Chronic fatigue syndrome or myalgic encephalomyelitis remains a controversial illness category. This paper surveys the state of knowledge and attitudes about this illness and proposes that epistemic concerns about the testimonial credibility of patients can be articulated using Miranda Fricker’s concept of epistemic injustice. While there is consensus within mainstream medical guidelines that there is no known cause of CFS/ME, there is continued debate about how best to conceive of CFS/ME, including disagreement about how to interpret clinical studies of treatments. (...) Against this background, robust qualitative and quantitative research from a range of countries has found that many doctors display uncertainty about whether CFS/ME is real, which may result in delays in diagnosis and treatment for patients. Strikingly, qualitative research evinces that patients with CFS/ME often experience suspicion by health professionals, and many patients vocally oppose the effectiveness, and the conceptualization, of their illness as psychologically treatable. We address the intersection of these issues and healthcare ethics, and claim that this state of affairs can be explained as a case of epistemic injustice. We find evidence that healthcare consultations are fora where patients with CFS/ME may be particularly vulnerable to epistemic injustice. We argue that the marginalization of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness. (shrink)

Type 1 diabetes (T1D) is a chronic illness that requires intensive lifelong management of blood glucose concentrations by means of external insulin administration. There have been substantial developments in the ways of measuring glucose levels, which is crucial to T1D self-management. Recently, continuous glucose monitoring (CGM) has allowed people with T1D to keep track of their blood glucose levels in near real-time. These devices have alarms that warn users about potentially dangerous blood glucose trends, which can often be shared with (...) ther people. CGM is consistently associated with improved glycemic control and reduced hypoglycemia and is currently recommended by doctors. However, due to the costs of CGM, only those who qualify for hospital provision or those who can personally afford it are able to use it, which excludes many people. In this paper, I argue that unequal access to CGM results in: (1) unjust health inequalities, (2) relational injustice, (3) injustice with regard to agency and autonomy, and (4) epistemic injustice. These considerations provide prima facie moral reasons why all people with T1D should have access to CGM technology. I discuss the specific case of CGM policy in the Netherlands, which currently only provides coverage for a small group of people with T1D, and argue that, especially with additional considerations of cost-effectiveness, the Dutch government ought to include CGM in basic health care insurance for all people with T1D. (shrink)

This essay brings together critical perspectives from the discrete traditions of artists’ books and the medical humanities to examine artists’ books by three contemporary artists – Penny Alexander, Martha A. Hall and Amanda Watson-Will – that treat experiences of illness and wellbeing. Through its focus on a multimodal and multisensory art form that has allegiances with, but is not reduced to, narrative, the essay adds to recent calls to rethink key assumptions of illness narrative study and to challenge utilitarian approaches. (...) In particular, it draws attention to the aesthetic and imaginative elements of illness communication by exploring how artists’ books represent lived experiences in a distinctively palpable way and offer an “intimate authority” that extends beyond narrative legitimacy or a form of struggle against the medical gaze. By interrogating narrative’s dominance in medical humanities research, the essay further expands awareness of illness experiences that resist conventional forms of representation, and of alternative reflective practices within healthcare education that encourage engagement with both mind and body. (shrink)

Myalgic encephalomyelitis or chronic fatigue syndrome is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations —exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness. However, we identify a common trope in the discourse over ME/CFS: the claim of “militant” (...) patient activism. Scrutinizing this charge, we find no compelling evidence that the vast majority of patients with ME/CFS, or the POs representing them, have adopted any such militant political policies or behaviours. Instead, we observe key strategic similarities between ME/CFS POs in the United Kingdom and the AIDs activist organizations of the mid-1980s in the United States which sought to engage scientists using the platform of public activism and via scientific publications. Finally, we explore the contours of disagreement between POs and the medical community by drawing on the concept of epistemic injustice. We find that widespread negative stereotyping of patients and the marginalization and exclusion of patient voices by medical authorities provides a better explanation for expressions of frustration among patients with ME/CFS. (shrink)

