Illness Behaviour - a multidisciplinary approach McHugh and Vallis (EDIT)1986

This book represents the papers delivered at the international conference on Illness Behavior held in Toronto in 1985. It should not be considered out of date. It was reprinted in 2013 and so it must be assumed that it is still used either for teaching material or by practitioners.
Illness Behavior: A Multidisciplinary Model - Sean McHugh, T. Michael Vallis - Google Books

This explains almost everything you needed to know about the biopsychosocial model and its application to ME.

Its date explains the apparent discovery by Strauss that he was wasting his time as the condition was psychiatric in nature.

It shows that what appeared to be a passing reference by Eisenberg to Imboden Canter and Cluff in his 1987 lecture was based on long standing beliefs , in which he had worked with Kleinman - explaining the latter's presence as chairman of the Ciba conference.

It shows an early approach to CBT as treatment, explaining how both Wessely and Sharpe came to be developing similar treatments at the same time.

It puts Izzy Pelowski delivering a paper on Abnormal Illness Behaviour immediately after a paper by Eisenberg, and thus explaining the reference to Pilowski in the David Wessely Pelosi paper. I never did find any further reference to him and did not understand why not.

And more, so much more. Read and enjoy, or not.

Preumably this now lies behind all the MUS thinking.

I do not know why I have never found this before. Has anyone?

 

It might also explain why the CDC, as well as the NIH, failed to take the condition seiously, or provide funding. And it no doubt accounts for why Goldberg appeared in reverence of Eisenberg's utterances in his one foray into print on the subject of PVFS.

 

One feature of this that is worth enquiring into is the status of the individuals involved. Apart from Eisenberg and Kleinman there was Leighton Cluff reminding the world of the existence of his beliefs with papers in 1979 and 1991. Then there was Goldberg in the UK. These all look to be consummate committee men. It would be interesting to know any advisory posts which they held. The problem with holding Wessely and Sharpe responsible for every disaster was that at the time they were very junior and in no position to influence outcomes. It has always seemed that there must have been an additional administrative layer operating behind the curtain.

 

i do not blame wessley or sharp or any others involved directly with this line of research i do blame the vested financial and political meddling that financed all the tripe they have published mostly raising the old tropes of undeserving sick and the nonsense of secondary gains there are way to many gullible people to busy with their own lives problems to even notice the wilful deception in these papers or the political othering of the chronically ill .

 

As far as the UK is concerned it seems significant that there were only two contributors at the conference: Richard Mayou, from the Dept of Psychiatry, Oxford, and George Brown from Dept of Social Policy and Social Science, Royal Holloway.

Issy Pilowsky was by this time in Adelaide. There was was one contributor from Israel, eleven from Canada, and twenty odd from the US. This is not definitive as I do not yet have access to the "A's".

Judging fromthe number of Social policy and economists present I think I have prviouly misunderstood the biopsychosocial aspects of illness as applicable to ME, thinking it was supposed to be about aetiology. Aetiology is not the concern. The concern is management and health costs.

Having introduced chronic brucellosis to this largely North American audience in 1985, Eisenberg then re-presented it to UK psychiatrists in 1987 in terms of diagnosis of psychiatric illness or behavioural disorder.

It is usful to reconsider what Goldberg wrote in 1991 Sci-Hub | Psychiatric perspectives: An overview. British Medical Bulletin, 47(4), 908–918 | 10.1093/oxfordjournals.bmb.a072520 (sci-hub.se)

[Abnormal illness behaviour

Eisenberg11 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, (sic) 30 years after its 'discovery' it has become clear that 'it is a spurious disease construct which legitimizes 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. 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 multi-factorial approach to treatment.

The recognition of PVFS by the Department of Health can be viewed as an attempt to legitimise the sick role, and thus regard the chronic illness behaviour manifested by the patients within the ambit of 'normal' illness behaviour. Furthermore, the patients' illness behaviour is likely to be perpetuated by adhering strictly to the advice given by the powerful self-help group, the 'M.E. Society', which advocates total rest.]

It is not clear why it should have been thought necessary to attribute these views to Eisenberg if he, himself, did not choose to express them. One might almost think there were doubts about Eisenberg's familiarity with the literature on ME, epidemic neuromyasthenia and PVFS, of which, by 1987, there was already much.

This then can be seen as blatant lobbying for PVFS to be seen as "Abnormal illness behaviour" rather than "normal illness behaviour". It should not be forgotten that Eisenberg wrote the forward to Goldberg's book and that Goldberg wrote the forward to Pilowsky's book on Abnormal Illness Behaviour.

