"Abnormal illness behaviour" and the missing citations.

You will, from time to time, have seen references to "abnormal illness behaviour" in connection with ME or CFS, and these will no doubt have cited the various papers by Mechanic on the subject of "illness behaviour". It seems that this is not quite the full story. There appears to be a lacuna (if a lacuna can appear), as there seems to be a further strand of literature specifically on "abnormal illness behaviour".

A few weeks ago we had discussions on another thread started by a tweet from Michael Sharpe responding to someone and saying that he had never used the different term "abnormal illness beliefs" as being a component of the condition. He may well be right. His favoured terms seemed to be "dysfunctional cognitions and maladaptive behaviours" (eg Psychiatric Management of PVFS. British Medical Bulletin (1991) vol 47 no 4 @993).

There the matter might have rested, had it not been for the unease engendered by this term, and the absence of evidence both for the "dysfunction" (with its implicit suggestion of "functional illness"-and we now know about that) and maladaption, and for the evolution of so absurd an idea, apparently unsupportable by evidence.

However any distinction between abnormal illness behaviour and abnormal illness beliefs appears to be fudged.

"Illness behaviour is the term employed to describe the ways in which people monitor their bodies, define and interpret symptoms, take remedial action, and utilise sources of help; broadly, it refers to how they view bodily indications and the conditions under which they come to see these as abnormal (Mechanic 1986) Abnormal illness behaviour implies a biased and distorted view, and the term is used to indicate

'the persistence of a maladaptive mode of experiencing, perceiving, evaluating and responding to one's own health status, despite the fact that a doctor has provided a lucid and accurate appraisal of the situation and management to be followed (if any), with opportunities for discussion, negotiation and clarification, based on adequate assessment of all relevant biological, psychological, social and cultural factors....'

It is admitted that this definition raises issues about the accuracy of the medical opinion!"

Colette Ray. Interpreting the Role of Depression in Chronic Fatigue Syndrome in Post viral Fatigue syndrome (Myalgic Encephalomyelitis) eds Jenkins and Mowbray @p100.

It would be not be unreasonable to summarise that section quoted by Ray as "dysfunctional beliefs and maladaptive behaviours".

The part quoted by Ray appears to intertwine beliefs and behaviours. What is interesting about the quoted passage is that it comes not from Mechanic but from Pilowsky I (1986) Abnormal Illness Behaviour (dysnosognia). Psychotherapy and psychosomatics,46, 76-84 @p76.

Bear with me. I'm coming to the point.

It is Pilowsky and not Mechanic that David, Wessely and Pelosi refer to in their 1988 paper

Post viral fatigue syndrome- Time for a new approach​

when they say:

Hysteria itself is an outmoded diagnosis and is being replaced by the concept of "abnormal illness behaviour." This takes account of the interaction between "organic" illnesses and psychiatric symptoms and a more sensitive appreciation of how social factors govern the presentation and outcome of illness. It is a better description of the often fraught interplay between sufferers with the postviral fatigue syndrome and their doctors.20

Pilowsky I. Abnormal Illness behaviour. Br J Med Psychol, 1969, 42 347-51

Given that this idea seems seminal to the later work, the paucity of further reference to it is odd. Having once quoted it, it cannot be that they are unaware of its existence. One would reasonably expect this to appear wherever there is reference to Mechanic or the oft-quoted Imboden or the Eisenberg paper of 1988 (although the appeal of the Eisenberg may have diminished since the Titanic references appeared). I have looked in various likely papers and the Wessely, Sharpe Hotopf book but can find no mention.


Even Goldberg, who starts

"Although chronic fatigue syndrome, or "neurasthenia" has been recognised for over a hundred years...….." and later states "It is possible to understand chronic fatigue in terms of chronic abnormal illness behaviour; cognitive and behavioural changes lead to symptom perpetuation."

Psychiatric perspectives; an overview. TO Woods DP Goldberg . British Medical Bulletin (1991) vol 47 no 4 pp908-918

provides no authority for the proposition.

