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In France, Long Covid gained rapid public and institutional recognition through early alignment between patient collectives, scientific experts, political actors and media arenas. This paper traces how this configuration formed and why its effects proved fragile over time.

Paper long abstract

Emerging from dispersed patients’ testimonies on social media, the category “Long Covid” gained national media coverage within a few months. Unlike conditions such as Lyme disease, endometriosis, and ME/CFS, its publicisation was unusually rapid and involved early collaborations between patient collectives, scientific experts, and health institutions. However, Long Covid’s entry into the public sphere has proven fragile, as medical experts have increasingly disputed what this condition is. This paper analyses this dynamic, drawing on French written press and interviews with journalists, public decision-makers, physicians, and researchers.

We first examine how the credibility of Long Covid was forged during the Covid-19 pandemic. With the support of prominent medical and political figures, patient collectives gained traction online and in the written press, which amplified testimonies, claims, and ongoing studies, thereby increasing pressure in the political arena. This configuration prompted health institutions to recognise the condition and to incorporate patient organisations’ inputs into the drafting of recommendations and clinical guidelines, before biomedical evidence stabilised. We then examine the fragility of this recognition over time, as controversies develop on the aetiology and the physiopathology of the condition, opposing some medical experts who take sides with patient organisations to others who question patients’ experiential accounts. This case shows the importance of socio-technical configurations that either maintain or threaten the recognition of emergent and contested conditions. We suggest that the durability of recognition depends not only on scientific evidence, but also on sustaining alliances and stabilising the boundaries of what is deemed credible explanation under uncertainty.

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Poland’s "Lyme Wars" reveal a crisis of expertise. By framing post-infectious states as active chronic illness, "Lyme-literate" communities challenge official EBM. This paper analyzes diagnostic inflation and commodification of medical uncertainty to propose a resilient, inclusive future of care.

Paper long abstract

Borreliosis is a well-defined bacterial infection. However, the emergence of the "Chronic Lyme Disease" (CLD) narrative has led to the development of a parallel medical market. This approach reconfigures Borreliosis as an enigma-disease, systematically deconstructing evidence-based consensus in all aspects, but its tick-borne causes.

The medical landscape is divided by a sharp medical, legal and professional conflict between the official and state-sanctioned guidelines and the proliferation of non-standardized treatment protocols, primarily the ILADS method. At the heart of this schism is the ontological status of persistent symptoms (e.g. fatigue, muscle pain, "brain fog"). Those symptoms are treated as a post-infectious immunological state by institutionalised medicine, or an active infection by the alternative approach. This distinction entails two conflicting therapies, including a long-lasting, health-damaging and extremely costly alternative protocol.

Poland constitutes a compelling case study of this epistemic friction. There is a very active „Lyme-literate” alternative community, which offers a narrative of hope to patients left alone with a diagnosis of persistent syndromes of a completed therapy. This facilitates the marketing of financially ruining therapies and increases the over-diagnosis of Lyme disease, which currently reaches as high as 90%. The proliferation of the alternative approach has sprinkled heavy criticism from the medical circles and state institutions, which may still not fully address the spreading convictions and misinformation. Addressing the vulnerabilities of patients caught in this "epistemic war" of a contested disease is a foundation for building a resilient future of care, which balances scientific rigor with patient-centered empathy.

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This paper analyzes how physicians interpret persistent symptoms in endometriosis and other controversial illnesses. Thus, psychologization and medical hierarchies can shift certain complaints to the margins of medicine, where complementary and alternative medicine becomes a tolerated resource.

Paper long abstract

This paper examines how healthcare professionals interpret persistent symptoms in controversial illnesses and how these interpretations shape the boundaries of medical legitimacy. Following sociological analyses of medicalization (Zola, 1972; Conrad, 1975), medicine can be understood as a profession that defines and controls what counts as disease and legitimate treatment. However, some conditions occupy ambiguous positions within this jurisdiction, particularly when persistent symptoms remain difficult to objectify biomedically.

Drawing on observations at an expert endometriosis center and interviews with healthcare professionals, this study explores how physicians interpret persistent symptoms in endometriosis and other controversial illnesses, particularly when biomedical explanations remain uncertain.

Research on conditions such as endometriosis, chronic fatigue syndrome, or fibromyalgia shows that persistent symptoms often challenge biomedical frameworks. In such situations, physicians may reinterpret complaints through processes of trivialization, psychologization, or normalization, thereby reshaping their status within the medical field. When symptoms remain difficult to objectify or alleviate, they are increasingly interpreted through psychological, behavioral, or lifestyle-related explanations. These shifts reflect hierarchies of legitimacy within medicine, in which conditions lacking objective markers or reliable treatments tend to hold lower status.

The paper argues that these processes create margins of legitimacy in which complementary and alternative medicine (CAM) can emerge as a tolerated resource, supporting patient self-management and addressing suffering that biomedicine struggles to fully integrate. More broadly, recourse to CAM should not only be understood solely as patient-driven, but also as partly shaped by professional interpretations that relocate certain complaints to the boundaries of medical legitimacy.

