Article: 'Is standing up for expertise a fool’s errand?' - Simon Wessely still being portrayed as the 'victim'

[JohnTheJack]

But what if reduction of pain leas to an increase in exercise, and an increase in exercise leads to exacerbation of the underlying condition? Presumably pain serves provides some evolutionary advantage, or it would have failed to survive the last few hundred million years. I realise that the BPS types will now jump up and say that this proves that the condition is nothing but avoidance behaviour fuelled by fear.

Well, yes, that's a legitimate concern. But it doesn't detract from the point that the placebo is legitimate. All interventions can cause harm and must be used with consideration for all factors.

 

[Invisible Woman]

Wessely isn't an expert on ME, or CFS,

This I think is at the heart of the sweeping acceptance of the work of Wessely, White, Chalder.

They claim to be experts in ME/CFS, but are not. How can you an expert and yet still no little or nothing about it?

They are "expert" in delivering particular treatments that they have helped devise. Delivery of those treatments is carried out regardless of how appropriate or effective those treatments actually are because apparently that's acceptable in psychiatry.

One of the main differences between them and the biomed scientists, as I see it- the likes of Davis, Fluge etc. are looking objectively at the disease through the lens of their own expertise to see what they can find out and then objectively report that.

The difference being the true scientists haven't built their careers on speculative treatments. They've built them on being scientists and furthering knowledge in their field.

 

[chrisb]

One wonders how expertise in "dysfunctional cognitions and maladaptive behaviour" is obtained.

 

[Jonathan Edwards]

The point remains, though, that for subjective symptoms, a placebo is legitimate. If you can help someone feel less pain by giving them sugar pills, then give them sugar pills.

I think this is a misconception, John.

The problem with placebos is that they tend to work in contrived artificial situations like trials in a way that they do not outside trials. And most of the time what is called a placebo effect is some other spurious reason for improvement. The key problem is that it is almost impossible to tease all these out in trials.

Using a placebo is always an act of bad faith because it involves conning the patient into thinking the benefit was due to a treatment when it was just due to thinking it was. Placebos may be legitimate treatments for illnesses that are merely in themselves false beliefs (if such exist) but I don't see them as legitimate for pain etc.

The use of placebos is also highly dangerous because it is so often a way to avoid making the right diagnosis.

 

[Kalliope]

An interview from 2009 with Simon Wessely just resurfaced in my Facebook newsfeed. This might not be the best thread for it, but I wanted to share it anyway as some of his arguments are still being used by doctors here to this very day. He sets a tone where it's acceptable to talk down ME patients as a group. That had huge consequences for us.

The interview is from a big information site about health and both patients and health care personnel are using it.

Wessely says he has had it with nonsense from activists. That he has examined and treated over 3 000 ME patients. Then the article lists all his credentials.

He further says that 99% of doctors looks at this as a combination of psychological and physiological phenomena. That doctors aren't very good at dealing with patients with symptoms lacking an explanation, but psychiatrists and GPs on the other hand are used to this.

"Unfortunately there is a small number - and that is a small number - patients who won't accept this." He says this is because patients think it's the same as people believing they are simulating, hysterical or just imagining things. That's an insult to everyone who has illnesses as depression, panic disorders etc. But Wessely is afraid the stigmatisation of psychological illnesses is still strong.

He says mononucleosis is like a hit and run accident, but that three years afterwards it's no longer the car that's the problem. It's then about secondary handicaps which are treatable. For instance depression. With exception of some few fanatics (sic), most people don't have any problem with this.

He also critiques WHO's classification of ME as neurological and says that 98% of the description of post viral chronic fatigue syndrome is identical with the description of neurasthenia.

NHI.no: Mektig lei
google translation: Has had it

 

[Jonathan Edwards]

If placebos were legitimate for subjective symptoms surely they would be even more legitimate for objective measures? If they worked.

 

[Hoopoe]

One gets the impression they think the root of the illness is a self-perpetuating negative thought process and the placebos are an acceptable way to deliver a positive stimulus that patients need to disentangle themselves from their dysfunctional thoughts.

