Wednesday, January 25, 2012

Douglas Fraser's letter to two high-profile members of The House of Lords

Douglas Fraser, a former professional violinist but now severely affected by ME:

Dear Lady Grey-Thompson and Lady Mar,

Thank you for your hard work in the debate around the Personal Independence Payment and other matters.

I am writing because of my concerns over a paper that I believe was circulated on the 17th January 2012, and shall try to be brief.

Before illness struck I was a musician and have no scientific training, but sometimes I think I spot the odd misleading analogy or argument, although of course there are no guarantees, and I'm often more wrong than right, but I would like to respectfully beg your indulgence on this occasion.

There is much I find worrying in "Models of Sickness and Disability" ('MoSaD' hereafter) by Waddell G and Aylward M, referred to by Lord Freud as "a rather interesting piece of analysis", which will underpin the PIP assessment in the form of the so-called biopsychosocial assessment, behind which Lord Freud, mistakenly in my view, claimed "there is a coherent theory".

Among questionable claims and semantic acrobatics, especially in areas where the MoSaD authors appear to lack expertise, one finds examples of some rather disrespectful suggestion, seemingly being harnessed for effect, pointing away from scholarship and objectivity towards polemic, popular prejudice, and the troubling bias of the self-referential e.g. "These have been described as common health problems - Waddell & Burton 2004 .. similar in nature and sometimes even in degree to the bodily and mental symptoms experienced at times by most adults of working age". [6]

One example of the use of "suggestion" might be the following (I've removed the connecting camouflage with '...' ):

"Many incapacity benefit recipients are not completely incapacitated but still retain (some) capacity for (some) work, although this does not mean that they are all malingerers or scroungers ... malingering ... is extremely rare ... even if some degree of exaggeration may be much more common." [5]

Not a few of the MoSaD author claims appear to me to be closer to fiction than fact, for example, when they suggest that "schizophrenia and a subjective complaint of stress" are but "two ends" of a "spectrum". [8]

Although at root there are probably just clashing values, some claims appear to border on the nonsensical (perhaps with 'purpose'), for example: "The medical model is so implicit in modern medicine that it is often taken for granted". [8]

I am not sufficiently well to attempt a comprehensive overview and rebuttal, which would run to many pages, but I hope that someone may be able to deal with this thoroughly, before it is too late.

Instead, I will only focus on two details and their implications as I see them.

Interestingly, the article is peppered with the technical term 'model', at about 170 occurrences within the space of some 40 pages, excluding those at the top of each page (I am assuming I have the correct version of the article).

Some people may associate the term 'model' with science, or at least, some readers might tend to trust that a rigorous kind of approach has been taken, but I believe that would be mistaken in the main case being advanced by the authors of MoSaD, and Government.

There are two footnotes with (reluctant?) references to two articles (most people will not be able to access) which may help illuminate, and perhaps signal, the need for considerable caution.

I believe both of these articles are useful study before reading, or re-reading, and trying to decipher the "Models of Sickness and Disability" article, apparently so pertinent to PIP assessment.

The first can be found on page two of MoSaD:

"2. Scientific models are ‘simplified representations or descriptions of the structure of a complex system, which seek to explain phenomena based on theory and mechanisms, and are designed to facilitate testing and predictions’ (McLaren 1998, Llewellyn & Hogan 2000). Models provide a practical means of moving from theory to reality. The caveat is that models are not ‘real’ and should not be adopted uncritically: they are simply a tool that is useful only so long as it aids understanding, research and management".

One of the references concerns a paper: "McLaren N (1998) A critical review of the biopsychosocial model. Aust N Z J Psychiatry 32: 86–92" (I am unable to access the other).

It is interesting to note how the MoSaD authors shift the meaning intended by McLaren (when discussing Dennett) from: "A model is the practical means of matching a theory to reality" to: "a practical means of moving from theory to reality" (perhaps McLaren ought to know about this).