One might be forgiven for thinking there must be a reason for the suppression of the part played by Issy Pilowsky, who apparently studied at Sheffield under Erwin Stengel before moving to universities in Sydney and Adelaide. This is the link to the paper quoted by David et al but it is paywalled beyond the first page.
https://onlinelibrary.wiley.com/doi/10.1111/j.2044-8341.1969.tb02089.x
Pilowsky I. Abnormal illness behaviour 1969
If his ideas were worth adopting and adapting one might have expected him to be given due credit.

It may be that there is a distinction between Michael Sharpe's concept of "dysfunctional cognitions and maladaptive behaviours" and Pilowsky's "abnormal illness behaviour" but, if there is, it is hard to spot. The problem may be that Pilowsky appears to take one right to the heart of general somatisation and also MUS, and may well have been quoted in other fields, by those with more obviously conflicting views-but that is speculation.

It would be surprising if Sharpe were unaware of Pilowsky. His early collaborator, Hawton, had a specific area of interest which coincided with that of Stengel.

For thirty years I have been wondering how, and where, these ideas, bearing no relevance to the reality of the condition, could have originated, so forgive me if I have been overlong and tedious. Any views, comments or corrections will be gratefully received. I will try to edit in links, at some stage, but that is more than enough for now.

 

So the predators have spotted our sickness behaviour and struck.

The predatory psychologists and psychiatrists have identified a group of people made vulnerable by their sickness and used us as a stepping stone in their empire building.

 

Just to add to the confusion I might mention the use of the term 'illness behaviour' as in currency in accident and emergency departments in the 1970s. I assume this was taken up from Pilowski. However the meaning was quite different.

It was entirely defined as a behaviour and as 'behaving ill when you are not'. It was used for people who came to A/E apparently seeking attention, as judged for instance by injecting themselves with dirty water during the night when they thought the nurses were not looking. It was closer to Munchausen syndrome. But because it was used by physicians there was no interpretation in terms of beliefs. We did not deign to speculate what beliefs the person might have. We were initially affronted by such behaviour but after a few months experience came to realise that it deserved sympathetic management - which usually involved absolutely no confrontation about beliefs of the sort the psychiatrists seemed to think was useful.

And even this definition covered a range of different scenarios. In some the behaviour did seem to be 'maladaptive'. In the first situation that does not really apply.

In fact I came to the conclusion that pretty much everyone who might come under this term was different. No general theory made any particular sense. The one thing that never made sense to me was the psychosomatic idea that people had physical symptoms because of beliefs. And I don't think the category is relevant to ME.

 

These other uses of the term are very instructive.

Here is another paywalled paper by Pilowski which allows one to see enough to get a flavour of the piece
https://link.springer.com/chapter/10.1007/978-1-4684-5257-0_31

One could almost obtain the impression that the concept of AIB was misunderstood and misapplied in ME and a certain embarrassment has led to the lack of further citations once this was realised. That would be expected to cause difficulty if the core of the BPS view of ME is dependent upon these terms. It is not entirely clear what is left once this goes.

We are rather hamstrung in lack of access to full documents.

 

It is easy to see how Freud's ideas of guilt and potty training caught on. I can imagine the psychiatrists having serious repressed feelings of guilt here, which they feel they need to act out by becoming famous psychiatrists in order to please their mothers.

 

I agree with you about people being different in these scenarios. It seems to me that psychiatry/ psychology became obsessed with creating " boxes" to slot people into, and then recommend CBT for everything. I worked with some brilliant neuropsychologists in the 1980s, who treated each patient as an individual. If they had been given a protocol, it would have been ignored.

 

Here is Pilowski's Illness Behaviour Questionnaire:
http colon slash slash psychology.okstate.edu/faculty/jgrice/psyc5314/ibq.pdf

 

The responses have triggered some more research and relooking at the sources.

Helpfully Sharpe cited as authority for his "dysfunctional cognitions and maladaptive behaviours" quote the Wessely, David, Butler, Chalder paper Management of chronic (post viral) fatigue syndrome
https://bjgp.org/content/bjgp/39/318/26.full.pdf
The quotation was clearly intended to accept these views as his own, but I do not think that he is primarily responsible for them.

So far as I can see this is not an exact quotation but an interpretation which can be legitimately drawn. This would make sense, as we know for sure that it is Wessely and David who have read Pilowsky (or at least read of him), of whom there is now no mention, although the "model", as outlined in that 1989 paper, is clearly driven by the concepts of "abnormal illness behaviour". There is now a passing reference to Mechanic, but only in relation to psychotherapy.

