Brian Hughes - If you spend 20 years gaslighting your patients, perhaps you should think twice before accusing *them* of trolling *you*

[Jonathan Edwards]

The model is behavioral, implying something directly under someone's control. This is not a characteristic of mental illness, over which thoughts and beliefs play little role. It's not really about psychological either, it's about behavior, about conscious choices we make and can adjust.

This is the reason why when I first heard of CBT for ME it seemed to me to be directly in conflict with the principles of psychiatry.

Psychiatry actually divides illness into two types: neuroses and psychoses.

Neuroses are thought of as what you call behavioural illnesses. They involve distortions of normal thoughts of a sort that anyone can reasonably see themselves perhaps being subject to. The illness is understandable and rational. We all get sad when things are bad. Neurotic depression is getting a bit too sad, in appropriate circumstances perhaps but over the top. Because neuroses are thought of as within the realm of rationality they are believed to be amenable to counselling and rational proposals for restoring normal behaviour.

Psychoses, in contrast, involve distortions of thoughts that normal people would find hard to see themselves ever being subject to. The illness is not understandable and the thoughts are irrational. Beliefs and emotions bear no relation to the reality of surroundings. As a result psychoses are thought of as not amenable to rational proposals or counselling.

If ME/CFS is an illness of unhelpful beliefs about being unable to return to normal activity it seems pretty certain to be a psychosis because such beliefs would be quite irrational in the circumstances. And psychosis is not supposed to respond to CBT. The few studies that have been done seem to confirm that, although people keep trying it seems.

Put more simply, if people were really mad enough to think they were desperately ill when in fact they are fine, it is pretty unlikely that a lady with a blue cardigan is going to talk them out of it.

 

[large donner]

Simon Wessely@WesselyS

30 years ago we proposed a model. It wasnt perfect. For example we later showed improvement occurred independently of mood. But looking back I think the paper was important as the first challenge to the then prevailing therapeutic nihilism which said that nothing could be done

Bizarre, if he claims that improvement occurs independently of mood whats the point of him and his CBT?

So he challenged the notion "that nothing could be done" by showing that mood has no bearing on the claimed improvement?

No doubt there's a trap one is supposed to walk into there, wherby he can say mood is not the same as behaviour and hence the double speak goes off on another never ending set of tangents.

 

[TiredSam]

For example we later showed improvement occurred independently of mood.

I can confirm this, because for the last five years I have alternated between grumpy and f***ing furious and it hasn't stopped me improving.

Wessely "showing" that improvement and mood are independent is only amazing to those who promote / fall for the whole positive thinking bullshit in the first place. So Wessely is actually crowing about his skills in bullshitting bullshitters. I am quite happy to take my hat of to him in acknowledging that valuable talent, but can't help noticing that it's less than bugger all use to patients.

 

[TiredSam]

I do feel better after that.

 

[Esther12]

I knew I should have gone for "therapeutic nihilism" in my Evasive BS Bingo!

 

[Amw66]

I knew I should have gone for "therapeutic nihilism" in my Evasive BS Bingo!

Forgive me if wrong, but 30 years ago it would seem that there were more " treatment" options.

Nigel Speight had good responses in severe paediatric s from IViG, antivirals were available for those where HHVs were an issue. Not a cure but could be a help with symptoms.

There seemed to be ( i could be wrong, this is an entirely different universe to " standard" illnesses) options for people and doctors who could try things. This has effectively been shut down .

Sadly the biggest effect seems to have been to limit research in the field. To have that as a legacy is damning.

 

[Barry]

The model is behavioral, implying something directly under someone's control.

I don't agree with that. Behavioural problems can be very deeply ingrained, and extremely difficult, perhaps impossible to control without expert guidance.

 

[Barry]

I do feel better after that.

Castigating Bullshit Therapy.

 

[lunarswirls]

View attachment 6508

The letter I think Cosmicella is referring to can be found on pg 17+18 of this PDF:
https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

Here is what Wessely actually said:

I also feel that this decision, if it has been made, reflects an undesirable stigmatisation of psychiatric disorders. The main difference between CFS and the major psychiatric disorders is neither aetiological, nor symptomatic, but the existence of a powerful lobby group that dislikes any association with psychiatry.

