“To provide a basis for understanding the determinants of disease and arriving at rational treatments and patterns of health care, a medical model must also take into account the patient, the social context in which he [sic] lives, and the complementary system devised by society to deal with the disruptive effects of illness, that is, the physician role and the health care system. This requires a biopsychosocial model.” [My emboldening of text]
George Engel (1977). The need for a new medical model: a challenge for biomedicine
I have recently written about the structural dimensions of the biopsychosocial (BPS) model of chronic illness and disability, with a particular focus on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) - a condition which appears to have been a prime target of the academic-state-corporate nexus. As pointed out in the final blogpost of that series, macro socio-economic policies (notably welfare reform), corporate interests (notably, disability insurance profiteering) and associated stigmatisation impact on micro levels, in many cases doing real harm to patients. The BPS model has arisen from and is reinforced by these macro level phenomena. Yet, acknowledgement of such phenomena is largely lacking from peer-reviewed literature and from mainstream discourse. Further, given that the BPS model ostensibly recognises social factors in contributing to health and illness, it should recognise the role played by the model itself – and its architects – in contributing to chronic illness and disability.
Edit: a more recent summary blogpost of the political underpinnings of the BPS model can be found here, whilst a full-length referenced version of the whole series can be accessed here.
In this blogpost I will consider the BPS model as a social-structural phenomenon, the impact of which should be acknowledged in any BPS conceptualisation of chronic illness and disability. That is to say, it’s time for the BPS model and its proponents to take a critically reflexive stance on chronic illness and disability. This should particularly be the case for ‘contested’ (politicised, psychologised, medically neglected) illnesses such as ME/CFS – and, increasingly it would seem, Long Covid.
For clarity, I subscribe to a view of chronic illness and disability that potentially encompasses both the social and medical models of disability (to varying degrees depending on the person, their circumstances and social context). I also tend towards a perspective that emphasises the relationship between power and knowledge and promotes a transdisciplinary approach, as per critical disability studies.
Critical reflexivity
Taking a reflexive stance involves turning the lens of scrutiny back onto oneself. In social sciences it usually refers to recognising how personal biases, values and past experiences impact on the entire research process. A reflexive approach to BPS ideology would involve proponents of the BPS model considering their own psychology and the psychology of the model, reflecting upon how and why they are harming patients with BPS theorising. Whilst the need for reflexivity is well-documented in published literature and in patient narrative, the added ingredient I propose here - largely absent from literature in the field - is the need for critical reflexivity. The qualifier ‘critical’ emphasises an approach which challenges dominant assumptions, norms and discourse, alongside social structures that construct and reinforce power and oppression, privilege and disadvantage. This of course requires that structural and critical social factors in health and illness are taken into account. (I have written in more depth on critical reflexivity here).
Lack of critical reflexivity in the BPS model
As argued in the afore-mentioned blogpost series, whilst the BPS model ostensibly draws on social factors in the development and maintenance of chronic illness and disability, it largely only draws on individualist narratives that are designed to stigmatise patients and justify the cutting of welfare expenditure and medical care. Examples of such ‘social’ factors are the purported social reinforcement of over-solicitous significant others or colluding clinicians, alongside unsubstantiated theories of social contagion through patient support groups. Critically-informed social and structural factors - for example, stigma and discrimination bound up within neoliberal narratives around disability, the role of institutions and socio-economic polices – are ignored in the BPS model.
This is very convenient given that the BPS model is a significant driver of stigma and discrimination and has emerged from the political, financial and professional interests of the academic-state-corporate nexus. From this perspective, it is ironic that some of the architects of the BPS model as it applies to chronic illness and disability (Waddell & Aylward) appeared to want to associate their model with the World Health Organisation (WHO) model of disability (the International Classification of Functioning, Disability and Health), which is also described as biopsychosocial. This is very misleading. The WHO model of disability is far more contextualist, taking into account not only social factors, but also structural factors such as institutions and macro level policies - the very factors that gave rise to the BPS model, and the very factors that the BPS model ignores. It is not clear why Waddell & Aylward would misrepresent the relationship between the two models: disability scholars have suggested it might have been a ploy to raise the credibility of the BPS model through association with the WHO, and I am inclined to agree.
Lack of reflexivity in the BPS model
In a similar vein of selective attention, psychosocial phenomena that represent abuses of power committed by certain BPS proponents – for example, gaslighting and victim blaming – are ignored in the BPS model. Yet, patient narrative, for example in the field of ME/CFS, highlights how the perception of being disbelieved, uninvolved in one's care and having one's moral character questioned causes distress and may lead to loss of trust in the healthcare and broader social system. This can lead to withdrawal from health services, engendering further marginalisation and further biopsychosocial harms. (See here for a paper on the harms of the BPS model and here for patient survey data). Reflexivity demands that the related psychology of psychologists, psychiatrists and other clinicians – which might include dislike of medical and scientific uncertainty, just world fallacies, ableist notions about illness and recovery, hubris and need to play the archetypal hero – should be subject to scrutiny within BPS theorising. (Given the recent BMJ article painting yet another picture of heroic eminent academics being persecuted by extremist disabled people, we perhaps need to add virtuous victim signalling amongst BPS proponents to that list).
