Who said: don't bother testing patients?

[BruceInOz]

As we, and now many other groups have shown, the only determinant of outcome in this condition is strength of belief in a solely physical cause...

I think he means they find correlation and have stretched that to be "the only determinant". They do this all the time and it really pisses me off.

Correlation is perfectly understandable. As pwme we are valid witnesses to our condition. We have weighed our experience of the condition and concluded it is something physical. Correlation could just be reflecting that we are right.

 

[chrisb]

I think he means they find correlation and have stretched that to be "the only determinant". They do this all the time and it really pisses me off.

Correlation is perfectly understandable. As pwme we are valid witnesses to our condition. We have weighed our experience of the condition and concluded it is something physical. Correlation could just be reflecting that we are right.

Precisely. I believe that the earth orbits the sun, but have never considered the possibility that my belief might cause the event.

 

[chrisb]

To return to the original question, I discovered this relevant quotation. (And I must say, for all that I criticise him, I do appreciate SW's making freely available many of his papers which would otherwise be unobtainable.)
www.simonwessely.com/Downloads/Publications/CFS/24.pdf

Journal of Neurology, Neurosurgery, and Psychiatry 1991;54:669-671

...….Misdiagnosis of a number of conditions, both physical and psychiatric, is not unusual in those who have acquired the label of CFS/ME. However, the simple combination of history, examination and basic tests will establish those who require further investigation. 49

In the majority this simple screen will be normal, and over investigation should be avoided. Not only is it a waste of resources, it may not be in the patients' interest, and may reinforce maladaptive behaviour in a variety of ways. "As patients undergo more tests, they will focus on a laboratory abnormality and subsequently find researchers interested in studying these abnormalities".50

This may help the researchers, but not the patient. Whilst over investigation is usually well intentioned, though not advisable, such behaviour must be criticised if it is motivated by a need to find such an abnormality before accepting the patient's predicament as genuine.

There remains a tendency to denigrate those subjects unlucky enough to still have normal results once the round is complete, whose illnesses are thus labelled as "psychogenic", and of little concern. It is still possible to encounter such comments as "this suggests an organic cause for their complaints, and means the syndrome should not be dismissed out of hand as a psychiatric entity".

" Armon and Kurland' provide wiser counsel - "psychosocial disability is real, significant and worthy of treatment even when there are no biochemical or immunologic abnormalities present".....

Edited to paragraph for ease of reference.

 

[rvallee]

This may help the researchers, but not the patient.

The only way to help patients with a disease that medicine misunderstands is through research. Helping the researchers is exactly how you help the patients the most, at a minimum ratio of 99:1. This is literally how it has always worked and how it will continue to work until the heat death of the universe.

Not a single MS patient was helped by therapy addressing their "hysterical paralysis". They were all helped by biomedical research understanding the mechanism of their disease and diagnostic tools. When people keep falling down an open well you don't try to make them comfortable down there and insist that helping them out is what made them fall in the first place, you freaking patch the hole to stop people from falling into it.

It's like he lives in an alternative universe where knowledge is fixed to what he personally understands and the possibility of new knowledge being acquired in the future is an absurd belief that needs to be rectified with therapy.

Wessely would totally have been a forceful opponent of the germ theory of disease if he had practiced at the time. His incompetence is breathtaking.

 

[Hoopoe]

I can solve a problem without understanding it, said no intelligent person ever.

Of course they believe that they understand it. They just don't want to clearly express their beliefs because it's advantageous to not do so.

 

[JaimeS]

Of course they believe that they understand it. They just don't want to clearly express their beliefs because it's advantageous to not do so.

Exactly.

 

[JaimeS]

There are holes in Per Fink's and Simon Wessley's reasoning: magical thinking, post hoc ergo propter hoc reasoning, cherrypicking, and on and on. Magical thinking is a tendency for some people, and once they truly believe that their thoughts shape their reality, that kind of thinking can be very challenging to unseat. (How do you ever begin to disprove it?) The BPS crowd may come up with these harmful theories because of deficiencies in logical reasoning.

Wessley strikes me as someone with a deep understanding of how other people think about things -- that's how he manages to thread the needle so well when gauging his audience. What I hear from people who have spoken to him personally is that even people who are really against his way of thinking come away from the conversation feeling a bit hypnotized, saying he presented his arguments in a way that is compelling while being so charming that one feels a heel to disagree. They still don't believe in his theories, but he manages to change their impression of him. It goes to show that one can have remarkable interpersonal intelligence while still having little logical reasoning ability -- and/or relying on audience bias to find support for a theory, rather than relying on painstakingly-gathered data.

