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

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.

 

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.

 

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.

 

I do feel better after that.

 

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.

 

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

 

Castigating Bullshit Therapy.

 

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:

(bold emphasis in original text, underlined emphasis mine)

 

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.

 

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.

 

https://twitter.com/user/status/1109027732619493376

 

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.

 

So do I, thanks Tired Sam

 

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

 

https://twitter.com/user/status/1109337183360565248


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.

 

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.