Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome

Blease, Charlotte; Carel, Havi; Geraghty, Keith

doi:10.1136/medethics-2016-103691

Cited by 141 publications

(155 citation statements)

References 40 publications

(65 reference statements)

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“…It is exacerbated by the framing of ME/CFS as a psychiatric problem. This is more than just an 'additive' process where people with ME/CFS face multiple forms of epistemic disadvantage -illness (Carel and Kidd 2014); medically unexplained symptoms (Blease et al (2016a); and 'mental illness' (Crichton et al 2017). It may be that psychiatric-specific injustice operates as the 'trump card' in the pack.…”

Section: Me/cfs and Epistemic Injusticementioning

confidence: 99%

Contesting the psychiatric framing of ME/CFS

Spandler

Allen²

2017

Soc Theory Health

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ME/CFS is a medically contested illness and its understanding, framing and treatment has been the subject of heated debate. This paper specifically examines why framing the condition as a psychiatric issue-what we refer to as 'psychiatrisation'-has been so heavily contested by patients and activists. We argue that this contestation isn't simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law. We highlight the potentially harmful consequences of psychiatrisation which can lead to people's experiential knowledge being discredited. This stems, in part, from a psychiatric-specific form of epistemic injustice which can result in unhelpful, unwanted and forced treatments. This understanding helps explain why the psychiatrisation of ME/CFS has become the focus of such bitter debate and why psychiatry itself has become such a significant 'field of contention', for both ME/CFS patients and mental health service users/survivors. Notwithstanding important differences, both reject the way psychiatry denies patient explanations and understandings, and therefore share a collective struggle for justice and legitimation. Reasons why this shared struggle has not resulted in alliances between ME and mental health activists are noted.

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Section: Me/cfs and Epistemic Injusticementioning

confidence: 99%

Contesting the psychiatric framing of ME/CFS

Spandler

Allen²

2017

Soc Theory Health

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“…6 However, often, the experienced symptoms are attributed to psychological factors leaving these individuals to cope with their situation on their own. 4,5,7 Although some authors have focused on problematic issues related to health care services and complaints made by patients 8,9 and others have drawn attention to the epistemic aspects of these complaints, 10,11 patients continue to report being "epistemically marginalized" or excluded by health professionals. 12,13 Epistemic marginalization may be understood as under-inclusion of the firsthand experiences and perspectives of those who suffer from medically unexplained syndromes because of the ontological stance taken by health care providers.…”

mentioning

confidence: 99%

Naked in the eyes of the public: A phenomenological study of the lived experience of suffering from burnout while waiting for recognition to be ill

Engebretsen

Bjorbækmo

2019

Evaluation Clinical Practice

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Although there has been a focus on problematic issues related to health care services and complaints made by patients, individuals who suffer from medically unexplained syndromes continue to report being epistemically marginalized or excluded by health professionals. The aim of this article is to uncover a deeper understanding of the what‐ness of experiencing being naked in the eyes of the public while waiting to be recognized as ill. Therefore, a phenomenological approach was chosen to inductively and holistically understand the human experience in this context‐specific setting. Semi‐structured interviews were conducted with two men and six women between 25 and 65 years of age, who had been on sick leave for more than 52 weeks. Their symptoms were consistent with Exhaustion Disorder (ICD‐10, F43.8A). The meaning of the interviewees' lived experience was explored using a life‐world approach to phenomenological reflection and writing. The participants described their experience of encountering the general practitioner as taking part in a battle. Feeling distrusted by others seemed to result in disconnection from their habitual lifeworld, which in turn triggered a shame reaction. Additionally, the study showed a possible distrust related to several communication levels within the health care system, which influenced the recovery process negatively. Lack of experienced support can lead to exacerbated feelings of distress. Accordingly, the psychosocial experience of being ill might be as important as its unknown aetiology. Therefore, in the context of these interpersonal relations, both norms, values, and attitudes, and issues of power need to be considered and addressed properly.

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“…Patients may present similarly to patients with depression, for example, and a lack of conceptual resources for distinguishing CFS/ME from depression might shift doctors towards interpreting the patient's experience in a particular way which may be at odds with the preferred interpretation of the patient. Blease et al (2016) write that testimonial injustice is sustained and also accompanied by hermeneutic injustice, since healthcare professionals (the epistemically and practically authoritative group) fail to provide the appropriate training about CFS/ME to trainee physicians. This, they argue, facilitates prejudiced deflations of patient credibility, and/or 'an unfair lack of shared concepts with which to make mutual sense of the experience of the patient' (p. 555).…”

Section: Epistemic Injustice In Medicine and Healthcarementioning

confidence: 99%

“…This raises concern about claims of testimonial injustice being committed against a CFS/ME patient with depression, or against a child with CFS/ME, when the requirement for being victim to testimonial injustice is that one's rationality is undermined. Blease et al (2016) recognise and accept the justified level of epistemic privilege that medical professionals have as a result of their training, but emphasise the need for recognition of different forms of epistemic contribution that patients can make, namely knowledge about the lived experience of their condition (p. 552. Knowledge that can be gained by engaging with a patient's lived experience is certainly valuable.…”

Section: The Patient As 'Knower'mentioning

confidence: 99%

Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Byrne

2020

Med Health Care and Philos

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Miranda Fricker's influential concept of epistemic injustice (Oxford University Press, Oxford, 2007) has recently seen application to many areas of interest, with an increasing body of healthcare research using the concept of epistemic injustice in order to develop both general frameworks and accounts of specific medical conditions and patient groups. This paper illuminates tensions that arise between taking steps to protect against committing epistemic injustice in healthcare, and taking steps to understand the complexity of one's predicament and treat it accordingly. Work on epistemic injustice is therefore at risk of obfuscating legitimate and potentially fruitful inquiry. This paper uses Chronic Fatigue Syndrome/Myalgic Encephalomyelitis as a case study, but I suggest that the key problems identified could apply to other cases within healthcare, such as those classed as Medically Unexplained Illnesses, Functional Neurological Disorders and Psychiatric Disorders. Future work on epistemic injustice in healthcare must recognise and attend to this tension to protect against unsatisfactory attempts to correct epistemic injustice.

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Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome

Cited by 141 publications

References 40 publications

Contesting the psychiatric framing of ME/CFS

Contesting the psychiatric framing of ME/CFS

Naked in the eyes of the public: A phenomenological study of the lived experience of suffering from burnout while waiting for recognition to be ill

Striking the balance with epistemic injustice in healthcare: the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

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