This paper uses a non-ideal theory approach advocated for by Alison Jaggar to show that practices involved with the medicalization of serious mental disorders can subject people who have these disorders to a cycle of vulnerability that keeps them trapped within systems of injustice. When medicalization locates mental disorders solely as problems of individual biology, without regard to social factors, and when it treats mental disorders as personal defects, it perpetuates injustice in several ways: by enabling biased diagnoses through stereotyping, (...) by exploiting and coercing people who are seen as insufficiently competent, and by perpetuating idealized conceptions of choice and control that do not take into account people’s real limitations and the social context of health. Through practices of diagnosis, treatment, and recovery, medicalization can perpetuate injustices toward people who have serious mental disorders. (shrink)

Recognizing that truth is socially constructed or that knowledge and power are related is hardly a novelty in the social sciences. In the twenty-first century, however, there appears to be a renewed concern regarding people’s relationship with the truth and the propensity for certain actors to undermine it. Organizations are highly implicated in this, given their central roles in knowledge management and production and their attempts to learn, although the entanglement of these epistemological issues with business ethics has not been (...) engaged as explicitly as it might be. Drawing on work from a virtue epistemology perspective, this paper outlines the idea of a set of epistemic vices permeating organizations, along with examples of unethical epistemic conduct by organizational actors. While existing organizational research has examined various epistemic virtues that make people and organizations effective and responsible epistemic agents, much less is known about the epistemic vices that make them ineffective and irresponsible ones. Accordingly, this paper introduces vice epistemology, a nascent but growing subfield of virtue epistemology which, to the best of our knowledge, has yet to be explicitly developed in terms of business ethics. The paper concludes by outlining a business ethics research agenda on epistemic vice, with implications for responding to epistemic vices and their illegitimacy in practice. (shrink)

The concepts of disease, illness and sickness capture fundamentally different aspects of phenomena related to human ailments and healthcare. The philosophy and theory of medicine are making manifold efforts to capture the essence and normative implications of these concepts. In parallel, socio-empirical studies on patients’ understanding of their situation have yielded a comprehensive body of knowledge regarding subjective perspectives on health-related statuses. Although both scientific fields provide varied valuable insights, they have not been strongly linked to each other. Therefore, the (...) article aims to scrutinise the normative-ethical implications of patient perspectives in building a bridge to the empirical ethics debates. Three potential fields of tension between the illness and the disease perspective are presented. Consequently, findings from empirical research examining patient perspectives on illness are displayed and the practical implications and associated ethical issues which arise are discussed. This leads to the conclusion that an explicit and elaborate empirical-ethical methodology is needed to deal appropriately with the complex interaction between patients’ views and the medico-professional view of disease. Kon’s four-stage model of normative-empirical collaboration is then applied against the background of empirical data on patient perceptions. Starting from this exemplary approach, the article suggests employing empirical-ethical frameworks for further research on the conceptual and normative issues, as they help to integrate perspectives from the philosophy of medicine with socio-empirical research. The combination of theoretical and empirical perspectives suggested contributes to a more nuanced discussion of the normative impact of patients’ actual understanding of illness. Further empirical research in this area would profit from explicitly considering potential ethical issues to avoid naturalistic fallacies or crypto-normative conclusions that may compromise healthcare practice. Vice versa, medico-theoretical debates could be enriched by integrating subjective views of those people who are immediately affected. (shrink)

When I was a 7 months pregnant medical student, an attending surgeon asked me to which specialty I would be applying. When I replied that I was hoping to match in general surgery, he touched my pregnant abdomen and said, “Not with that you’re not.” I am not alone. Gender bias and discrimination have been shown to negatively impact women surgeons throughout their careers and deter women from even applying in surgical fields.1 Bias against female surgical trainees leads to less (...) operative autonomy and higher dropout rates.2 3 Once faculty, women surgeons are less likely to reach leadership roles.4 Recent studies confirm the author’s assertion that implicit biases create substantial harm. The author has undertaken an important study, conducting in-depth interviews with 46 women surgeons in Australia that identifies four distinct types of bias causing cumulative harm. In all four types of biases: Workplace factors including leave policies and mentorship. Epistemic injustices, or unfair assessments of women surgeons’ credibility by patients and colleagues. Stereotyped expectations. Objectification, implicit biases were seen. While many of the broad factors impeding women in surgery are well known, the author argues that these subtler factors, including both implicit bias and epistemic injustice, have a large impact. The …. (shrink)

