"Abnormal illness behaviour" and the missing citations.

IMO, calling this "sophistry" is too kind.
( self edited to remove more... colorful terminology)

from that 1988 editorial -

"CONCLUSION
To recognize that scientific theories are inventions of the imagination is to enhance rather than to diminish their grandeur. It is, however, their very success in introducing order into the chaos of appearance that makes it easy to mistake them for reality itself. For the clinician as scientist, the problem is compounded: the more he is believed, the more his prophecies become self-fulfilling. Accounts of disease, through the expectations they arouse, impact on the course of disease. If professional ideology influences society, it also profoundly reflects the values of the society in which it is embedded.

There is no escaping the paradox except to recognize it as such. The more we keep in mind that individuals no less intelligent than ourselves, in other times and at other places, have come to very different but equally coherent descriptions of the world of things and of people, the more we can correct for the effect of where we stand on what we see. What distinguishes one description of the universe from another is not any final correspondence with the real chains of nature but its efficacy for human purposes. The clinician who understands that he is a participant in, as well as an observer of, the drama of health and sickness will be better able to fashion new remedies for old problems.

This is far from the stance of cultural relativism. To acknowledge that' magical' explanations of disease are no less internally coherent than ' scientific' ones in no way denies the far greater power of the latter for prevention and cure. It does emphasize that theories of behaviour are not simply statements about the connections between 'facts', they are statements which change 'facts' and have profound moral implications for the role of human agency in the cause, persistence and cure of mental disorders. L. EISENBERG"

 

I agree, but it seems that this is the basis of the rationale for the UK version of CFS. Goldberg seems to have been a major, albeit unacknowledged, influence and he quoted this work of social philosophy as his reasoning. The only potentially relevant bit of science to come out of all this is the Imboden, Canter Cluff paper on recovery from influenza. I think we are going to have to have a serious look at that. One can see plenty of possible grounds for objection.

I think it astonishing that Goldberg would have apparently endorsed a 1988 paper saying that the majority of cases of CFS are due to the somatisation of personal distress and then to have nothing to say against the loosening of the criteria further with the Oxford conference. His major interest seems to have been describing the condition in terms of anxiety and depression. It all seems even more odd than I expected.

For Goldberg to quote, and rely so heavily on, Eisenberg in his 1991 paper suggests the paucity of any scientific evidence.

 

I am reading the chapter "Inherited mental illnesses and psychopathies" of "Grundriß der menschlichen Erblichkeitslehre und Rassenhygiene" (Foundation of the human doctrine of inheritance and hygiene of races) by Baur, Fischer, Lenz (1921), which reminded me strongly of many things Wessely&Co say (or said).

https://archive.org/stream/BaurErwi...ygiene - Band 1 (1921, 569 S., Scan)_djvu.txt

P. 232:

This reminds me of "psychosomatic disorders".

The difference between hysteria und simulation is the unconsciousness of the behavior. The author goes on with examples of secondary gains from the imitated illness. The basis are inherited abnormal wishes and desires, which not only leads to imitated diseases, but "much more often, it simply leads to repression of unpleasant ideas or memories from the consciousness".

 

That is obviously the thinking behind MUS which they are desperately trying to keep from the public.

 

Maybe they were people who just didn't want to go home, for whatever reason. When I spent a short time in hospital in the early 80s I was quite happy there because they had a better telly than ours (which was black and white and only got BBC Wales and HTV Wales unless you stood next to it waving an arial around, so my own colour telly mounted on the wall with a remote control was luxury).

Anyway, if that's the case then PWME have the opposite of whatever your 1970s patients had, because they liked being in hospital and didn't what to go home, whereas we spend all our time at home and don't go near hospitals unless we absolutely have to.

 

A very difficult thread to follow @chrisb, but I will do my best. The modern avoidance with the term "illness behavior" seems reasonable because as @Trish pointed out, it's quite easy to debate what is/is not illness behavior in a particular condition. For example, the partial list of variables

And the increasing evidence that illness behavior is in part a very biological response, at least some of it varying w/ cytokine activity. In that context, identifying what is "abnormal" is probably a task beyond the kind of work he or the other BPSers are interested or capable of undertaking.

So it may be that those terms, "dysfunctional cognitions and maladaptive behaviours", have less baggage for him to throw around. The first definition is very simple, sort of illness dysmorphia and seems to me quite common. I think of a friend obsessing over a common health complaint. When does this become a disease? But I think it's important because this is real, abberant behavior that I have seen displayed and that is important because in a sea of meaningless words, it's a link to a clinical picture where a clinician can be frustrated - which is not lost in either definition.