They would never openly admit that because it would make it impossible to treat patients. Instead they would create superficially credible but on closer examination incoherent explanations to justify treatment and secretly deliver their positive stimulus. Maybe that's why it doesn't bother them that the deconditioning hypothesis doesn't make any sense.

I'm just trying to make sense of Wessely's unstated but de facto position that placebos are an acceptable treatment for ME/CFS. Maybe I'm overthinking this and they're just trying to avoid admitting their treatment failed to deliver results better than a sham treatment, and so it suddenly is acceptable to deliver what is probably no better than a placebo treatment.

 

[Invisible Woman]

Wessely says he has had it with nonsense from activists. That he has examined and treated over 3 000 ME patients. Then the article lists all his credentials.

Has he though?

I remember seeing a documentary in the 90s or early '00s about ME. They discussed a child who was a cancer survivor and then went on to develop ME. Her parents didn't realise just what they were signing up to when they brought he to see Wessely. They had their initial assessment and agreed to inpatient care. Then, after the child was admitted, they tried to visit only to discover she was in a locked ward & they couldn't see her for 3 months. By the time the child was released she was much worse.

In his own defence Wessely said something along the lines of - very busy...haven't time to personally see or treat everyone on the unit...child treated by the "team"=same difference.

Slippery language again. Define "examine" & "treat". The problem is people take him at his word in good faith.

 

[Trish]

I think placebos in ME are actively harmful.

I have, especially in the earlier years of my ME, tried various alternative treatments that had what I later realised was a modest placebo effect that I misinterpreted as the treatment helping with my ME.

I felt a bit better. I therefore felt able to be a bit more active - result - crashed badly, sometimes only after a few weeks of increased activity built on this false hope.

 

[chrisb]

Wessely says he has had it with nonsense from activists. That he has examined and treated over 3 000 ME patients. Then the article lists all his credentials.

One would have expected SW to be well enough read to see immediately the dangers in that line of argument.

As for Adler I was much impressed by a personal experience. Once in 1919 I reported to him a case which to me did not seem particularly Adlerian, but which he found no difficulty in analysing in terms of his theory of inferiority feelings, although he had not seen the child. Slightly shocked , I asked him how he could be so sure. "Because of my thousandfold experience", he replied; whereupon I could not help saying: "And with this new case, I suppose your experience has become thousand-and-one-fold.

Karl Popper Conjectures and Refutations

 

[Hoopoe]

Something that also bothers me:

How would one go about distinguishing biased self-reporting from an actual improvement caused by a placebo, in the context of a "subjective" illness?

Surely they must realize that obtaining what appears to be an improvement with a placebo treatment cannot safely be assumed to be a real improvement but could be biased self-reporting.

I would argue that ME/CFS may involve subjective symptoms but the effects on the life on the person are objectively measurable, even if it isn't very practical. An outside observer could see how often I leave the house, how fast much and fast I can walk, and so on. Illnesses that involve changes in observable behaviour are not subjective illnesses.

I think it would be possible to come up with a clinical trial design that largely eliminates the problem of biased self-reporting.

Having this sort of design would allow them to safely experiment with all these various tricky ideas without risk of, bear with me, fooling themselves with false beliefs about the illness.

 

[Jonathan Edwards]

One might think that psychiatry, having no reliable base, might be where angels would fear to tread - perhaps that's the problem.

 

[Invisible Woman]

so it suddenly is acceptable to deliver what is probably no better than a placebo treatment.

Here's where the lack of reporting of harm from PACE(& CFS clinics) comes into play. Even if it's a null treatment it doesn't matter, it won't hurt you.

In this case, placebos can cause harm.

 

[Hoopoe]

Another problematic aspect is that patients are apparently de facto treated as having false illness beliefs on the basis that it's not possible to "objective demonstrate a disease".

You can't just assume this. You have to, you know, demonstrate that there are false illness beliefs

At least when making policy decisions at the population level.

