just whiff of manifesto
 
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