There is a considerable of difference between the two, the implications of which I hope will become apparent, but the paper would surely fail peer review at this early point.

The next sentence by McLaren (on Dennett) reads: "He emphasises that models must be distinguishable from the real things they model". Whereas the next sentence by the MoSaD authors reads: "The caveat is that models are not ‘real’.." (but aid in "understanding, research and management" - only when it suits one's own agenda, I presume) .

Meaning is again shifted, and likewise most readers would not be aware of the original context, McLarens intention, or the sleight of hand.

McLaren continues in his paper: "At this stage, the two meanings which attach to the noun 'model' are quite clear. A minority of authors use 'theory' and 'model' more or less interchangeably to represent an idea or notion. The majority, however, use the terms quite separately, reserving theory to nominate unembodied concepts or abstract notions, and model as the name for a class of real things, usually simplified diminutives of the unseen objects and processes outlined in the theories". [88]

Later on in this detailed analysis, McLaren states: "The common element in these accounts of models (physical, diagrammatic and mathematical), lies in their function: models model. What do they model? They model theories or theoretical constructs, meaning they embody, actualise or realise an idea, notion or concept". [88]

Before discussing the Biopsychosocial Model (BPS) in some detail, McLaren concludes: "Regardless of the validity of the theory, if the model is wrong, investigating it is non-science".

Following a lengthy dissection of the flawed thinking behind the BPS model and illegitimate attempts to borrow from systems theory, McLaren remarks: "[But] of the model itself, there is nothing to be seen. Engel simply demonstrated a need for a particular approach, talked about it for a while then announced that he had found it. He had not. All he offered was an emotive case for more humanity and less technology in medicine, little more than a heartfelt plea based in a particular ontological stance. It was hardly a theory, and it was certainly not a model". [89]

He elaborates how: "Engel did not define his biopsychosocial model; instead, he hoped its definition would emerge ostensively, through a description of how it might function, with the emphasis on 'might'. His model can therefore never reach scientific status: a description of what something does can never be an explanation of why or how it does it". [90]

After detailed and logical consideration, the situation becomes clear: "In practice, if we want to know whether Engel's biopsychosocial model is truly a model, or just a case of wishful thinking, then a simple test will decide the issue. Try making, say, a prediction about a man's psychological state from his biological data, or vice versa. Or perhaps try to predict wholly from sociological data which girls will develop post-partum mental disorders as young women or psychoses in old age. Since nothing like this can be done, Engel's 'model' is not a model in any interesting sense of the term". [91]

However, in spite of their knowledge of the paper by McLaren, it is not clear that the MoSaD authors have understood the serious issues facing them (although much of what they write appears to me to ignore the challenges of scientific responsibility coming from McLaren - who's published article the authors presumably could not easily avoid).

In MoSaD the authors write:

"The biopsychosocial model recognizes that biological, psychological and social factors, and the interactions between them, can influence the course and outcome of any illness. Human beings are biopsychosocial – an integrated whole of body and mind in a social being – so a comprehensive model of human illness must be biopsychosocial ... The term ‘biopsychosocial’ is a catchy shorthand that expresses the key features of the model. The disadvantage is that it is ‘professional’, technical and clumsy, but no one has yet produced a simple yet adequate alternative". [22]

Perhaps it should simply read: "We believe that we know what modulates the effects of an illness".

On this point it is rather remarkable that the MoSaD authors can only recommend developing "messages" to change outcomes. [28]

However when one is confronted with the novelty that : "human beings are biopsychosocial ... so a comprehensive model human illness must be biopsychosocial" (humans beings are bipedal ... so a comprehensive model of human illness must be bipedal), it would be wise to be on the alert for any non-scientific, as it were, agenda. [22]

There is of course an abundance of experimental research (some of it contradictory, some with uncertain practical application) showing both predictable and unpredictable effects on organisms from poverty, isolation, social hierarchies etc., which for their proper amelioration perhaps only the bravery of a radical overhaul of a currently unfair and hypocritical capitalist system would be required. However, that might be antithetical to the dogma of MoSaD, which I view more as part of the problem than part of any of realistic solution.