 

[Barry]

I thought two things he said were interesting:

First, he is now qualifying the 'safer in Iraq' comment by saying he felt 'emotionally safer'. I haven't seen that before.

Second, he is not claiming to treat patients but help them 'manage their symptoms'. It comes to the same thing, of course, but it still stood out to me. Of course, what they have been doing with a few patients is help them manage the effects of their symptoms, which is another thing again.

He is a supremely capable shape-shifter. He keeps trying to morph into something different, that lets him off the hook from things he has said and done in the past, but subtly, so most people will think it is what he has been saying all along. So it is important to ensure his real history is not lost.

 

[Barry]

Wessely appears to be implying that placebos are an acceptable treatment for "subjective" conditions.

Well he'd better stick to treating subjective conditions that benefit from placebo treatments then hadn't he, wherever they might be ...

 

[Barry]

But what if reduction of pain leas to an increase in exercise, and an increase in exercise leads to exacerbation of the underlying condition? Presumably pain serves provides some evolutionary advantage, or it would have failed to survive the last few hundred million years. I realise that the BPS types will now jump up and say that this proves that the condition is nothing but avoidance behaviour fuelled by fear.

Quite so. If you ignore the pain from a fractured bone and just "push through" it anyway ... you may well do exactly that.

 

[Sean]

If placebos were legitimate for subjective symptoms surely they would be even more legitimate for objective measures? If they worked.

Exactly. Subjective improvement must indirectly lead to objective improvement elsewhere.

Wessely himself said that

"in the later stages of treatment patients are encouraged to increase their activity (which must ultimately be the aim of any treatment)"

Wessely, David, Butler, & Chalder – 1990

Otherwise what is the point of simply priming patients to report temporary, modest, and practically meaningless gains on subjective measures? Especially for chronic conditions.

Even if ME was what Wessely claims it to be, then his treatments must still lead to patients improving and getting at least a fair chunk of their 'normal' lives back.

But those treatments clearly don't. So he has nothing. And he knows it.

Hence his endless revisionist sophistry.

I think it would be possible to come up with a clinical trial design that largely eliminates the problem of biased self-reporting.

Having this sort of design would allow them to safely experiment with all these various tricky ideas without risk of, bear with me, fooling themselves with false beliefs about the illness.

Ironically, that is (partly) what PACE originally was.

But they then either failed to collect relevant objective data (actimeter outcomes), or downplayed, misconstrued, or simply ignored the solid collective null result from the objective measures that they did collect.

This, more than anything, is where their sin lies. They refused to face up to what the evidence from their own "definitive" trial was clearly saying.

If they had said in the main PACE paper something like 'these treatments and this approach have not delivered what we had hoped for, their explanatory and therapeutic power is poor, and it is time to try something else', they probably would have got away with it. They might even have been considered good examples of honest scientists at work.

But they didn't. They chose instead to keep doubling down on their denial and advocacy, and their ruthless assault on the credibility and integrity of their critics.

So it is important to ensure his real history is not lost.

This.

 

[Snow Leopard]

The point remains, though, that for subjective symptoms, a placebo is legitimate. If you can help someone feel less pain by giving them sugar pills, then give them sugar pills.

But are they actually feeling less pain?

We can't just assume the conclusion is true.

It's like me saying: assume extraterrestrial beings exist, these beings could threaten our species ongoing existence, therefore we need to develop systems and technologies to defend ourself. It seems reasonable, but is based on a very big assumption.

 

[Snow Leopard]

One might think that psychiatry, having no reliable base, might be where angels would fear to tread - perhaps that's the problem.

Notice how every time someone questions a pillar of psychiatry, they always respond with deflections? Such as accusing the questioner of mind-body dualism, mentioning about the central importance of a bio-psycho-social view (despite the continued lack of connected research or medical practise since Engel's famous publication) and how we shouldn't stigmatise those with mental illnesses.
It is the same generic reply every time for decades.

I'm not sure if it is because they think they are too important to actually address the concerns of the questioner, or because they realise that it would look really bad for the field if they acknowledge the importance of the question.