It is also a most unfortunate message to send to sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning, for which there is little effect treatment, and a poor prognosis. It will discourage any sensible efforts at rehabilitation. As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome. I cannot believe that this is the intention of the Department, if only on grounds of cost!

I believe that the Department is making an error if it accepts the partisan views put forward by pressure groups as a basis for making medical decisions. I also believe that it is a decision that the Department will come to regret, since it seems likely the result will be an ever increasing stream of claims for permanent benefits in people who might otherwise have had a chance of recovery.

(bold emphasis in original text, underlined emphasis mine)

 

[alex3619]

I suspect it will be inevitably be true that psychological and social factors do indeed influence outcomes of just about any illnesses

Even broken bones. Some of the basic inferences and claims in psychogenic medicine are accurate, but where they go from there is pure speculation without either sound evidence nor sound scientific enquiry.

As has been mentioned in this thread, though not this way unless I missed it, this is black box medicine. Everything they need to demonstrate their accuracy in ideas is pushed into a black box and nothing can be scientifically examined. No proven mechanisms are given.

Psychogenic claims are still unproven in all of medicine. There is lots of rhetoric and hand-waiving though. It remains an outside chance that they are right in some cases, but historically in every case we understand they have been proven wrong. We know the list, starting with tuberculosis and diabetes, and including genetic, metabolic, hormonal, pathogenic, neurological and immune disorders ... many claimed to be psychogenic.

 

[Jonathan Edwards]

Forgive me if wrong, but 30 years ago it would seem that there were more " treatment" options.

Nigel Speight had good responses in severe paediatric s from IViG, antivirals were available for those where HHVs were an issue. Not a cure but could be a help with symptoms.

There seemed to be ( i could be wrong, this is an entirely different universe to " standard" illnesses) options for people and doctors who could try things. This has effectively been shut down .

Sadly the biggest effect seems to have been to limit research in the field. To have that as a legacy is damning.

Maybe 30 and certainly 40 years ago it was acceptable for physicians to 'suck it and see' for any treatment they liked that had a license for something. We stopped doing that because it wasted huge amounts of money and quite often caused harm, and moved to the position that treatments need reliable testing before being used in routine practice.

The situation for IVIg is hard to judge and may be worth revisiting but on balance I think the evidence is that it does not work. The evidence for antivirals is that they do not work. Nigel Speight might have seemed to get 'responses' but it is likely that this was improvement for other reasons. The results with open label rituximab are worth looking hard at. There were several apparent responses and even a complete recovery. However, the phase 3 blinded study indicates that none of these were due to the drug. It does not work - for anyone as far as we can see.

I don't think shutting down off label treatments has limited research. Off label usage is not research. It needs to be replaced by research - including proper trials. We have now had research that makes it look most likely that there was never a good rationale for IVIg or antivirals anyway.

 

[Amw66]

Maybe 30 and certainly 40 years ago it was acceptable for physicians to 'suck it and see' for any treatment they liked that had a license for something. We stopped doing that because it wasted huge amounts of money and quite often caused harm, and moved to the position that treatments need reliable testing before being used in routine practice.

The situation for IVIg is hard to judge and may be worth revisiting but on balance I think the evidence is that it does not work. The evidence for antivirals is that they do not work. Nigel Speight might have seemed to get 'responses' but it is likely that this was improvement for other reasons. The results with open label rituximab are worth looking hard at. There were several apparent responses and even a complete recovery. However, the phase 3 blinded study indicates that none of these were due to the drug. It does not work - for anyone as far as we can see.

I don't think shutting down off label treatments has limited research. Off label usage is not research. It needs to be replaced by research - including proper trials. We have now had research that makes it look most likely that there was never a good rationale for IVIg or antivirals anyway.

Thanks for your explanation.
The situation is confusing as antivirals do seem to help some people. Anti retrovirals similarly.
Whether this is because they try them at a certain point in their illness, or they are a responding cohort i don' t know.
Dr Nina Muirhead springs to mind as a recent example.
Given that we don' t do basic serology it seems to be a very hit and miss process anyway.

