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“Remarkably, the National Institute for Health and Care Excellence (Nice) has indeed rescinded its previous support for these treatments, leaving patients with no evidence-based ways of getting better.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

 

I wondered when the undead would turn in their sarcophagi.
Almost like The Return of the Mummies.
Their international experts even included a black belt scuba diver.

 

I’ve emailed Ilora to bring it to her attention.

 

In this, George Monbiot said (I tried to clean up the YouTube autotranscript so this might not be perfect):

I think this is a problem, that the BPS crowd have glommed onto a really ugly unexamined assumption that's pervasive in our society, and I wonder whether this has been why so many scientists who you think would know better have failed to see the gigantic holes in logic, research methodology and basic humanity that the whole edifice entails. At some level, they want to believe it's true, and so do many of the public.

I think that attitudes can change - we've seen them change on all sorts of things over the years - but perhaps this nasty bigotry needs calling out directly for what it is. Basically, it's 'An illness is only real if I've got it.'

 

Could the 'allostatic load' (yes I had to look that up as well) which is referred to in the letter possibly be due to the decades of abuse we have had to endure from such professionals? just a thought because they don't challenge the NICE Guideline 2021 on that.

ETA NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence | Journal of Neurology, Neurosurgery & Psychiatry

 

I can't bear to look. Turn of the Screw? Or more Transylvanian toothmark stuff?

One thing is for certain, nothing new in twenty years.
Interesting that the Guardian publishes these. All very fair and Polly Toynbee? Maybe the Times has decided to take a firmer editorial position.

I never thought in all my years in medicine that I would see eminent colleagues making such fools of themselves. Dorothy Bishop can get hot and bothered about peer review in distinguished journals but this stuff is just laughable.

 

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

My bold.

When there are any do please let us know.

 

PACE was evidence based, it’s just that the evidence was it’s based on was trash.

 

I’m trying to write a letter to the Guardian. Can anyone help me find a quote? In one of his earlier papers SW wrote something about the role of the doctor/psychiatrist needing to reassure CFS patients to stop them seeking more tests and referrals and encouraging them to move on without losing dignity.

If anyone can find the quote and source this evening I’d be grateful.

[Edit: found. See post below.]

 

Guardian Letter From a 'Part Time Fatigue Psychologist' :

'George Monbiot says ME/CFS is “as physiological as a broken leg”. However, if I repeatedly break my leg due to a penchant for jumping off rooftops, or my exposure to a hazardous working environment, then these psychological and environmental factors are worth considering too. ME/CFS is to a broken leg what the Amazon rainforest is to your local park – it is a vastly complex, multifactorial chronic illness, which remains poorly understood from a medical perspective. As a clinical psychologist who has been working on my own recovery from the condition for nearly five years, I have come to view ME/CFS as existing at the confluence of body and mind. This is not intended to psychologise those of us living with ME/CFS. The symptoms are real, debilitating, and can make life utterly miserable.

However, we humans are psychobiological organisms whose brains and bodies shape themselves to our social environment. People with ME/CFS have often experienced periods of chronic and acute stress in the period before they become unwell. Not uncommonly, they carry the “allostatic load” of adverse childhood experiences, and as a result may have learned to meet the world in adaptive but unsustainable ways – such as being high achievers, perfectionists and self-sacrificers. Eventually, the straw that breaks the camel’s back comes along, typically in the form of a viral infection like Covid or glandular fever. This final stressor shifts the body into a state of dyshomeostasis that appears to become persistent at least partly due to the sensitisation of the central nervous system.

Emerging research is helping us to better understand possible physiological mechanisms of ME/CFS. However, a key question that we have to ask is this: what are the biological, psychological and social factors that create the conditions for this state of imbalance in the entire organism?'
Dr Jake Hollis
Brighton




LINKEDIN:

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



The Guardian persists in it's determination to continue their 'balanced reporting' Bollox by giving space to ME psychosocial supporters, one way or another. Even the ideological ramblings of a 'Part time Fatigue Psychologist' gets featured in The Guardian.

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Dr Jake Hollis in Psychology Today

'Are you living with a chronic health condition, trauma, chronic stress, or burnout? These kinds of difficulties can cause us to feel trapped in vicious cycles of overwhelming emotions, racing thoughts, and deeply unpleasant physical sensations.'

'Are you living with a chronic health condition, trauma, chronic stress, or burnout? These kinds of difficulties can cause us to feel trapped in vicious cycles of overwhelming emotions, racing thoughts, and deeply unpleasant physical sensations. Our lives can get smaller, and we may find ourselves feeling stuck, defeated and broken. By working together to come up with a shared understanding of how you arrived in this scary situation, we can create a plan to reverse this spiral. Over time, we can help your mind and body to move into a healing state, freeing up energy for you to reconnect with what matters most to you.





I specialise in trauma and the mind-body connection. As a Clinical Psychologist with lived experience of ME/CFS, long covid, chronic stress and burnout, I know first hand how debilitating and isolating these difficulties can be. I make use of the latest in neuroscience and evidence-based psychotherapies to help improve people's physical and mental health.'

'During our sessions, we can explore patterns that might be keeping you stuck, such as self-sacrificing, people-pleasing, hyper-responsibility, striving and perfectionism.'


https://www.psychologytoday.com/gb/...is-clinical-psychologist-brighton-eng/1378374

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Jake Hollis specialises in Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, chronic illness and Trauma and PTSD

He charges £120 per Hour

https://www.counselling-directory.org.uk/counsellors/jake-hollis

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Well at least nobody can say we are ranting and raving about an opposition that doesn’t exist eh! It isn’t all in our heads.

 

Is this what you were thinknig of @Robert 1973 ?

4.pdf

 

I’ve found it. It was in this 1989 paper under the sub-heading Beginning treatment:
https://www.simonwessely.com/Downloads/Publications/CFS/4.pdf

 

Snap

 

I know writing letters to newspapers isn’t usually your thing but could I persuade you to submit a letter to the editor which leaves no doubt about the utter nonsense these people are spouting? It would have more impact coming from you.

 

I'm developing a theory. I was out for the count during 2019 - 2021. Does anyone know off the top of their heads when NICE first announced their review of the 2007 Guideline?

ETA don't worry, found it

 

That analogy doesn't strengthen his argument about the 'mind-body connection', it undermines it. But he hasn't noticed because he's too busy lucratively guilt-tripping people.

Like a medium trawling for a receptive audience member. Something's coming through, I'm getting a name... does anyone here know a John? ... James? ... Jane?

 

Wow vastly experienced 3 months part-time!