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The paper exposes the barriers to diagnosis and treatment of maternal diseases, exposing the epistemic and technological politics behind them and the ways they inform medical practice. It provides recommendations for improving access to health care for these neglected and contested conditions.

Paper long abstract

Women’s health has historically been under-researched. Medical studies have excluded female participants from research into common diseases (cancer, cardiovascular etc.) and have relied on results of trials from male participants to draw conclusions as to female patients regarding their treatment needs, efficacy of drugs, and side effects.

Maternal health comprises a set of female only conditions, which are also under-researched. Conditions such as menopause, endometriosis, fibroids, to name but a few, have been neglected in terms of health research and care services.

The main aim of this paper is to expose some of the barriers to diagnosis and treatment of such maternal health conditions. More specifically, it will analyse these barriers by exposing the epistemic and technological politics behind them and explain how they inform gender discrimination. Further, it will link these to bias in clinical trials and drug development, diagnostic infrastructures (or the absence of them), as well as the dominant clinical practice, which is typically characterised by stigmatisation, dismissal, and obstetric violence (understood as gender-based violence that comprises a range of attitudes and practices female patients come up against in medical settings and in the context of gynaecological examination).

The paper will provide evidence of good practices at EU level and recommendations for raising awareness of these neglected conditions, stressing the urgency to involve female patients in research, as well as the necessity for holistic education and training which will enable practitioners to become more aware of the epidemiology, pathophysiology and psychological aspects of maternal health.

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This presentation explores pacing as a material-semiotic practice of knowing and caring, involving interrelations among suffering bodies, technologies, and medical institutions.

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‘Pacing’ is framed within biomedical discourse as a technique to self-manage chronic pain and fatigue by balancing periods of rest and activity. It is considered the primary means of managing contested diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia, for which there is a paucity of resources for knowledge and care. People with ME/CFS and fibromyalgia are encouraged to avoid doing too much or too little, often by quantifying and monitoring their activities. Pacing is also a way for people to know their illness: to navigate uncertainty in everyday life; visualise their suffering; and communicate its legitimacy to others, including medical professionals and state actors. However, pacing is far from the individual practice that it is often imagined as; it plays out at the intersections between suffering bodies, technologies of care/surveillance, and medical institutions. In this presentation, I explore pacing as a sociotechnical practice of knowing and caring. Drawing from ethnographic research in the United Kingdom, I follow the practice of pacing through the lab, the clinic, into the everyday lives of people with ME/CFS and fibromyalgia, and onto social media. Reframing pacing as a material-semiotic practice opens up its potential to resist, rather than reinforce, capitalist imperatives to maximise productivity and health. The epistemic and embodied resilience that pacing aspires to requires a future where infrastructures, institutions and economies slow down. Only then will bodies that are disabled, pained and fatigued be able to move at the pace they need to live.

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Here I present an ethnographic-informed reflection on the question of whether the contemporary standard immunosuppression-based treatments for autoimmune diseases (such as arthritis, lupus, MS etc.) can be seen as co-constitutive of what Gilles Deleuze conceptualized as ‘societies of control’.

Paper long abstract

In this paper, I present an ethnographic-informed reflection on the question of whether the contemporary standard immunosuppression-based treatments for autoimmune diseases (such as arthritis, lupus, Sjögren syndrome etc.) can be seen as co-constitutive of what Gilles Deleuze conceptualized as ‘societies of control’. For decades, immunosuppressants as careers of this particular therapeutic model increasingly spread as promissory biotechnological innovations within and from the Global North to other countries, in which established biomedicine plays a major regulatory role. In Brazil, for instance, their most expensive forms are subsidised by the government and available at its public health care system. Yet, they remain standing only as palliative resources for immunopathologies, for which a cure, officially, has never been announced.

My reflection is based on a multiplicity of research materials. In my presentation, I primarily mobilize and interpret those ones co-produced through conference attendances of biomedical events, which occurred mostly during the Covid-19 pandemics in multiple places, and medical literature as well. I structure my analysis by focusing on three synergetic biomedical practices. First, the recurrent enunciations of such ailments as chronic, and related tensions between their co-existing distinctiveness and inseparability from each other as variations of pathological autoimmunity. Second, the splitting of people into dividuals capable of harming themselves also on molecular level. Third, the urgings to keep autoimmune symptoms under control through modulation, including those still not manifested after a pre-emptive logic. I suggest that it might make sense to answer positively to the guiding question presented above, and explore related implications.

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Endometriosis remains medically and culturally contested. Based on interviews with patients and activist groups in Germany, this paper shows how experiential knowledge negotiates credibility, contests uterus-centered classifications, and opens space for epistemic resilience in contested diseases.