As the tortured arguments continue, one suspects that the authors are keenly trying to ensure something is kept out of public view, and I believe that it may simply be the term "psychosomatic" (linked to 'hysteria'), which is made very conspicuous by it's virtual absence (it reluctantly appears once, somewhat disingenuously in my estimation).

In the same way the authors invoke Hippocrates as some justification for allegedly treating 'the whole' person' without mentioning his dismal failure to spot the important difference between causes and mere associations, the authors unaccountably fail to mention why "Engel introduced the term biopsychosocial" (to replace psychosomatic), and perhaps the authors should be called on this. [23]

Had Lord Freud said: "We have not gone for the medical model; we have gone for the psychosomatic model", I do not think Members of the House would have been impressed for a moment, given its misogynist overtones and tragic history as a means to deny women medical treatment, among other things.

The second footnote and reference that I found of interest is on page 26 of MoSaD, and concerns a chapter-length article by George Davey-Smith, a Professor of Clinical Epidemiology, entitled "The biopsychosocial approach: a note of caution" (in White P (2005) Biopsychosocial Medicine: An Integrated Approach to Understanding Illness. Oxford: Oxford University Press). Very few people will have access to this article.

Interestingly, without mentioning Davey-Smith by name, the footnote reads: "26. White (2005) gives the classic examples of this debate: in previous times, cholera was attributed to ‘moral’ factors and more recently peptic ulcer was attributed to psychosocial stress (before the discovery of the bacterium Helicobacter pylori). Both examples are of specific diseases and of doubtful relevance to common health problems".

A previous footnote, to "Proponents of the medical model argue that its achievements justify expectations that all illness will eventually succumb to biomedical advances,9 ..", simply states: "9  Historical examples of cholera or peptic ulcer, originally attributed to various psychosocial ‘causes’ and subsequently shown to be physical pathologies, are not relevant to the present discussion. These were always objective diseases, even if the aetiology was unknown". [11]

And later, following the section on "The biopsychosocial model applied to common health problems", at footnote 39  "Thanks are due to Bob Grove and Peter White for suggestions on this section". [37]

The summary of the chapter by Davey-Smith begins:

"This chapter will provide a cautionary critique of whether the biopsychosocial (BPS) model is useful in understanding aetiological factors in chronic diseases. I will illustrate the arguments by referring to studies of peptic ulcer and ischaemic heart disease. I will show that bias and confounding can generate spurious findings and associations, especially in observational studies. When interventional studies have been used to examine the efficacy of a psychosocial approach the results have been disappointing".

Davey-Smith points to various historical precedents that eventually undermined popular assumptions underpinning the BPS model including:

"Over the past 50 years many psychosocial factors have been proposed and accepted as important aetiological agents for particular diseases and then they have quietly been dropped from consideration and discussion. If this meeting had been held 15 years ago we would have discussed type A behaviour at great length. Type A behaviour will hardly be mentioned at this meeting, because it no longer appears to be an important cause of coronary heart disease. People versed in the history of epidemiology will know that conditions such as cholera, pellagra, ben ben, asthma, Down’s syndrome, scurvy, yellow fever, typhoid, and peptic ulcer were all at one time seen as diseases that were importantly influenced by stress or (in earlier times) ‘moral’ factors. In 1832 William Beaumont, for example, considered that such factors underlaid ‘the greater proportional number of deaths in the cholera epidemics'. He would doubtless have considered the BPS model an ideal way of conceptualizing the causes of cholera, while pouring scorn over those studying the geographical distribution of cases and relating this to water supply." [3]

Before discussing the well known & misleading stress theories of peptic ulceration, where it was claimed in 1948 that a "better appreciation of the natural history of the disease has directed the treatment away from the ulcer towards the individual as a whole" [4], Davey-Smith introduces Sontag.