The cynical might almost think that the quoting only of the 1987 lecture, and omission of reference to the 1985 one is a laundering of the origins of the comments

 

For any unfamiliar with the name Richard Mayou it transpires that he co-authored, With Gelder and Geddes, the Oxford textbook of psychiatry which is apparently a core text for students. His paper at the conference was "the use of illness behaviour concepts in psychiatry".

EDIT this amazon linkIllness Behavior: A Multidisciplinary Model: Amazon.co.uk: McHugh, Sean, Vallis, T. Michael: 9780306424861: Books shows a part of the paper, which looks quite important to us. This should have formed part of many discussions which we have held, but it is difficult of access.

 

Eg, the MRC decision to fund BPS and not biomedical research from the early '90s.

I've attached a generally favourable review from Contemporary Sociology. It pointed out the naivety of the conference's belief that there is a monolithic "biomedical" position in need of correction. It also criticises the volume's "rhetoric of persuasion".

 

In this paper from Barry Blackman and Mary Gutman of University of Wisconsin - The management of chronic illnss behaviour- one can see an early form of GET:

Specific strategies to facilitate perception of control include the following. First the role of physical rehabilitation is crucial and is given early emphasis especiallyin chronic conditions. Disuse atrophy, fatigue and lack of of stamina are the natural consequences of fear of disease or injury that accompany sick role behaviour. A progressive stepwise program of physical retraining unders skilled medical supervision should be initiated with goals that are set to coincide with whateveractivity level is required to restore the individual's independence at workor in the home.

There is also much in the paper recognisable as the contents of the CBT program

 

It is interesting to see the review, especially as it is in a sociology rather than a medical context. The approach in the book seems simplistic. There may well be cases appropriate for treating as abnormal illness behaviour, and perhaps the proffered treatments are relevant to them. Who knows? The difficulty is in distinguishing between cases and determining what is normal and what abnormal. Mayou seems to recognise this. I did not spot any particular problem with his paper.

I have now acquired the book, second hand, whilst it was affordable. I shall try not to bore you with it. Not too much anyway.

Starting at the beginning it seems that the first conference was held in Adelaide in 1984. That must almost certainly mean that the driver for this was Pilowsky - he who was thought by David, Wessely and Pelosi to show the way forward- at least until they forgot about him.

There was a special mention for Arthur Kleinman and David Mechanic who provided much advice and encouragement in the planning of the second international conference. It makes one wonder who selected and invited the participants to the Ciba conference.

 

The "sick role" was a sociological construct, and this conference seems located in the "health sciences", ie, the general application of social science to medicine. Mechanic et al were early exponents.

Part of the BPS failure in ME comes from substituting social psychology (eg "locus of control" theory) and soft outcomes (amateurish fatigue scales etc) for hard outcomes (strength, stamina) or even hard social outcomes (return to work, school etc). But they had nothing else to offer, apart from their overweening confidence.

 

Yes. I was quite surprised to find that mechanic was a professor of sociology. His first paper from 1960 or whenever it was seems quite reasonable for what it purported to be. The problems seem to me to have arisen with Pilowsky's "abnormal illness behaviour" which seemed to be a reworking of hysteria, hypochondria and malingering and covered anyone who disgreed with their doctor over the diagnosis.

I feel we may have been sold a false prospectus. The main focus of this BPS approach seems not to treat people as patients to be healed, but as problems to be managed.

Thinking about this I have been wondering what it was that created the need for these conferences. In the UK we had available the diagnoses of ME and PVFS for sporadic cases, although many cases would no doubt have been diagnosed as anxiety and depression. One gets the impression that there was nothing except the psychiatric diagnoses available in the US. The planning for the first conference must have begun in 1982/83. It makes one wonder whether there was an upsurge of cases in the US in the years before that. In her interview with @ScottTriGuy Hilary Johnson spoke of cases in California in 1979/80ish. Were some seeing these cases in terms of illness behaviour?

I have been trying not to look too closely at Kleinman's outpourings on illness meaning and neurasthenia. No doubt I shall have to get round to them. Working on the hypothesis that the main drivers for introducing illness behaviour into ME it is interesting to note that I have seen no evidence of any of them studying an ME or PVFS type cohort. Kleinman seems to have thought in terms of neurasthenia, especially in China. Goldberg was all about anxiety and depression. Eisenberg says he diagnosed people with chronic brucellosis thirty years previously. It's anybodies' guess who Pilowsky was seeing.

