Psychology as elective support: Toward ME-affirmative practice

This extended blogpost draws from some of my published academic work exploring how psychotherapy (as an elective support) could be re-imagined in a more empowering, epistemically and socially just way for people with ME/CFS, long Covid, and other energy limiting conditions. Owing to feedback, I have chosen to highlight the relevance of my arguments to ME/CFS.

As a person with ME, all of my research is informed by lived experience of this diagnosis, alongside being harmed by psy, and having worked in mental health services.

Very little psychological literature recognises how ME/CFS is shaped by political landscapes, or how disability tied to ME/CFS extends beyond the individual to comprise an interaction between ‘self’ and an ableist society. (Plenty of wider disability-related literature exists on these subjects). Additionally, there has existed a notable lack of research on ME/CFS, psychotherapy, power and politics. For these reasons, and owing to my experience of the harms wrought by oppressive power relations and politics, my research foregrounds precisely these issues. In particular, I have explored the possibility of structurally competent, disability-affirmative (ME-affirmative) practice in psychological settings, with particular interest in counselling psychology, clinical psychology, counselling and psychotherapy.

Definition of terms

‘Structural competency’, a concept developed by Drs Metzl and Hansen, recognises that clinical interactions (relating to both patient and practitioner) are shaped by cultural and socio-political influences. In psychotherapy, this would include conceptualising psycho-emotional distress as mediated (at least in part) by oppressive power relations and politics, rather than ascribing it to ‘faulty’ brain chemistry or ‘maladaptive’ cognitions or behaviours. Structurally competent psychological practice might thus be otherwise expressed as culturally and socio-politically sensitive practice.

The term ‘disability-affirmative’ – to my knowledge – was coined by psychologist Dr Rhoda Olkin. Broadly understood, disability-affirmative refers to a non-pathologising approach that is familiar with disability culture(s) and disability rights, whilst authentically valuing the knowledges of disabled people. The ethos underpinning this term thus overlaps to some degree with the affirmation model of disability, although the two concepts are not synonymous. ‘Disability-positive’ or ‘disability-affirming’ are sometimes used with similar connotations, as is the intersectionally inclusive concept of 'anti-oppressive practice'. Inspired by work at the intersection of disability studies and (critical) psychology - and following important work on disability-affirmative practice by Mel Halacre and colleagues in the counselling professions - I would describe my approach to re-imagining psychological practice in the ME/CFS arena in the same vein – e.g. as ME- or ME/CFS-affirmative.

Additionally, and importantly, power relations and socio-political context extend beyond ableism, disability and diagnosis. For this reason, I have emphasised the importance of engaging with intersectionality (intersecting axes of oppression and domination) in psychological practice with people with ME/CFS. (Again, this is something that has attracted plenty of attention outside of the ME/CFS arena, but very little attention in ME/CFS literature). Relatedly, and owing to how power hierarchies entwine with knowledge hierarchies, I have emphasised the need for practitioners to cultivate greater reflexivity: recognising that our way of understanding the world may be limited, and being open to other ways of knowing. Finally, and since the practitioner-patient relationship is an important site of power relations, I have been interested to explore how this relationship can be cultivated in a maximally egalitarian way, with a view to re-empowering rather than further oppressing people with ME/CFS.

Underpinning my work is recognition of the foundation of professional ethics: see here for a preprint by Associate Professor Charlotte Blease and I reflecting on how the ethical principles enshrined within the code of the British Psychological Society compare with ME/CFS patient report of practice in psychotherapy settings.

In the remainder of this blogpost, I foreground some of the aspects of psychological practice that feature among my research interests: (i) the therapeutic relationship and personal-relational qualities of practitioners, (ii) power relations within and outside of therapy encounters, (iii) the need to develop culturally and socio-politically sensitive, disability-affirmative frameworks for practice. These aspects constitute a small component of what makes for safe and empowering practice – albeit I believe an important and heavily overlooked component in the ME/CFS arena. These ideas are discussed in more detail in some of my papers: here, here, here, here, here, here, and here.

Patient-practitioner relationship and practitioner’s ‘self’: authenticity, humility and reflexivity

Different types of psychological practice place differing emphasis upon the patient-practitioner relationship, sometimes called the therapeutic relationship. This relationship is typically considered one of the strongest predictors of ‘therapeutic outcome’, yet very little research in the field of ME/CFS explores the personal and relational qualities of practitioners, or intersubjectivity within therapy encounters (the interplay of practitioner and patient psychological processes). This lack of research is even more striking when we consider that people with ME/CFS often cite personal and relational qualities of practitioners (such as empathy, compassion, rapport, feeling connected etc) as a valuable component of the therapy process – and that many people with ME/CFS have lost trust in psychological practitioners owing to lack of demonstrated empathy, compassion and other such qualities.