Oftentimes when I begin to think people are stupid or ignorant, I'm actually aiming for a very different end goal than they are. When you have very different goals, the other person's actions can seem foolish, stupid, or even nonsensical.

In a way, Wessley's talks -- and papers -- are more about playing to the audience than anything else. And if he receives his applause, as far as he's concerned, he's done good work. And with this goal in mind -- rather than helping patients -- he has risen far.

 

[Inara]

@JaimeS, what you write reminded me of "Snakes in Suits".

 

[sea]

This is becoming a meme. I've heard this multiple times in the past few weeks! I wonder what's led to an increase in this suggestion (tongue-in-cheek or not) in chronic illness community!

In animals “sickness behaviour” is taken as a sign that something is physically wrong that needs to be diagnosed and addressed. An animal who chooses to sleep more and exercise less is not treated with CBT and GET.

In humans it is becoming much more common for sickness behaviour to be attributed to psychological causes and maladaptive beliefs. Thus there is no investigation or treatment recommended beyond CBT and GET.

 

[JaimeS]

"Snakes in Suits"

Never read it, but for those who're curious, it's about psychopathic behavior from those in power.

 

[Sean]

Wessley strikes me as someone with a deep understanding of how other people think about things -- that's how he manages to thread the needle so well when gauging his audience. What I hear from people who have spoken to him personally is that even people who are really against his way of thinking come away from the conversation feeling a bit hypnotized, saying he presented his arguments in a way that is compelling while being so charming that one feels a heel to disagree. They still don't believe in his theories, but he manages to change their impression of him. It goes to show that one can have remarkable interpersonal intelligence while still having little logical reasoning ability -- and/or relying on audience bias to find support for a theory, rather than relying on painstakingly-gathered data.

Oftentimes when I begin to think people are stupid or ignorant, I'm actually aiming for a very different end goal than they are. When you have very different goals, the other person's actions can seem foolish, stupid, or even nonsensical.

In a way, Wessley's talks -- and papers -- are more about playing to the audience than anything else. And if he receives his applause, as far as he's concerned, he's done good work. And with this goal in mind -- rather than helping patients -- he has risen far.

He is so good at sophistry and so in love with the sound of his own voice that he even fooled himself, and now can't admit it without a massive blow to his distended ego, and loss of reputation and power.

And we pay the price.

 

[Peter T]

If anything, it almost appears as though Wessley is saying that people who choose to call their disease ME are more likely to be imagining it? Is that his point?

I wonder if behind what he is saying is the nice ameniable patients that let us call their condition whatever we want and do what we tell them have a genuine condition, but those patient insisting they have a biomedical condition and reject our advice are 'wrong uns' that are making things up. Is his statement unconsciously about control and power, dividing patients into the acceptable compliant ones and the unacceptable [uncompliant] ones?

 

[chrisb]

n a way, Wessley's talks -- and papers -- are more about playing to the audience than anything else.

Interesting that you make this point. It occurred to me yesterday upon reading that editorial, referred to above, that when reading SW you have to compare what he says with his then state of knowledge or belief, as evidenced by his other writing. They are not always entirely compatible.

The editorial makes it sound as if he is solely concerned with a proper scientific appraisal of the evidence. What then is to be made of the failure to mention either the role that dysfunctional cognitions and maladaptive behaviour allegedly play in the "perpetuation" of the illness and of the methods purportedly used to treat them? These views had been held since at least 1989 and were reaffirmed in a paper that same year, 1991. Should it be assumed that those conclusions are speculative and not worthy of mention in an editorial in a serious journal?

He says in the Psychiatry and CFS section that the evidence does not point to psychiatric disorders being the cause of CFS. How do you classify dysfunctional cognitions and maladaptive behaviour? Clearly they are not amongst the recognised psychiatric disorders to which he is probably referring, but you wouldn't regard them as anything other than psychiatric. Or I wouldn't.

Games are also being played with the word "cause". He would, and does, say that the original illness is caused by a virus, or whatever, and that when recovery from that has occurred it is merely perpetuated by the psychological factors. Hence the illness is not caused by psychological factors. This is semantics. An equally sustainable model in line with the BPS approach would be to say that a person originally has PVFS, from which, at some unknown time, they recover, but that their beliefs and behaviour cause the continuance of illness as CFS. In such a model cognitions and behaviour are the cause of CFS. Words mean what I want them to mean, and what he wants them to mean.