Dysfunctional cognitions and maladaptive behaviors are much easier terms in that they are satisfied upon the diagnosis of somatization, but are also the diagnositic criteria of somitization. E.g., if a person doesn't have another disease but is sick they will therefore have dysfunctional cognition (believing they are more sick then they are) and maladaptive behaviors (behaving like they are sick). It's like a insta-effortless wrapped diagnosis.

I think stepping back, the BPS criteria is sort of always consists of the two key somitization criteria but they various definition are morphing and changing through time. Maybe with additional emphasis on behavioral patterns (disability, missing work, doctor visits), though they could be covered by maladaptive behaviors I guess.

 

I have deleted a post which I made yesterday. In looking for further information to corroborate the statements it appears that there may have been a partial error, due to an artefact of the internet. I will deal with that later. In the meantime I repeat the apologies regarding the points to which I have not responded. As they say oop north, "It's ME brain, doc".

There is first an important point to correct on the origins of the "dysfunctional cognitions" and "maladaptive behaviours" terms which Sharpe attributed to the 1989 paper by Wessely, David, Butler and Chalder. This appears to have been a slip of the metaphorical pen. These things happen. The terms, although possibly implied and discernible within that text are not expressly stated. There is however express use of the terms, with a description of their intended use, in the paper Cognitive Behavioural Management of the Post-viral Fatigue Syndrome, Wessely, Butler, Chalder, David in Post-viral Fatigue syndrome (Myalgic Encephalomyelitis) eds Jenkins and Mowbray 1991@p311.

Dysfunctional cognitions are not sufficient to account for prolonged disability; their importance is linked to the development of maladaptive behavioural patterns. Simple operant conditioning shows that it is natural to avoid situations associated with distress. However as the duration of illness lengthens, the reasons for this distress change, and avoidant behaviour no longer serves such a useful purpose.

Papers referred to are Beck 1976 on the importance of cognitive errors in depression and anxiety, and Riley at al 1988 on pain, to support the analogy that cognitive factors (in this case beliefs about health and illness) play an important part in perpetuating disability.

There is then further discussion of pain before We have extended this parallel to fatigue syndromes.

All seems to be conjecture and this is the justification for CBT and GET.

So, although Goldberg states in the 1991 paper that

It is possible to understand chronic fatigue in terms of chronic abnormal illness behaviour; chronic and behavioural changes lead to symptom perpetuation. The obvious advantage of such an understanding is that it encompasses the disciplines of both psychiatry and physical medicine by recognising the continual interplay between psychological and organic factors which occur in any illness, and suggests a multifactorial approach to treatment

there is no mention of Pilowsky in either text. This is surprising as in the same book as that in which the Wessely paper appears other psychiatrists Rachel Jenkins and Colette Ray, in their respective contributions, have no problems with offering appropriate analyses of the concept of abnormal illness behaviour as it relates to PVFS. It does rather appear as though once the damage was done by referring to Pilowsky in the 1988 paper attempts have been made to disassociate PVFS from AIB. This is perhaps unsurprising. It would have stirred up further debate. Pilowsky somewhere refers to a debate in, I think, 1985 in which he took pleasure in it having been said that his was a dangerous idea.

It should not be thought that Goldberg wished to disassociate himself entirely from Pilowsky, or that the idea has gone away. Pilowsky published a book Abnormal Illness Behaviour in 1997. The forward was written by Goldberg. This according to Amazon is the blurb from the back cover

Abnormal Illness Behaviour describes not only the problems of patients with bodily symptoms for which no adequate organic cause can be found, but also those who deny the presence of disease which is obvious to others. The former, regarded as manifesting ?somatisation? but often labelled pejoratively as hypochondriacs, hysterics and even malingerers, have a different perception of their health problems to that of the doctor and this often leads to misunderstanding and unhelpful emotional reactions in medical professionals interacting with these patients. There is growing interest in the phenomenon of ?somatisation? and its causes, which now forms an important research field within the disciplines of psychosomatic medicine, consultation?liaison (?general hospital?) psychiatry, community psychiatry and general practice (primary care medicine). This book describes the nature of various forms of abnormal illness behaviour from a clinical perspective. It provides an historical and theoretical background and a general introduction to the early recognition and management of abnormal illness behaviour. It describes for those in the medical, nursing and health care professions the skills needed to identify abnormal illness behaviour in its various manifestations, how to offer appropriate care and when to refer patients for specialised psychiatric care. Written by an author well known for his introduction of the term ?abnormal illness behaviour? and his research in the fields of hypochondriasis, psychiatric aspects of pain and the development and application of the ?illness behaviour questionnaire?, this book will be of immense value to general practitioners, physicians, surgeons, neurologists, psychiatrists and clinical psychologists, physiotherapists, occupational therapists, social workers and anaesthetists associated with pain clinics.