In my experience, it would not seem excessive to suggest that a practitioner's personal and relational qualities can make or break therapy. I am often struck by the social-relational nature of much suffering – how suffering is often tied to oppressive relationships and socio-political inequalities. The therapeutic relationship clearly has a role to play in either lightening the load, or furthering oppression.

Relatedly, some research exploring practitioners attitudes (‘use of self’) toward patients with so-called ‘medically unexplained symptoms’ demonstrates a notable inconsistency between practitioners’ beliefs about their practice style (perceived to be empathic and collaborative), and actual practice (see here and here). Moreover, my experience working in psychological settings is that psy practitioners often act out unresolved conflicts around disability and suffering for which they do not have the solution. This may point to a need to engage in greater critical self-reflection – heavily entangled with structural-organisational constraints such as an increase in time-limited, target driven and manualised interventions, audit culture, work intensification and overarching neoliberalisation of care settings.

Given the apparent disjunction between practitioners’ perceptions of practice and reality, I have repeatedly recommended greater emphasis upon humility and (critical) reflexivity, within training, supervision and continued professional development. Although many psy professionals will claim that reflexivity forms a key part of their training, the above points suggest that current training provisions are not always adequate.

In terms of patient-practitioner power dynamics, I favour a model of allyship, with practitioners seeking to cultivate a maximally egalitarian and empowering relationship, whilst recognising that practitioners will always have a power advantage. Whilst numerous means of equalising this power differential exist – including flexible therapeutic boundaries, consideration of open case notes or co-writing of notes, and therapeutic transparency – I believe that most roads lead back to the practitioner’s personal and relational qualities. Carl Rogers’ notion of authenticity, empathy and openness in relationships of as a ‘way of being’ (as opposed to acting the part) is pertinent here.

Power dynamics within the therapeutic relationship also point toward a wider phenomenon: the health and social impact of power differentials within and outside of therapy.

Attending to power relations within and outside of therapy

Whilst practitioner reflexivity and humility may facilitate the management power differentials in practice, understanding the wider impact of power and politics requires more than practitioners honing their personal and relational qualities. In this respect, I have repeatedly recommended integrating teaching of disability politics into practitioner training programmes. Such training – which I believe could significantly reduce victim-blaming, disbelief and other documented forms of disability denial in clinical encounters - should include but extend beyond the histories of oppression that plague ME/CFS.

For example, whilst I believe that familiarity with the social model of disability is crucial for psychological practitioners, I have also suggested that practitioners should seek to become familiar with other models of disability. Additionally, practitioners should be aware of how disability intersects with (and is co-constituted by) other forms of oppression (pertaining to race, ethnicity, sexuality, non-binarised gender, socio-economic class and so on) and the overarching influence of austerity politics.

Whilst practitioner education in disability matters is crucial - not least to mitigate the risk of the service-user having to educate the practitioner - such knowledge should not be prioritised over the patient’s knowledge and meaning-making. Rather, disability-competent training (promoting familiarity with at least some of the wealth of knowledges produced by disabled communities) should encourage practitioners to recognise and respect the expertise of patients. In turn, practitioners may be better equipped to support people with ME/CFS in a way that conforms to each service-user’s meaning-making frameworks and expertise-by-experience, as opposed to historically dominant (psychosocial) meaning-making or the practitioner’s own bias.

Socio-politically sensitive practice does not mean ignoring suffering that arises from within the person – it means looking at the bigger picture. In fact, in the case of ME/CFS, affirming biological realities (and thus helping people to manage physical, cognitive and sensory impairment) is also consistent with structural competency, since political agendas have served to downplay the biomedical dimensions of ME/CFS.

However, a socio-politically sensitive approach points toward other therapeutic activities, which may include: supporting people with ME/CFS to assert their rights as disabled people (requesting disability-related accommodations in work, education and healthcare, applying for financial support etc.); navigating structural, interpersonal and internalised ableism and other intersecting forms of oppression; dealing with disability denial; seeking solidarity and support from social movements.

Very few psychological frameworks or theories explicitly recognise disability as something that extends beyond individual impairment or ‘deficiency’; in the case of ME/CFS, this individual-level focus has been dominated by pathologising narratives of fear avoidant behaviours and catastrophizing cognitions. This leads onto the final consideration for the purposes of this blogpost.