"An important critic of the BPS model—although she never explicitly talks about it— is Susan Sontag. She published a remarkable book, Illness as Metaphor, a year after Engel's 1977 article appeared.

Sontag wrote about how in plague-ridden England in the late sixteenth and seventeenth centuries, it was believed that a happy man would not get the plague. She stated that,

'The fantasy that a happy state of mind would fend off disease flourished for all infectious diseases before the nature of infection was understood. Theories that diseases are caused by mental state and can be cured by willpower are always an index of how much is not understood about the physical basis of the disease. The notion that a disease can be explained only by a variety of causes is precisely the characteristic of thinking about diseases where causation is not understood'

Diseases that are thought to be multi-determined have the widest scope for becoming metaphors for what is felt to be socially or morally wrong.

Sontag was writing at least partially in response to her own diagnosis with cancer. Her reason for being sceptical of the BPS model was that she saw it as a way of putting blame for disease on the people with disease. This metaphorical treatment of disease can lead to internalized blame and guilt. Sontag therefore wanted to strip these metaphors away and see disease principally as a biological, not psychological, phenomenon". [3]

I found his rich tour of confounding and bias incisive and disturbing, given the current uncritical climate. As with the McLaren paper, it seems odd that the MoSaD authors fail to acknowledge the meat of the argument, which concerns bias and confounding, while dismissing the paper on seemingly spurious grounds, without mentioning the authors name.

He concluded [GeorgeDaveySmith_White_BPS.doc]:

"In this presentation I have suggested that the epidemiological evidence supporting important contributions of psychosocial factors as direct causes of disease is limited. However, it might be suggested that despite this, a doctor who is influenced by the BPS is the sort of doctor one would like to consult when sick. I am not so certain about this. When writing about a myocardial infarction patient whom he had seen, Engel stated, `In the end, whether the patient lives or dies, the biopsychosocial model further provides the physician with the conceptual tools to clearly think and plan the implications of the cardiac arrest.' If I have a heart attack, I want to be treated by a doctor who cares about whether the patient lives or dies. I'm not really concerned about whether the doctor has the above-mentioned conceptual tools, I would rather have a doctor who keeps up to date with the best evidence on somatic treatments and gives me morphine, a thrombolytic, and aspirin, then puts me on appropriate long-term treatments". [12]

The MoSaD authors claim both, that the reasonable position of Davey-Smith is of "doubtful relevance to common health problems" (without credibly establishing how that might be possible), apparently dismissing inconvenient truths, and, that their BPS model "recognizes that biological, psychological and social factors, and the interactions between them, influence the course and outcome of any illness". [26 & 22]

However, as McLaren has pointed out: " ... it might be argued that an approach which considers biological, psychological and social factors necessarily amounts to a biopsychosocial model but, for several reasons, this is not the case. To begin with, we must clearly distinguish theories with real predictive value (i.e. they can predict something we didn't know or which was counter-intuitive) from those which can only 'explain' or rationalise what we already know. The former are science, but the latter are just self-reinforcing prejudice.

Only highly improbable predictions can test a theory's basic assumptions. Furthermore, researchers who gather data from a variety of theoretically unrelated fields will not be able to test the basic assumptions which led them to collect just those data and not others. They may be able to detect associations but, critically, not errors in their own basic assumptions. Only a model with true predictive value can do that, and then not always.

Unless there is an integrating theory already in place, gathering biological, psychological and sociological data about people will only yield scattered lumps of information which don’t relate to each other in any coherent sense. Without an over-arching theory to integrate the fields from which the data derive, associations between differing classes of information are meaningless". [90]

Some readers of "Models of Sickness and Disability" might wonder why something, that is "hardly a theory" and "certainly not a model" that produces "self-reinforcing prejudice", that "can lead to internalized blame and guilt" and can be used "as a way of putting blame for disease on the people with disease", according to McLaren, Davey-Smith and Sontag respectively, is being promoted by  a UK Government.