 

[Sly Saint]

 

[BruceInOz]

Here is what Wessely actually said:
(emphasis mine)

I noticed that your emphasis obscured the emphasis in the original, which was:

It is also a most unfortunate message to send to sufferers. It colludes with the erroneous belief that this is a severe disorder of neurological functioning, for which there is little effect [sic] treatment, and a poor prognosis. It will discourage any sensible efforts at rehabilitation. As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome. I cannot believe that this is the intention of the Department, if only on grounds of cost!

They were that sure that they had checked every possibility and this was the only determinate? Get real. And I bet it was only a correlation anyway with no demonstration of causality.

 

[MEMarge]

I do feel better after that.

So do I, thanks Tired Sam

 

[Barry]

I noticed that your emphasis obscured the emphasis in the original, which was:

As we, and now many other groups, have shown that the only determinant of outcome in this condition is strength of belief in a solely physical cause, then it will also itself contribute to disability and poor outcome. I cannot believe that this is the intention of the Department, if only on grounds of cost!

That emphasis of SW's on 'only' in the above reinforces what an abuse to patients his words truly are. To make such an emphatic statement born of arrogance and blind faith, rather than real evidence, to the head of the department governing welfare support to such patients, shows him in an extremely poor light.

That phraseology is virtually synonymous with stating pwME to be hypochondriacs; most people branded as hypochondriacs are invariably also branded as malingerers. SW will surely have been only too well aware of this at the time he wrote this (and I don't think ever said anything to the contrary for clarification?). SW could never have written this without knowing Aylward would have drawn that inference, so can only assume SW wrote with that deliberate intent. I suspect therefore that SW intended for Aylward to ensure DSS payment decisions to pwME would presume them to be hypochondriacs, and probably therefore also malingerers.

You have to hand it to SW, he really knows the art of brinkmanship when it comes to transmitting a message without quite saying it. But it comes back to what I've said before: Patterns of behaviour, leaving a trail a mile wide.

 

[Suffolkres]

That emphasis of SW's on 'only' in the above reinforces what an abuse to patients his words truly are. To make such an emphatic statement born of arrogance and blind faith, rather than real evidence, to the head of the department governing welfare support to such patients, shows him in an extremely poor light.

That phraseology is virtually synonymous with stating pwME to be hypochondriacs; most people branded as hypochondriacs are invariably also branded as malingerers. SW will surely have been only too well aware of this at the time he wrote this (and I don't think ever said anything to the contrary for clarification?). SW could never have written this without knowing Aylward would have drawn that inference, so can only assume SW wrote with that deliberate intent. I suspect therefore that SW intended for Aylward to ensure DSS payment decisions to pwME would presume them to be hypochondriacs, and probably therefore also malingerers.

You have to hand it to SW, he really knows the art of brinkmanship when it comes to transmitting a message without quite saying it. But it comes back to what I've said before: Patterns of behaviour, leaving a trail a mile wide.

......and let's not forget this furor... says, Richard Horton, "The BMJ recently ran a vote on bmj.com to identify the “top 10 non-diseases.”1 Some critics thought it an absurd exercise,2 but our primary aim was to illustrate the slipperiness of the notion of disease. We wanted to prompt a debate on what is and what is not a disease and draw attention to the increasing tendency to classify people's problems as diseases."

Clinical Review
In search of “non-disease”
BMJ 2002; 324 doi: https://doi.org/10.1136/bmj.324.7342.883 (Published 13 April 2002) Cite this as: BMJ 2002;324:883

https://www.bmj.com/content/324/7342/883.1

 

[Sly Saint]

anyone know where the quote in this tweet came from?

 

[Esther12]

anyone know where the quote in this tweet came from?

p141 here: https://valerieeliotsmith.files.wordpress.com/2015/01/natarchbn141dss.pdf

Maybe their interpretation of Wessely's letter on p227?

Some of RyanNCTweets' messages look unhelpful to me, with over the top confidence about questionable claims and some needless insults. Just saw them claiming to be sure enteroviruses were the cause of CFS in an exchange with someone else who was sure XMRV was the cause.

 

[chrisb]

I noticed that your emphasis obscured the emphasis in the original, which was:


They were that sure that they had checked every possibility and this was the only determinate? Get real. And I bet it was only a correlation anyway with no demonstration of causality.

anyone know where the quote in this tweet came from?

Just had a quick look through the national archives DWP file. It looks to be in the minutes of a meeting dated 30 March 1992 beginning at page 139. Sorry I can't help with copying that.