Paper long abstract

Endometriosis is a chronic condition affecting an estimated 10% of people assigned female at birth—over 200 million people worldwide—yet it remains one of the least researched and most underfunded diseases. Despite growing awareness, endometriosis continues to occupy the status of a medically and culturally contested disease. Medically, key aspects of its etiology and disease mechanisms remain unresolved, and the absence of biomarkers means diagnosis relies heavily on patients’ accounts of pain and energy impairment. Historically framed as a gynecological disorder, endometriosis’ uterus-centered definition marginalizes systemic symptoms and reinforces gendered and heteronormative assumptions about pain.

Culturally, stigma and taboos linked to menstruation, sexuality, and fertility shape how symptoms are recognized and legitimized. Chronic pain is frequently dismissed, contributing to diagnostic delays and medical gaslighting. Within this context of uncertainty, many patients become experts in their own condition, engaging in epistemic labor to render symptoms credible through embodied observation and patient communities.

Drawing on STS scholarship from ignorance studies and the sociology of medical classification, and on qualitative interviews with endometriosis patients and activist groups in Germany, this paper examines how endometriosis has been made visible as an object of medical knowledge. It shows how discursive, material, and political factors—including misogynistic theorizing—shape which forms of knowledge are recognized while others are marginalized. By analyzing patient narratives, the paper traces how experiential knowledge challenges the narrow gynecological framing of endometriosis and advances claims for its systemic recognition, while speculating on what epistemic resilience might look like for contested diseases.

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Despite migrants being disproportionately affected by COVID-19 in Sweden, they are largely absent in post-COVID care. Interviews with stakeholders and migrant community representatives suggest that this absence reflects barriers to care and epistemic marginalization rather than a lack of symptoms.

Paper long abstract

Early in the COVID-19 pandemic, research documented stark racial and ethnic inequalities in infection rates, hospitalisation, and mortality. In Sweden, migrants were disproportionately affected during the acute phase of the pandemic. Yet, when attention shifted to post-COVID, migrants appeared largely absent from clinical cohorts and care settings. This article takes this epidemiological incongruity as its starting point and asks: Where have the migrants gone?

Drawing on the sociology of diagnosis and feminist intersectionality, we analyse how post-COVID has emerged as a diagnosis within Swedish healthcare and how social categories such as race, ethnicity, gender, and class shape its recognition. The study is based on 36 interviews with policymakers, healthcare professionals, researchers, patients and community representatives. Our initial intention was to recruit migrant patients with post-COVID, but recruitment through healthcare settings proved unfeasible due to their apparent absence from post-COVID clinics and primary care. Consequently, we reached out to migrant communities and conducted interpreter-mediated group interviews in Somali, Dari, and Arabic in order to understand experiences of persistent symptoms after COVID-19.

Our findings suggest that migrants’ absence in post-COVID care does not reflect an absence of symptoms, but rather barriers related to language, diagnostic practices, healthcare access, and differing forms of recognition of illness. By foregrounding migrants’ experiences, the article highlights how certain patient groups become epistemically marginalized in healthcare systems. We argue that addressing post-COVID inequities requires attention not only to epidemiology but also to epistemic justice, recognising whose experiences count as legitimate knowledge in the production of medical diagnoses.

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The paper explores how symptom-based endometriosis diagnosis affects the recognition and dismissal of symptoms and the demarcation of illness boundaries. Drawing on interview and ethnographic data from Finland, we trace how symptom-based diagnosis engenders contestation around uncommon symptoms.

Paper long abstract

In recent years, the practices of diagnosing endometriosis have diversified from diagnostic surgery towards symptom-based diagnosis. We examine the effects of this shift on how symptoms are recognized or dismissed and how illness boundaries are demarcated. While endometriosis is defined in clinical literature as the presence of tissue resembling the uterine lining outside the uterus, its symptoms vary widely from menstrual pain to pain during exercise and sex, gastrointestinal issues and pain affecting body parts unrelated to reproduction. In situations where imaging tests cannot verify endometriosis, clinicians and patients are faced with the task of making sense of situated, idiosyncratic and evolving symptoms. Symptom-based diagnosis makes diagnosis less invasive and centers patients’ experiences of illness. However, we argue, it also engenders contestation over what constitutes diagnostically significant symptoms. Although appearing to depart from the standard-driven framework of evidence-based medicine, symptom-based diagnosis nevertheless prioritizes symptoms understood to be typical of endometriosis in biomedical literature and renders less common symptoms contested. Drawing on interview and ethnographic data from Finland, we trace how the possibility of endometriosis is enacted and experienced in clinical encounters. While clinicians see symptom-based diagnosis as a pragmatic approach that often accurately predicts the presence of endometriosis, symptom-based diagnosis may leave patients with uncertainty, even in cases where endometriosis is considered probable. Furthermore, the challenges of diagnosing endometriosis in adolescents highlight the implications of symptom-based diagnosis for care trajectories. We show how the changing basis of endometriosis diagnosis affects what endometriosis is understood to be as a disease.