Providing some possible insight into this, one organisation had already reported as far back as 2005 that:

"Confirmation that Medical Services have adopted the Biopsychosocial Model for assessing not just claims based on incapacity for work but also DLA and AA came in the July edition of Decision Maker’s Exchange (DME), the monthly newsletter for DLA and AA decision makers ... An item in DME explained that:

“Medical services have recently introduced a change in the way that they assess a customer's disabilities and the effect it has on their lives. The Biopsychosocial Model aims to address how a persons disability has an effect on that individuals life”.

The newsletter features an article by Mansel Aylward, former Chief Scientist at the DWP, self-effacingly entitled “Professor Aylward endorses the Biopsychosocial Model of Disability”. In it, the Professor asks, but doesn’t actually answer in any tangible way, the questions:

"Why is it that in disability assessment medicine we see two individuals, of the same age and with the same illness or pathological condition, but with very different resulting levels of disability? How, as medical disability analysts, do we assess the level of disability in people with conditions whose effects are predominantly or wholly subjective? People with "medically unexplained symptoms" - conditions for which there is limited or no recognised pathological basis, such as chronic fatigue, fibromyalgia, chronic low back pain - feature regularly in disability assessments for state benefits. How do we evaluate and reasonably validate the functional limitations that affect people with such conditions?"

Whilst not giving any clear explanation of how it is to be applied, the Professor does explain that the Biopsychosocial Model is the answer to the disability analyst’s plight".

"Genuinely disabled

Whatever the philosophy behind the model, Medical Services doctors are now being taught that the most important test to be applied to DLA and AA claimants is whether they are “genuinely living the life of a disabled person”.

Doctors are being taught to look for evidence of:

“Consistency of disability within a typical day” – for example, someone with chronic fatigue might be expected to have a disturbed sleep pattern, often needing to sleep during the day.

“History involving chronic pain management” – this might be referral to a pain clinic, cognitive behavioural therapy, appropriate medication, physiotherapy or alternative therapies such as acupuncture.

“Home adaptations and adaptations to daily living” – this might include things such as the regular and consistent use of raised chairs, walking aids, a commode and a downstairs room for sleeping in.

“Appropriate intervention from a carer” – this might be assistance with things such washing and bathing, dressing, etc.

It’s nearly all in your mind

In theory, such an assessment which would require a more detailed and holistic assessment by doctors.

In practice, it seems likely to be used to dismiss a large part of a claimant’s needs as not physical but “psychosocial”.

"Benefits and Work has seen one recent medical report in which a DWP doctor explicitly stated that he had used the Biopsychosocial model. The claimant has Chronic Fatigue Syndrome and was seeking renewal of an award of the middle rate of the care component and the higher rate of the mobility component. His condition had deteriorated since his last award over two and a half years ago. The doctor who visited him recorded that:

“There are few significant findings other than subjective tenderness and stiffness. But the customer is clearly living the life of a disabled person and I have applied the Biopsychosocial model.”

The doctor then stated, without explaining how the conclusion had been reached, that the claimant’s condition was just 40% physical and “60% psychosocial: dependence on family members, depression and pain”. This allowed the decision maker to conclude that the claimant’s award of higher rate mobility was no longer appropriate as the primary reason for his virtual inability to walk was psychosocial rather than physical". [New genuinely disabled test to cut DLA & AA awards.pdf - ]

In a 2005 Newsletter (containing the same material as the Decision Maker’s Exchange above) from UnumProvident Centre for Psychosocial and Disability Research, where Professor Aylward was "Sponsored by UnumProvident", Dr Peter Dewis of UnumProvident stated: "I think it is true to say that without the academic debate stimulated by the Unit, we would not have developed our thinking on the bio-psychosocial model of illness in the way we have.