 

[Lucibee]

I'm wondering if anyone has systematically tracked the trail of misinformation that the likes of Wessely, White, Sharpe, Manu etc have left in their wake.

I seem to recall both White and Wessely claiming that they'd looked into viral and biochemical causes and found nothing. Yet, in amongst the papers the SW posts on his website, there are studies in which they did find associations to potential markers (HLA, hypocortisolemia, HPA dysfunction, etc), - but subsequently dismissed them because they did not back up their ideas about the condition.

But what's worse is the perpetuation of myths and half-truths. The whole smokescreen of "Oh, *we* don't think it's all in the mind, because we're non-cartesian holists" while simultaneously reinforcing the 'ME is all in the mind/simply a belief' trope.

 

[Hoopoe]

But what's worse is the perpetuation of myths and half-truths. The whole smokescreen of "Oh, *we* don't think it's all in the mind, because we're non-cartesian holists" while simultaneously reinforcing the 'ME is all in the mind/simply a belief' trope.

Claim that you're very much against something, so that you can more easily deflect accusations of doing it when you're actually and somewhat covertly doing it.

 

[Inara]

Is his statement unconsciously about control and power, dividing patients into the acceptable compliant ones and the unacceptable [uncompliant] ones?

Personally I think yes. Or the "deserving" and "undeserving" ones. That tells it all.

After I questioned the correctness of the psycho diagnoses I was given, and after the ME diagnosis, I ordered my patient file. The file explained my feelings I had during an appointment with the psychiatrist: I always had the distant feeling that guy thinks I'm a crank that imagines her symptoms and believes in a physical cause. I felt he doesn't take me serious at all. (He didn't know that I knew it in my heart to be true. And even if he did, he wouldn't have cared - the patient is not to be trusted.) He was convinced I have a lack of disease acceptance and viewed me as "therapy resistant". It's something he also wrote to authorities, which led to problems.
I was not compliant (although most of the time I was...only when I started to suspect there's something else I was classified as "non-compliant", which drags on till today) - which needs to be punished.

I think it's really abusive.

 

[JaimeS]

Is his statement unconsciously about control and power, dividing patients into the acceptable compliant ones and the unacceptable [uncompliant] ones?

Oh, abso-freakin-loutely.

And I see it carried straight to the patient.

There are a few threads floating around Twitter right now re: "what is the most ridiculous thing someone has told you re: your disease".

One told her doctor she had "CFS" and he replied, "oh, okay. Good you didn't say 'ME' because you know what they say: those people are all about ME, ME, ME."

WHOA.

People who say they have CFS are compliant.

People who say they have ME are self-absorbed and noncompliant.

This person views the name ME as being more about identity politics than about what disease you do or don't have...

And that seems to have originated with Wessley.

It is SO WEIRD how one, single paper or talk can have these endless ripples...

I'm wondering if anyone has systematically tracked the trail of misinformation that the likes of Wessely, White, Sharpe, Manu etc have left in their wake.

Now I want to.

 

[JaimeS]

(HLA, hypocortisolemia, HPA dysfunction, etc), - but subsequently dismissed them because they did not back up their ideas about the condition.

Interesting that Wessley mentions high serotonin as being an issue, which is the literal premise of the metabolic trap.

 

[DigitalDrifter]

https://www.margaretwilliams.me/2003/mental-health-movement-persecution-of-patients-select-ctte.pdf - The end of this document has a wealth of useful quotes including about refusing testing. On page 57 Simon Wessely synonymizes CFS with MUS then conflates MUS with somatising, all without providing a shred of evidence for his claims.
LA Page, S Wessely Journal of the Royal Society of Medicine 2003:96:223-227

Thus one sees how the cycle of excessive investigation can begin. If enough investigations are performed, minor and irrelevant abnormalities will be detected and themselves become hypothesis generating.

He goes on to say:

Reassurance is particularly important in patients who have hypochondriasis or MUS.

Notice how he words so it can be interpreted as "hypochondriasis is the same as MUS" or "hypochondriasis AND MUS", he usually leaves himself enough rope to save himself.

 

[RDP]

I know that there are at least a few who've said not to run blood tests or anything that might show objective dysfunction because that will strengthen false illness beliefs.

Anyone have that on hand?

Much thanks in advance,

Jaime

There is a video of a talk by Michael Maes on the Australian ME group's (eMErge) site. Early on in the talk, he quotes two European government bodies whose policy was (I don't know when) exactly what you describe.