My suggestion is that these views were formative in creating the model for ME, but were deemed unsuitable to be made public. Too close an association with talk of hypochondriasis and somatisation would have given the game a way.

The error I may have made yesterday was in believing that this book was first published in 1988. I saw something suggesting that, but I believe it to have been an error.

 

Further on the question of AIB in ME this 1995 paper comparing ME and MS provides interesting findings

www.bmj.com/content/311/6996/15
Abnormal” illness behaviour in chronic fatigue syndrome and multiple sclerosis
BMJ 1995; 311

1. Peter Trigwell, senior registrar in psychiatrya,
2. Simon Hatcher, lecturer in psychiatryb,
3. Michael Johnson, consultant neurologistc,
4. Philip Stanley, consultant in infectious diseasesd,
5. Allan House, consultant in liaison psychiatry

Our results confirm that patients with chronic fatigue syndrome have high levels of disease conviction and general hypochondriasis and low levels of psychological versus somatic concern. However, we also found that patients with multiple sclerosis have these same abnormalities--with a virtually identical illness behaviour profile. It is therefore wrong to infer that chronic fatigue syndrome is a manifestation of abnormal illness behaviour simply because patients have raised scores on the illness behaviour questionnaire. Zonderman et al voiced concern about the validity of the illness behaviour questionnaire, doubting whether it can differentiate appropriate responses to chronic pain and illness from inappropriate responses or abnormal illness behaviour.24

On the other hand, the similarity of illness behaviour profiles in chronic fatigue syndrome and multiple sclerosis cannot be taken as implying that chronic fatigue syndrome does not represent a form of abnormal illness behaviour. Though the final profile of illness behaviours and attitudes was similar in the two conditions, the chronic fatigue and multiple sclerosis patients may have reached their conclusions for quite different reasons

It does seem strange that whilst others were following up these ideas with research, those who thought the idea warranted a new approach to PVFS cannot bring themselves to mention either the idea or its originator.

 

I have always found the intensity with which the psychosocial researchers focus on how weird and strange and abnormal it is for ME patients to be so categorical about having a disease when one of the big problems in medicine is people not taking seriously the advice of physicians and continuing in behavior that will cause them long-term damage. Now THAT is an unhelpful illness belief.

Someone being told they have diabetes who just keeps with a diet of junk food is going to have a bad time. It's important for someone with a serious medical condition to take it seriously and accept that they need to adapt their life to it. It's so weird of them to turn this against us and make it a bad thing that we are taking our health problems seriously, as any rational person who wants to continue living should do.

Because ultimately this is the correct framing: you will observe the same behavior in any cohort with MS, cancer, ALS or any other disease. Of course these patients understand there is something wrong with their body and will insist so if someone tries to gaslight them for it.

You can train someone to be a medical professional but apparently you can't teach common sense to someone who doesn't have the capacity for it.

 

I suspect that a part of the reason for the withdrawal from AIB was the onus which it places upon the doctor to provide the correct diagnosis.

This definition places a considerable responsibility on the doctor and has obvious implications for medical education and peer review. It is a definition which emphasizes that the diagnosis of AlB cannot be made definitively unless the doctor has given the patient an "adequate" explanation of what he/she regards the situation to be and that the patient rejects it. As Singh and others (1981) have pointed out, the physician may discharge his/her role in a distinctly abnormal manner. This must be considered along with any notion of "abnormal" illness behaviour

 

Wessely believes that “There lies at the heart of CFS, not a virus or immune disorder, but a distortion of the doctor-patient relationship” (Chronic fatigue syndrome: an update. Anthony J Cleare Simon C Wessely. Update 14th August 1996:61-69).

I have just encountered this quotation referred to in a briefing note by Malcolm Hooper. This is interesting because it seems to precisely describe the situation which arises with the concept of AIB.

It rather begins to look as though this is a "case of the dog that didn't bark", and there are worrying implications.

Goldberg's paper directly associates the ideas of cognitive and behavioural changes, leading to symptom perpetuation, with chronic abnormal illness behaviour. This terminology is close enough to that of the dysfunctional cognitions and maladaptive behaviours discussed by Wessely et al and by Sharpe to suggest that if they claim to be intending something different they need to make clear how they distinguish their concept from that of Goldberg, which appears, in turn, to be that of Pilowsky.

This is important because the treatments of CBT and GET are specifically, in the earliest papers on the subject, based on the idea that they deal with dysfunctional cognitions and maladaptive behaviour, hence, arguably, AIB.