In this essay, I argue that certain injustices faced by mentally disabled persons are epistemic injustices by drawing upon epistemic injustice literature, especially as it is developed by Miranda Fricker. First, I explain the terminology and arguments developed by Fricker, Gaile Pohlhaus, Jr., and Kristie Dotson that are useful in theorizing epistemic injustices against mentally disabled people. Second, I consider some specific cases of epistemic injustice to which mentally disabled persons are subject. Third, I turn to a discussion of severely (...) mentally disabled persons who, because they are unable to share information or develop interpretations of shared social experiences, may fall outside Fricker’s discussion of epistemic injustice. Fourth and finally, following arguments given by Kristie Dotson and Christopher Hookway, I define and explain a type of epistemic injustice: intimate hermeneutical injustice that I believe supplements other discussions of epistemic injustice. (shrink)

This article explores the relation among illness, home, and belonging. Through a feminist phenomenological framework, I describe the disorientations of being diagnosed with borderline personality disorder and living with mental illness. This research anticipates the consequences of illness and serious disorientations for a conception of belonging as seamless body–world compatibility. Instead, this article examines how the stability of bodily dwellings in experiences of disorientation can suggest ways of being in the world that are more attentive to interdependency, unpredictability, and change (...) in human experience. I argue that these types of dwellings function as a more capacious and apposite metaphor to account for variations in belonging. This discussion outlines the ethical importance of building worlds that make room for different ways of being at home in and through our interactions with others. Although my discussion does not supply norms for ethical action, I contend that a feminist phenomenology of illness generates saliences and illuminates sensibilities that can transform our ways of being with others. (shrink)

Ill persons suffer from a variety of epistemically-inflected harms and wrongs. Many of these are interpretable as specific forms of what we dub pathocentric epistemic injustices, these being ones that target and track ill persons. We sketch the general forms of pathocentric testimonial and hermeneutical injustice, each of which are pervasive within the experiences of ill persons during their encounters in healthcare contexts and the social world. What’s epistemically unjust might not be only agents, communities and institutions, but the theoretical (...) conceptions of health that structure our responses to illness. Thus, we suggest that although such pathocentric epistemic injustices have a variety of interpersonal and structural causes, they are also sustained by a deeper naturalistic conception of the nature of illness. (shrink)

Human beings as objects, and we are objects inter alia, offer information, even knowledge. And yet, in a society marked by pervasive identity prejudice, even objects do not offer neutral facts. Here, I argue that the harms imposed on those who suffer testimonial injustices cannot be sufficiently understood through the ethical lens of objectification. Such persons are not simply objectified, not simply treated as mere sources of information rather than as informants. Even as objects (not mere objects), they are often (...) unable to testify on their own behalf or testify to true facts of the matter. Rather than follow Miranda Fricker’s argument that testimonial injustices are acts of objectification, I argue that they are better understood as acts of what Ann Cahill calls derivatization. A re-examination of Fricker’s account of the wrong of testimonial injustice as derivatizing rather than objectifying clarifies the wrong of epistemic injustice, reinforces the mutuality of testimonial exchanges where both the speaker and listener are actively engaged and obligated to participate well to succeed, and opens up a discussion of how even when being treated as a source of information, informants can be mistreated. (shrink)

I explain the notion of contributory injustice, a kind of epistemic injustice, and argue that it occurs within psychiatric services, affecting those who hear voices. I argue that individual effort on the part of clinicians to avoid perpetrating this injustice is an insufficient response to the problem; mitigating the injustice will require open and meaningful dialogue between clinicians and service user organisations, as well as individuals. I suggest that clinicians must become familiar with and take seriously concepts and frameworks for (...) understanding mental distress developed in service user communities, such as Hearing Voices Network, and by individual service users. This is especially necessary when these concepts and frameworks explicitly conflict with medical or technical understandings of users’ experiences. I defend this proposal against three objections. (shrink)