This is remarkable because afaik the early stage research he refers to -that he claims is promising in providing rehabilitation- is CBT, which hinges on the notion that activity avoidance because of discomfort and fear about the consequences of activity is the hub cause of perpetuating disability in ME. CBT then targets that avoidance with behaviour therapy (exposure to the avoided behaviour in order to trigger the effects of Operant Conditioning) while adding cognitive therapy (reframing untrue thoughts that keep the wrong behaviour in place) to support it in order to achieve the desired behaviour change.

It's literally the same CBT formulation they use for anxiety disorders such as agoraphobia with panic attacks. They think nothing is wrong other than the brain learning to associate physical symptoms of anxiety with activity which then leads to avoidance behaviour.
 
It's literally the same CBT formulation they use for anxiety disorders such as agoraphobia with panic attacks. They think nothing is wrong other than the brain learning to associate physical symptoms of anxiety with activity which then leads to avoidance behaviour.
How do they justify very severe cases I mean in the case of people like whitney or merryn crofts etc.

Even just severe people who use bedpans and stuff, its just too much to psychologise. And at that severity you can start to suffer from paralysis and gastroperisis etc.

Like are they really going to claim that my heart rate going from 45 to 160 when I turn around in bed (am bedridden and cant stand up) is due to anxiety or deconditioning (6 months ago I could bike 50km).
 
How do they justify very severe cases I mean in the case of people like whitney or merryn crofts etc.

Even just severe people who use bedpans and stuff, its just too much to psychologise. And at that severity you can start to suffer from paralysis and gastroperisis etc.

People with very severe psychiatric disorders also have an inability to eat/drink or mobilise so it's very easy to dismiss severe ME/CFS as psychiatric because the test results are all "normal".
 
It's literally the same CBT formulation they use for anxiety disorders such as agoraphobia with panic attacks. They think nothing is wrong other than the brain learning to associate physical symptoms of anxiety with activity which then leads to avoidance behaviour.
Exactly. A whole cloaking narrative was spun around it, but they basically want to treat ME like a fear of spiders: an irrational fear that leads to unnecessary (and disability-perpetuating) avoidance. And such things are treated with gradual exposure to the avoided thing accompanied by challenges to unhelpful thoughts that keep the avoidance in place.
 
How do they justify very severe cases I mean in the case of people like whitney or merryn crofts etc.

Even just severe people who use bedpans and stuff, its just too much to psychologise. And at that severity you can start to suffer from paralysis and gastroperisis etc.

Like are they really going to claim that my heart rate going from 45 to 160 when I turn around in bed (am bedridden and cant stand up) is due to anxiety or deconditioning (6 months ago I could bike 50km).

I've seen several ways this is done in older material.

  • Usually the very severe cases are just avoided, like they're not even there.
  • I've seen a CBT pusher transplant his CBT study outcomes in a mild Oxford criteria population (mean Karnofsky scale score of 71) to severe ME by just saying CBT could be applied there as well.
  • I've seen a CBT pusher fix his cognitive dissonance when having to deal with a crashed ME patient IRL by papering over the holes with more malicious ablism and becoming abusive; confronted with a patient hospitalized after they deteriorated under his "care", he told them they subconsciously wanted to fail and stay ill, that they were afraid to get better because of a fear, invented by the CBT pusher, that they would fail their educational degree, and that there was nothing physically wrong with them.
  • I've seen a CBT pusher claim that severe, bedbound patients would be able to play 45 minutes (!) of tennis (!!) several times a week (!!!) and start a new education after 6 months of CBT. (It was my first post on this forum)

They usually ignore it and "rationalize" backwards from their disablism and fill in the gaps with more disablism. Despite all their indignant claims to the contrary, ME is treated like a psychiatric disorder. And, like Sid says above, in practise that means that severely ill patients risk being treated like having a really bad case of that psychiatric disorder, warranting referral to a psychiatric ward for an extra strong dose of "correction", at times even without their consent being needed (sectioning).
I've been there myself, and it's an indescribably surreal and terrifying experience to be so horribly and frighteningly sick and the people you and your family are begging for help refer you to the psychiatry ward where they treat you like it's just a matter of how focused you are on your symptoms and all will be well if they take away any aids and force you to act like you're healthy.
It's not a fun read, so it's ok to skip it.