Without this developing understanding, we would not have been in a position to make the changes we did to our claims team structure in November". [Issue 1.pdf]

And at an Atos Origin Medical Services meeting in 2004, the manner in which BPS dogma were being authoritatively promulgated, the convenient fictions and lack of logic those responsible would no doubt refuse to tolerate if applied to their own family and friends, was reported thus:

“Psychosocial factors – such as personality, life events and psychiatric disorders – are at least as important as physical factors in the onset and maintenance of these conditions. Patients can make a number of ‘secondary gains’ with these unexplained illnesses, such as: work absence as a reward for years of struggle; turning a socially unacceptable disability in to a more acceptable ‘organic’ disability caused by injury or disease beyond their control. They can blame their failures on the illness; elicit care, sympathy and concern from family and friends; avoid work or even sex; and there are financial rewards associated with disability.”

" ... if a patient believes their illness was caused by a virus and there’s nothing they can do about it, their prognosis is not likely to be positive. But if the patient believes stress may have contributed towards their symptoms, that the symptoms won’t last long and they have control over them, then the prognosis will be better.”

“What people believe influences how they react and what they do about it. The mind and the body interact and we need to understand how this works. We need patients to understand their situation, so they are more likely to go back to work.” [AtosConference2004.pdf]

The MoSaD authors express their questionable beliefs about all of their fellow humans, apparently without exception, and their own values: "Human beings are driven by both self-interest and altruism, but self-interest is generally dominant. There is nothing morally wrong with self-interest, and it should not be misinterpreted as selfishness or greed". [21]

Being a foreign company, Atos, like UnumProvident, would probably then (and perhaps conveniently for those promoting Government short-term-ism) have no natural interest or concern in the well-being of British citizens, and probably even less for the real long term economy of this country.

Given the combined forces of what appears as an unseen mainly corporate-generated self-serving attitude (tacitly approved by MoSaD authors as perfectly moral) in the guise of the BPS psychosomatic model, possibly applied to the disadvantage of others, its systematic corporate inculcation promoting the prejudice of a weak pop-psychology directed at vulnerable and relatively powerless others, masquerading as benign science while probably routinely overriding serious factual matters of other individuals health, and a profit-driven foreign company (who may not hesitate to sack their British employees first, should their profits fall), it is unsurprising that so many of the bad decisions they help facilitate are overturned on closer examination at costly appeals.

It would be of course be much cheaper in the long run to adopt some of the higher standards of appeal tribunals in the first place.

On the BBCs "This Week" programme of the 19th of January, after raising awareness of the steep rise in UK disability hate crime, the comedienne and writer Francesca Martinez summed up the situation succinctly: "...this financial crisis we're in was caused by a very elite few at the top and once again the vulnerable in society are being made to pay for the greed of those at the top so really I think the government is morally disabled".

However, apart from wider such implications, I am hoping that someone, or some individuals have identified just how disingenuous and misleading the alleged biopsychosocial model could be in all its slippery expediency, and the serious threat to the health of others it may well represent, possibly now with a vengeance.

Although it is probably not the case, if anything in my email (and files) may be of interest or of use to anyone, please feel free to forward it.

I shall place relevant documents on-line via 'mediafire' for download, with a text-file index.

Thank you for taking the time and trouble to read this.

Yours sincerely,
Douglas T Fraser


Kate Rigby said...

Excellent article, Douglas. I also wrote to Tani Grey Thompson, Baroness Mar and Baroness Thomas of Winchester regarding this pseudoscientific model.

Anonymous said...

Thank you for posting this, Dr Speedy, and thank you Douglas Fraser for your splendid letter. I have very severe ME and your efforts help me to continue living in what is most likely a hopeless position. A disease which is denied and distorted by the government and the medical establishment is so much harder to live with, and harder for researchers and doctors to understand and treat.At some point it just comes down to refusing to be anihilated because we caught the wrong disease.


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