It would be difficult to believe that Goldberg's discussion of AIB, without revealing the sources, and Wessely's discussion of hysteria, without mention of the earlier comment that he considered the concept superceded by AIB, as anything other than deliberate.

Unless someone can point to references in the literature disclosing links to AIB, there seems to have been a failure to disclose, for whatever reason, the literature surrounding part of the basis of the standard treatments recommended by NICE.

One might make the case that there has been a failure to obtain informed consent for the treatments,

It would be not unreasonable to request answers to why this occurred. Someone must know.

 

I find this thread very interesting, informative and helpful in understanding the Wessely et al.-history behind ME. It is very detailed. I agree with @Trish Keith Geraghty might be interested or know more.

 

@Inara I am glad you find it interesting. There is something here that needs explaining. The difficulty is that all we have to go on are the shadows on the wall of the cave. There must be people outside the magic circle who knew what was going on. I cannot have been the first to note these connections, but it is possible that the Goldberg paper is rather obscure and without that I would have seen nothing unusual about the claim in the David et al paper.

Whether or not KG would be interested I do not know.

 

Do the authors still conclude that illness beliefs play a role in CFS?

Do the authors suggest that illness beliefs play a role in many diseases?

 

I would not have thought that those in Leeds at that time had much truck with the idea of illness beliefs. I once spoke, socially, to a consultant liaison psychiatrist from Leeds who assured me that he had written an early paper on the biological nature of the condition. I know nothing of any subsequent work by this group.

 

@chrisb the parallels to Neurasthenia and hysteria are striking, including the sociopolitical surroundings of the time. For instance, Baur et al. lectured about their eugenics long before their book was published in 1921. The interest wasn't at its peak yet, but when it was Lehmann's saw a great opportunity to make money with the book, and it sold well. This only shows that the interest in eugenics was big at the time of publishment, which led to a broad acceptance of the ideas, which led to the well-known rest.

The steps are "hysteria/neurasthenia - abnormal illness behavior/unhelpful illness beliefs - somatoform disorder/conversion disorder - functional somatic symptoms (FSS)/MUS". It's in fact all the same.

Today, psychosomatic concepts are widely accepted and instead of viewing psychosomatics as questionable from a scientific/factual point, you're the weirdo if you question psychosomatic concepts.

I agree this didn't develop per chance. I argue the motivation behind it, now and then, are sociopolito-economical factors, like the need of a part of the population to discriminate (e.g. the feeling to be genetically superb, fear that one's taxes are wasted on 'simulants' and lazies), room for wounded soldiers, profit maximization.

 

So the results didn't fit their mental framework, but one just had to say that these results didn't mean what they mean, and here we are, no changes to the conclusion. (And quickly sweep the question of the validity of a tool that says that patients suffering a "recognised organic disease" are hypocondriacs, under the carpet)

 

That is an interesting hypothesis, that the success of the phsychosomatic medicine is, in part, socio-economic. I'm inclined after reading many threads on Reddit, that it is part of the simple need to provide any diagnostic label. This is what I have read so many medical professionals say - and even Pilowski says

What is clearer to me from reading this thread is how important the physician experience is to the core concepts of AIB. Can he diagnoses correctly. Can he rule out correctly. Can he provide the patient help, explanations, etc. Does he think the behavior is normal or not? Does he think it's excessive? It is less about the abstract idea that thoughts become diseases. AIB seems to be designed retroactively to "explain" frustrating patient experiences. Goldberg let's it slip in the forward

But the most shocking example is that Wessely quote

Wow! At the heart not even a psychological disorder but a doctor-patient disorder! The doctor that believes the patient ill perpetuates the disorder. And such the removal from AIB to "dysfunctional cognitions and abnormal illness behaviors" to make it even easier for the physician by

1) removing the onerous diagnostic process of AIB, even Pilowsky calls it "considerable responsibility"
2) remove any association w/ IB, now being understood as biologic and complex
3) streamline it w/ current definitions of somatization
4) AIB seems to require the patient see a doctor, seek medical care etc. But BPS must accomodate for the ME/CFS patients who have receive minor medical care.
5) probably more

The diagnostic problem may have some roots in the economic relationship between the doctor & patient. A diagnosis of I don't know is a failed service. It shouldn't be, but it feels like that on some level. The patient feels unsatisified and so does the doctor, even if it's the truth. But it's true often these definitions seems to have an undercurrent about benefits. Obviously wrapped around illness reinforcing behavior talk(Pilowsky conflates hysteria w/ malingering but David is clear that it is seeking and recieiving the benefits that perpetuates the illness). I won't lie, reading the David stuff about benefits was shocking, and I had to wonder about conflicts of interest.