It is clear that something further had happened by 1991. By then David, in his paper
(Postviral Fatigue Syndrome and Psychiatry. British Medical Bulletin(1991) vol 47 no 4 pp966-988)
instead of writing of dysfunctional cognitions and maladaptive behaviours, was concerned about the "sick role" (Mayou R. Sick role, illness behaviour and coping. Br J Psychiatry 1984 144 320-322). This is a very different notion.

"This (offence taken by patients), I believe, arises out of a misunderstanding, namely that the sick role is assumed to imply an act of some kind. In fact it carries no pejorative undertones, instead it is intended to describe a socially sanctioned pattern of behaviour whereby an ill person, once designated the role of the patient, is exempted from certain duties ( eg work) and, in our society has entitlements (eg treatments, sickness benefit etc). This is clearly important for PVFS patients, who have rightly campaigned to have sickness allowances, a concrete token of the sick role. The responsibilities include the need to seek and comply with the prescribed treatment. Hence the sick role is neither a form of escape or coercion but a social contract entered into freely by a doctor and his or her patient."

It would be difficult to construct a model to justify CBT and GET out of this.

One might almost form the view that, having used one spurious model, abnormal illness behaviour (Pilowsky), (which cannot be admitted in public), to put in train a series of spurious treatments, David then wishes not to discuss that but instead changes tack and uses a different model, sickness role, to justify the requirement for the patient to comply with those treatments. I may of course be wrong. I would almost wish to be wrong.

 

They do have strange views. I wish I could have afforded these books in 1991, rather than having to wait for the second hand market. That was the other means of controlling the debate.

Is it purely coincidental that Wessely, White, David and Goldberg are all concerned with the benefits aspect of the illness in one form or another? I omit Sharpe. This is of course a matter of legitimate concern, but not necessarily for those supposedly researching the illness.

 

I should perhaps have explained my deliberate overuse of the term "spurious" in respect of illness models and treatment. It was a reaction to Eisenberg (1988) as quoted by Goldberg

Abnormal Illness Behaviour

Eisenberg has suggested that the chronic aftermath of acute infection with influenza represents a pattern of persistent illness behaviour precipitated by a disease episode in a group of psychologically vulnerable individuals. Once sanctioned by a doctor, the symptoms are more likely to persist; the persistence of the symptoms is mistaken for confirmation of the diagnosis. The diagnosis of chronic brucellosis is no longer fashionable, 30 years after its "discovery" it has become clear that "it is a spurious disease construct which legitimises and thereby perpetuates chronic illness behaviour." He goes on to say that there have been a number of successors such 'as chronic mononucleosis' and would no doubt include PVFS in its various guises. He considers them to be the somatic presentation of personal distress, "legitimised by a newly fashionable diagnosis".

It is possible to understand chronic fatigue in terms of chronic abnormal illness behaviour; cognitive and behavioural changes lead to symptom perpetuation...….

Psychiatric perspectives an overview. TO Woods DP Goldberg British Medical Bulletin (1991) vol 47 no 4 pp 908-918

The Eisenberg paper is Eisenberg L. The social construction of mental illness. Psychol Med. 1988, 18, 1-9

This quotation comes immediately before his references to the "sick role" and the powerful self -help group "the ME Society".

Sceptics amongst us, should there be any, might think that as Head of the Mental Health Illness Unit at the University of Manchester, shortly to take up a senior post at the Institute of Psychiatry, the evidential bar which he has set himself is not unduly taxing. Indeed it seems to be almost non-existent. "Eisenberg suggested.....He goes on to say.....He considers them to be" (and what's good enough for Eisenberg is good enough for ME).

The similarity of the language used by Goldberg and David and Wessely needs consideration. The possibilities appear to be

1) the similarities are coincidental and arrived at separately,

2) Wessely and David influenced Goldberg, or

3) Goldberg influenced Wesely and David.

The most likely explanation could, of course, be wrong. It does however seem strange that when David appears to be staging a managed retreat, and Wessely being seemingly aware of the need for caution, Goldberg is pressing strongly forward. A little less speculation and a little more evidence from him would have been helpful.