Concepts such as ‘aberrant illness beliefs’ become perversely ironic when we consider how BPS proponents continue to believe that conditions such as ME/CFS are primarily psychosocial, despite no evidence of this and burgeoning biomedical research suggesting the contrary. A similar irony exists for the concept of secondary gains which has no empirical basis and which, I have previously suggested, is a myth constructed and perpetuated by those whose chief (political, financial, professional) gains derive from stigmatising patients. Equally, the BPS suggestion that patients who are resistant to psychosocial explanations might harbour mental stigma appears to arise from little more than BPS proponents harbouring stigma towards patients whose lived experiences does not match up with their pet theories. (There is a big difference between patients resisting misdiagnosis and harbouring mental health stigma). Finally, whilst BPS proponents have toyed with the idea of childhood trauma as a predisposing factor in illnesses such as ME/CFS, they don’t appear to recognise the role that trauma from institutionalised healthcare abuse (medical PTSD) might play.
Need for critical reflexivity in scientific and healthcare training
Given that there is very little reflexive (as opposed to reflective) emphasis in medical and scientific training, and generally no inclusion of critical reflexivity, lack of insight into personal and institutional psychology – in this case, as it applies to the emergence of the BPS model - is perhaps unsurprising. This selective focus serves to shift the spotlight of scrutiny from the BPS model itself, and motivations of its creators (the academic-state-corporate nexus), onto patients in a thoroughly un-reflexive and victim-blaming way. An unfortunate example of lack of critical reflexivity is that of Prof Paul Garner’s volte-face on the conceptualisation and management of Long Covid earlier this year. Garner presented readers with a thoroughly individualist, and profoundly ableist narrative of illness and recovery, suggesting that he had recovered from Long Covid (and also apparently from ME/CFS) through power of belief, motivation and personal effort. Structural barriers to healthcare, social determinants of health and anything of a critical social flavour were conveniently ignored. Given that Garner is a multiply-privileged (white, male, economically advantaged, abled) doctor, such a position is arguably permeated with forms of stigma and discriminatory attitudes beyond ableism.
In apparent contrast to Garner’s perspective, the extract from Engel cited at the top of this blogpost suggests that the BPS model was originally amenable to a degree of reflexivity - acknowledging the role of the physician and broader healthcare system- and perhaps also to taking a more critically informed approach, acknowledging the social context and broader power systems within which patients and healthcare professionals are positioned. Any such ethos has now completely disappeared due to the theoretical and empirical cherry picking (or just plain inventions) of the politically motivated BPS cabal. However, I believe that the BPS model should either seek to represent a truly holistic conceptualisation of health and illness (including structural and critical social factors, notably the role of the model itself and those who promote it), or it should be permanently medically retired.
Other approaches to healthcare practice, such as William Osler’s medical humanism or Karl Jaspers’ method-based psychiatry (see here) have been proffered, whilst Prof Havi Carel’s phenomenological toolkit has been suggested as a resource for both patients and healthcare professionals, notably in the field of ME/CFS. I am certainly not advocating any form of the BPS model; rather I am arguing that if it continues to be used, it needs to recognise critically informed social and structural influences in health, illness and disability. That is, it needs to be a structurally competent BPS model.
Social and structural influences in chronic illness and disability
Structural and social influences in (influencers of) chronic illness and disability appear in many guises. The most obvious social factor (recognised as a social determinant of health) is perhaps access to healthcare; however, access to education, housing, neighbourhood and community conditions, employment conditions, food security and economic security also impact, in many cases more than healthcare. Such social conditions are frequently mutually reinforcing and are shaped by unequal and inequitable distribution of money, resources and power. Distributive injustice is driven largely by structural factors such as socio-economic policies, corporate interests, legislation and market forces within societies, alongside broader global agendas, all impacting on health, illness and disability.
Such structural factors have also given rise to and reinforced the BPS model of chronic illness and disability. That is to say, the BPS model plays an important role in furthering academic-state-corporate interests and ableist socio-economic policies in the UK, within a broader context of fiscal management in OECD countries. These interests and agendas have impacted negatively on chronically ill and disabled people’s healthcare and social protections, with a ripple effect on areas recognised as social determinants of health (economic security, work, housing, education etc). This may create a vicious cycle of marginalisation, furthering disability and adding to burden of illness.