It is interesting to recall how the idea of neurasthenia appared in the UK in about 1989 introduced by the usual suspects. These were thought to be novel reintroductions of old ideas. It seems that Kleinman and Eisenberg were writing about it in the 1970s.

 

There is, in Eisenberg's paper "Are psychiatric disorders real" in the book, an important sentence making clear his opinion of the chronic illness arising after brucellosis. These are the views which were apparentlylater incorporated into CFS. Referring also to "miner's asthma" he says:

The persistent distress of post-brucella somatization is not mitigated by the redefinition of chronic brucellosis. However the new conceptions of these disorders have had equally real consequences. In the case of black lung, the change has led to improved, if still inadequate, mine safety standards and to federal benefits for those unable to work because of pulmonary dysfunction. In the case of brucellosis, it has shifted the focus of medical attention.

Now we know where we stand.

 

These paaragraphs from Illness behaviour, operationaization of the biopsychosocial model by McHugh and Vallis seem significant

The process by which nonspecific symptoms are erroneously labelled as disease has been called pseudo-disease (Helman 1985) diseasization (Kleinman see Helman 1985) or medicalisation (Cott, Zola this volume). Specifically these terms refer to the process whereby disease attributes are applied to problems which do not have an organic basis and to which medicine is looked to for a "cure". As Cott (this volume) discusses, the reason why some of these problems are presented to physicians is obvious, since on some occasions the symptoms are indicative of disease processes (eg fatigue). However, when these symptoms are treated as if there was a disease basis (eg with medications), when in fact they represent some form of psychological distress or dysfunctional behaviour, then Cott would argue that physicians are practising inappropriate "medicalisation".

Inappropriate medicalisation is not benign as it is often associated with unnecessary medical investigations, expensive and even harmful treatments, and confusion between what is disease and illness (Cott this volume). Another example of medicalization occurs when a constellation of common complaints is classified as a "syndrome", with the untested and often unsubstantiated implication that there is an underlying biological disturbance causing the symptoms. Non-organic pelvic pain, non cardiac/non gastrointestinal chest pain, irritable bowel syndrome or historically archaic conditions such as chronic brucellosis (Eisenberg this volume) illustrate this phenomenon. What is most striking in these syndromes is the associated chronic illness behaviour (Blackwell and Gutman this volume) which challenges the biomedical approach that leads to such reification. Within the behavioural medicine literature, there is increasing evidence to suggest that alternative approaches, incorporating educative strategies, might be preferable and more efficacious than biomedical treatment of hypothetical "diseases" (Bradley and Kay 1985).

I think it astonishing that we, or presumably most of us, were unaware of this literature underlying the BPS approach.

 

It's not a fact that they represent "psychological distress or dysfunctional behaviour".

 

I'm only quoting the book. Don't shoot the messenger. Some things seem to be known a priori.

 

@chrisb I think you'd enjoy Brannigan The rise and fall of social psychology (2004) which demonstrates that most of the received wisdom - Milgram, Hawthorne, Pygmalion etc - is actually unvalidated myth. It doesn't include biosoclal psychology but Myslobodsky The fallacy of mother's wisdom: A critical perspective on health psychology (2004) covers that house of cards.

 

@Mike Dean Thanks. I shall look into those, though I may already have aa lifetime's reading to cope with.

I am cross. It probably shows. A false narrative, or a number of false narratives, have been allowed to stand, hindering access to fundamental resources which would have enabled criticism. As they say, a half truth is a whole lie.

There is even some question over the Cognitive Behavioural Model. Apparently that was something slightly different to the Illness Behaviour Model. The similarities and distinctions as yet elude me. Yet Wessely and Sharpe were supposed to have created it all. Perhaps they did. It may be pure chance. I hope they bought a lottery ticket that week.

 

I suppose they distinguish between what might be seen as idiosyncratic behaviour on the one hand and visible manifestations of something "physical" on the other. Perhaps a rash is thought unlikely to result from hypochondriasis or malingering, not to mention hysteria.

 

I simply cannot express how angry this makes me and it has nothing to do with ME.

I had someone very close to me, the person I felt closest to in the world at the time, take their ongoing symptoms lightly in the mistaken belief that although it hurt a fair bit there was no major underlying problem.

Then they dropped dead. The 32nd anniversary of their death was just last week. They'd be knocking on a bit but there's no reason to suppose they wouldn't still be around today if only they hadn't been taught to just ignore/live with their symptoms.