Finally, I will quote a further passage from near the end of his paper:

The disorder is kept going by disease conviction, by maladaptive beliefs about possibilities of improvement, and by abnormal illness behaviour in that exercise is avoided and the patient becomes "detrained". There may also be other secondary gains of the sick-role in individual cases.

No references are considered necessary apart from Sharpe's description, this issue, of "a vicious circle of events maintaining the disorder..."

Whatever happened to Pilowsky.

I had never heard of Goldberg until I came across this paper. That may merely prove how uninformed I am.

I almost forgot, I trust you recognise yourselves as belonging to "a group of psychologically vulnerable individuals".

 

You may be interested in
https://sci-hub.tw/https://doi.org/10.1007/978-1-4684-5257-0_31
and
https://sci-hub.tw/https://doi.org/10.1111/j.2044-8341.1969.tb02089.x
I haven't read them, just wanted to see if scihub would come through.

 

@BruceInOz thanks for that. The 1986 paper came through fine, but I don't seem to be able to get the 1969 one. I had the same difficulty with that when I tried before. The most likely explanation is my incompetence.

The 1986 paper makes it all sound very totalitarian-just accept your diagnosis and keep taking the medication.

 

Interesting! Following. Thanks for digging deeply @chrisb

 

Just got it, it all 5 pages. Might be worth trying again? Or PM me your email and I'll try send it.

 

In the past days, I read a bit more about the German "Action T4", which was the planned mass murder of sick, disabled people - or - how they called it - of "worthless life" (this included some healthy people, too). I read some stories about its victims' lives. I understood something, which seems trivial to me now, but since we (well, I) are grown-up in the belief our time is different and better to the past, it was new:

Sick people are a problem, because they can't contribute (e.g. work). They cost money but produce none.

When it comes to sick people, one sees that the human being is an animal: In the animal world, sick individuals often have to die, because either they are not able to find food, or the community doesn't have the means (e.g. not enough food during winter) to care for the animal. It's about survival. But there are exceptions even in the animal world.

I can imagine there were certainly times when a human community didn't have the resources to care for sick people, and where it was more important that the healthy ones survive.

But humans also have the skill to behave differently. Humanity has potential beyond "animal behavior", and I think society "agreed" to use that potential - that's their wish at least. It is viewed as "civilized" to care for the sick.

I think there is a conflict between human's "animal nature" and "civilized" values ("reptilian brain vs. neocortex" -> "Thinking fast, thinking slow"). Even today, where there are plenty of resources in our part of the world, and where it's only about profit maximization, this can be seen clearly in our experiences with applying for disability benefits.

I think psychiatry gives room for that ambivalence. It looks civilized to the outside, it looks like it keeps the values of humanism. But it actually gives room to the "animal instinct" which says chronic sick people are a burden and endanger survival. They give a "justfication" why sick people are worthless.

The initiators behind "T4" (Hitler signed it because he shared the doctors' view of many years that sick people were useless, and there was a war) knew it is disgusting to kill sick and disabled people, including little children, so they made it secretly. (By the way, the KZs were mostly outside of Germany so that the population wouldn't witness that too directly.) But it couldn't be kept secret in the end.

My impression is the concept behind "false illness beliefs" and "sick behavior" or the accusation to fake a disease in order to "profit" from its "advantages" - like it is said about people with ME by some with influence - is the same. People with ME are viewed as worthless, and there's somehow the need in some (e.g. Wessely, White...) to reinforce that. Even if those people didn't view sick people as worthless, that's the message they send and that's the picture they draw for others to see. This has to ring in others' ears (namely those that agree that sick people are worthless).

There was a British politician who had become sick and after experiencing the treatment by authorities, he said this is a form of "Euthanasia". That is not very exaggerated. The principle is the same: Sick people are viewed as worthless. (Authorities definitely let me know that I am worthless and they use all means to make it a fact.) By withholding financial help, this is endangering the existence because in the Western world, people are 100% dependent on money. And this is widely accepted. I can't say if it's instinctive or cultural. (e.g. upbringing)

The really disgusting thing to me is: We have enough resources to care for the sick people - for all sick people - but society/politics chooses not to.

 

Thanks @BruceInOz and @ladycatlover . That other paper had come through by the time I next checked the tab. I gave up on it too quickly. The implications of these papers will take a little digesting.