Stigma and associated phenomena such as discrimination in numerous forms represent significant structural and social influencers of health and illness, potentially permeating all life domains and reducing life chances. I suspect that this is particularly the case when stigma is intersectional – arising from multiple marginalised identities or social categories that converge within one group or individual – although intersectional stigma research is limited. Stigma can serve as a political strategy, being weaponised to discriminate against certain groups, to justify their oppression whilst furthering the agendas of those who stigmatise. This strategy can be observed clearly in the context of UK welfare reform (and, more broadly, neoliberal policies and austerity management approaches of OECD countries) where the BPS model has been employed politically as a means of othering certain chronically ill and disabled patient groups.
The impact of living with a stigmatised diagnosis reverberates far beyond healthcare, social care and welfare provision. Social, occupational and psychological harms are accrued as chronically ill and disabled people are denied access to legitimate illness and disability status and identity, leading to lack of validation and accommodation by others (employers, educators, family and friends), internalisation of ableism and identity related stress. Such chronic and largely uncontrollable stressors can have a significant biological impact on the body over the life course, understood for example through concepts such as biological embedding and allostatic (over)load, increasing susceptibility to further ill-health. Many of these harms can, I believe, be traced back to the BPS model as it is currently applied, to abuse of power and to the nexus of interests promoting the model. More obviously, BPS inspired interventions such as graded exercise therapy (GET) and cognitive behavioural therapy (CBT), arising out of a stigmatised and inaccurate view of certain illnesses (notably ME/CFS), may lead to physical, psychological, social, occupational and financial harms.
Biopsychosocial counter-narrative
Below I have drawn up a rough representation of what a critically reflexive BPS model of chronic illness and disability might look like. This might more comprehensively be termed a bio-psycho-social-structural model (one might say a bio-psycho-social-political model, though I think the term structural is more capacious). It is particularly applicable to ‘contested’ chronic illness, the kind that health services attempt to frame as ‘medically unexplained symptoms’. Proposed factors are not further specified as predisposing, precipitating and perpetuating; rather, it is suggested that the factors may contribute in some way to burden of illness and disability.
Much of this draws on my reading of critical social sciences literature (often outside of the realm of chronic illness and disability as we appear to be an under-represented minority group in this respect), my personal experience as a marginalised patient, and learning from other people with chronic illness through support groups and therapy practice. Much of what is offered is tentative, since there is a dearth of critically informed research on chronic illness and disability, with notable exceptions. I more recently discovered the incredible work of Chronic Illness Inclusion, a Disabled Person’s Organisation that approaches chronic illness from a social justice perspective. Findings from Chronic Illness Inclusion research, exploring lived experiences of people with chronic illness (see here and here for examples) appear broadly consistent with the need to recognise the potential harm done by attitudes, practices and discourse within healthcare (a reflexive approach) and the need to include structural factors in any understanding of chronic illness and disability (critically informed approach).
The examples offered under each pillar are neither exhaustive nor definitive and do not seek to replace existing models based on empirical findings or well-supported hypotheses. Rather, my aim is to complement what exists and work towards a more holistic understanding of what might contribute to chronic illness and disability from a range of perspectives. In the field of ME/CFS, for example, Maes & Twisk (2010) proposed a bio(psychosocial) model drawing on inflammatory, immune, oxidative and nitrosative pathways that can be triggered or maintained by various stressors, including viral and bacterial infections and psychosocial stressors. I would argue that structural and interpersonal stigma and discrimination, alongside internalised stigma, can be understood as psychosocial stressors. From this perspective, I find it interesting that ME/CFS is more prevalent in women, and that race, ethnicity and socio-economic status may be risk factors for developing ME/CFS and/or for illness severity. It is also noteworthy that such a marginalised patient group (subject to considerable stigma and discrimination) has been associated in some research with earlier cardiovascular related mortality relative to the general population. (The same research also concerningly suggested an increased risk of suicide). I am not suggesting that stigma and discrimination cause such illnesses, but they likely contribute in a number of ways to the overall burden of illness and degree of disability and marginalisation.
In summary, a model of health and illness that was originally envisaged to consider the social context within which the patient resides, including role of the physician and broader healthcare system, should do just that. The current cherry-picking approach by BPS proponents serves the interests of the academic-state-corporate nexus, yet has little to no grounding in patient narrative, and is harmful to many patients. An approach to chronic illness and disability that integrates critical social and structural factors, including turning the lens of scrutiny on the healthcare and social system itself, may facilitate a more holistic understanding, reduce patient harms and lead to a more productive and equitable patient-clinician relationship. More research is needed on the precise role of structural and interpersonal stigma and discrimination in contributing to burden of illness and degree of disability and marginalisation.