In short the academic CBT pushers ignore it, fantasize CBT works in such cases as well, and fix the cognitive dissonance with patient blaming; in practise severe patients are at risk of being treated like they have a severe psychiatric disorder.
 
That sounds horrific @Arvo. Every severely affected person with ME’s nightmare.

Yeah I think because of ableism they all respect those more mildly affected a lot more. More normal you see.

In my experience you have to deal many more derogatory comments and such like at the milder end (but not so mild you can fully pretend to be well and escape negative judgement), because you interact with more people when you’re able to get out regularly and ableist ideology is pervasive in society, is everywhere.

But people still overall will treat you as person with more worth because you’re more ‘normal’ or at least you’re trying not giving up, which is what people often seem to equate higher levels of debility to.

Where as being housebound bed bound sick makes you a non person as far as most ordinary people are concerned. No one thinks you know anything worth knowing any more, especially not about the condition of your own body.


People buy into the idea that if only we looked sicker we’d get better treatment. As we can see it likely to go the other way. For those put in charge of our health us not putting the ‘effort in’ and jolly well recovering like any proper person presumably would we are problem. One they intend to ‘solve’ through a program of discipline and the further from health we are more punishing the disciplining process will be.

edit:loads of typos and missing words.
 
Last edited:
I will say it again: there needs to be a fresh push to expose these people for what they are, a group effort of advocacy showing what these people say and what it has led to.

The post office scandal would not have been exposed if they simply tried to ignore the companies who were guilty of misconduct.
 
I was unaware of this paper from Wessely and I can't see it elsewhere on the forum. It just demonstrates he's always capable of plumbing new depths:

Enduring beliefs about effects of gassing in war: qualitative study

Objectives To discover the content of enduring beliefs held by first world war veterans about their experience of having been gassed.

https://www.bmj.com/content/335/7633/1313
 
Enduring beliefs about effects of gassing in war: qualitative study

Objectives To discover the content of enduring beliefs held by first world war veterans about their experience of having been gassed.

While I remember, my Grandfather told me that his Uncle was gassed during WWI and suffered from long term health problems following this event.

As a consequence, he was not permitted to resume his job as a miner after the war. Instead he spent much of the rest of his working life travelling from farm to farm picking up odd jobs.

I wonder what he'd think of Wessely's pseudo-scientific drivel?
 
While I remember, my Grandfather told me that his Uncle was gassed during WWI and suffered from long term health problems following this event.

As a consequence, he was not permitted to resume his job as a miner after the war. Instead he spent much of the rest of his working life travelling from farm to farm picking up odd jobs.

I wonder what he'd think of Wessely's pseudo-scientific drivel?
My grandfather was gassed in WW1 and suffered long term health problems following the event. Although, I should add, he was a lovely man with no psychological issues that I was aware of, remarkable really considering what he went through.

His diaries of the war recount times when people were thrown to the ground by explosions and suffered what I assume were concussions/brain damage, and were not the same afterwards. Clear evidence that the whole psychogenic shellshock/neurasthenia idea was, at the very least, not the whole story.
 
Moved posts

Oh, wait--is it Lord Simon now? Or is it Lord Wessely, since I assume it's not hereditary? Does that make him Professor Lord Simon Wessely? If you don't want to use the full spiel, do you say Lord Simon or Professor Lord Simon?

ADDED: Never mind. I just checked and he seems to still be Sir Simon. I guess it's that he wants a lordship? Nonetheless, I'm still curious. Is it then Lord Simon or Lord Wessely?
 
Last edited by a moderator:
I don't think that's right. I think he would be addressed as Lord Wessely, and his full title would be Lord Wessely of Fairyland, not Lord Simon. Either way, given some recent appointments to the Lords, it's hardly an honorable status, if it ever was.
 
Lord Simon, I think, where it's a title in an individual's personal name.

Unless he's named Simon of Twittingdonthorpe (or wherever), in which case he'd be Lord Twittingdonthorpe.

I think Lord Simon would imply a hereditary title, whereas for a life peer these would be the options:
  • The Rt Hon Lord Wessely of Grabalot, or The Rt Hon Simon, Lord Wessely of Grabalot (or the short form Lord Wessely)
  • The Rt Hon Simon Wessely, Lord Grabalot (or Lord Grabalot for short)

See https://en.wikipedia.org/wiki/Life_peer

Sorry cross posted with @Trish who got there first
 
Back
Top