 

@Inara Your post is interesting and addresses some of the economic and financial issues raised in the Eisenberg paper upon which Goldberg relies so heavily in the formulation of his ideas of abnormal illness behaviour- to the exclusion of any other source of authority. Here is the link to that paper. It should be read by all, not for any intrinsic merit but because it seems to be part of the problem we face.
https://www.cambridge.org/core/services/aop-cambridge-core/content/view/S0033291700001823

It seems significant that the only relevant paper discussed by Eisenberg is Imboden. It is all "trust me I'm a professor, and here's what I profess".

I am not sure that anyone used to presenting their views in a more adversarial environment would have relied, in trying to persuade that an illness is not regarded as mental, so heavily on a paper entitled "The social construction of mental illness", nor one containing the full, as opposed to the abbreviated remark, "Whatever the cause of this symptom pattern, EBV virus is an unlikely bet. If some cases indeed prove to be due to an as yet undiscovered virus, many more, in my estimation, represent the somatisation of personal distress, legitimised by a newly fashionable diagnosis." Page 3. He is discussing cases falling within the Buchwald et al (1987) qnd the Holmes et al (1987) papers.

I begin to suspect that professors in certain fields do not expect their sources to be read critically, if, indeed, at all. I begin to regard Goldberg as not a serious, (in the sense that he is not serious about this illness) but, nevertheless, a highly influential player in this debate. Given his apparent concern for matters financial, it would be interesting to know whether he held any advisory posts with the DHSS or DWP.

I am still trying to analyse and make sense of the Pilowsky papers and will comment on them shortly. There are a number of intertwined matters.

 

I think his position is different from that found in Nazi Germany: Then, "psychiatric diagnoses" were used as a label for "worthless life", like a sign. They seem to have viewed mental illnesses as very real; they were viewed as inherited.
To be honest, my impression is that principle is still present.

Nurses in Grafeneck, for instance, afterwards said there were regularly people that looked healthy. So there were other reasons for killing them. But the "label" identified them. If you go through the lists, the following diagnoses were very common: madness (Irrheit), imbecility (Schwachsinn), idiocy (Idiotie), manic depression, schizophrenia. Epilepsy is also found, of course, but less often.

Eisenberg's view seems to be contra-Popper: While Popper's opinion was science is the process of getting closer and closer to reality, for which objective measures must be used - and thus, we will be able to understand reality more and more - Eisenberg seems to have the view all science is imagination. I think this view can also be used as a carte blanche. It's also deeply depressing: In his view, it seems, reality can never be understood because it is our imagination that we always project onto it. Of course this is correct if no objective means are used. Maybe as a psychiatrist he must have this view because objectivity is an alien concept for them.

Of course, our system of numbers and measures and equations are constructs, as is language. Reality doesn't care if these constructs mirror it correctly. You can ask if what we measure is really reality. To say they are imagination is something different.

Apart from these constructs of measurement&Co., there is the observation. Of course, by using language and the brain, again we can't depict reality exactly. But there is one fact: We observe reality in that moment.

If scientific concepts are imagination, then our entire perception of reality is imagination. This has to be incorrect, and I wonder if life is possible with that view.

Engelberg is a bit contradictory - on the one hand he argues that scientific concepts are creations of imaginations, and that illnesses have a trajectory that is influenced by beliefs. On the other hand he acknowledges there really exist diseases, i.e. an objective reality.

When re-reading his words again and again, my impression is he is writing solely from a psychiatrist's standpoint, not from someone who wants to describe observations as accurately as possible. He refers to the paradox in human sciences, and here especially to human behavior.

It is trivial that human beings and the cultural context influence behavior. We also find something like this in quantum mechanics (Schroedinger's cat, which is a thought experiment). Indeed, this bias plus subjectivity is the problem, which will lead to an imaginary reality, something ME advocates and scientists try to make understand the BPS group. Therefore, natural sciences agreed to use objective constructs that are normalized. Sadly, although Engelberg seemed to have pointed out this problem, it is widely ignored in his field, especially by those that cite him.

In my view, there are several weaknesses in Engelberg's argumentation, including his own bias and inability to look further. It gives one possible explanation why we are facing a multitude of problems regarding the BPS model.