Developing and applying culturally and socio-politically competent frameworks

As I state here, the British Psychological Society encourages all psychological practitioners to ‘move beyond the level of the individual’ and ‘address wider structural issues in society which maintain excluding processes and power differentials’. This (apparently, structurally competent) position is reflected in the ethical codes and guidelines of other psy professional bodies within and beyond the UK. Yet, practitioners cannot really be expected to do this, if they don’t have the tools.

In this regard, I have repeatedly noted that the biopsychosocial model as applied to ME/CFS overlooks important ‘social’ factors in health, illness and disability, including neoliberal-capitalist austerity politics, psy-corporate-state alliances, intersecting power systems (ableism, racism etc) and ensuing intersectional inequalities.

Whatever frameworks or models are applied (and I don’t think that one size will ever fit all), psychological practice in the ME/CFS field should demonstrate psychopolitical validity – recognition that psychological and political processes inter-relates, and the ability to attend to both. As I argue here, such an approach is crucial, not least in formulating and working with what has historically been framed as maladaptive psychology:

“Presenting issues such as guilt, shame, anxiety, depression, grief, trauma, identity disruption and suicidal ideation may stem from structural and internalised ableism, social stigma, iatrogenesis, financial precarity and what has been termed the “psychic life of austerity” (Mills, 2018, p.30), whilst anger may represent an appropriate response to the recognition of injustice.”  (Hunt, 2023)

All such presenting issues entwine with, and may be amplified by, clinical and societal disbelief and disability denial. For example, whilst multiple losses implicated in ME/CFS often engender grief, this is compounded by collective disavowal of the suffering associated with ME/CFS, often leading to disenfranchised grief. (I have written about loss and disenfranchised grief as a person with ME here). Similarly, trauma sustained by people with ME/CFS is frequently - at least in part - iatrogenic trauma, which is then medically dismissed. My personal experience of medically-induced trauma is that some of it overlaps with and constitutes betrayal trauma.

In the field of psycho-emotional distress and madness (sometimes termed mental illness), various approaches have been developed to more fully address social-relational influences and de-pathologise disability and body/mind difference. Arguably the most well-known approach is the Power Threat Meaning Framework, developed by clinical psychologist Dr Lucy Johnstone and colleagues. Having engaged with this work, I have suggested that psychotherapy and wider psychological practice for ME/CFS might draw inspiration from this approach. Additionally, I have applied other socio-politically cognisant concepts and frameworks in exploring how ME/CFS healthcare might be re-imagined, including: Metzl and Hansen’s structural competency framework, Olkin’s Disability-Affirmative Therapy, Thomas’ social-relational model of disability, Thomas’ and Reeve’s concept of psycho-emotional disablism, Foucauldian biopolitics, and Meyer’s minority stress model.

In exploring how the biopsychosocial framework as applied to ME/CFS has been moulded to serve psy-corporate-state interests, I have also considered how this framework might be radically re-imagined in a socio-politically sensitive and relational manner. To pre-empt, I’m aware that anything that includes the term ‘biopsychosocial’ will not be accepted by some people with ME/CFS, and understandably so. Nevertheless, other structurally competent frameworks (including the Power Threat Meaning Framework) can be loosely mapped onto non-pathologising, non-reductionist, emancipatory frameworks that account for biological, psycho-emotional, and social (socio-political) aspects of suffering. The main point I want to make here is that structurally competent healthcare for ME/CFS is possible.

Wrapping up

This blogpost has foregrounded the importance of (i) the therapeutic relationship and personal-relational qualities of practitioners, (ii) attending to power relations within and outside of therapy encounters, (iii) the need to develop culturally and socio-politically sensitive, disability-affirmative frameworks for practice. Points raised here represent a portion of what makes for safe and empowering ME-affirmative practice; however, they also represent historically under-represented areas of research. From a disability-affirmative perspective, mainstream psychology has failed to recognise that disabled people represent an oppressed group in society, that (bio)politics shape every aspect of encounters with disabled service-users, and that disabled knowledges are crucial for safe and empowering practice and policy. I believe that the time is ripe for a paradigm shift within psy, toward an inherently socio-politically cognisant discipline that recognises disability as extending far beyond the person. As I have discussed here, US ‘new paradigm’ thinking (which could be described as both structurally competent and disability-affirmative) could set a precedent for similar initiatives within the UK.