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- Convenors:
-
Ann Kristin Augst
(TU Dortmund)
Jesper Petersson (Sociology and Work Science at University of Gothenburg)
Doris Lydahl (University of Gothenburg)
Lisa Wiedemann (Helmut-Schmidt-University Hamburg)
Lisa Lindén (Chalmers University of Technology)
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- Format:
- Traditional Open Panel
Short Abstract
The panel explores how people with chronic post-infectious illnesses such as ME/CFS navigate fragile futures and social absences, asking how STS approaches and patient knowledge can help create more resilient infrastructures of care.
Description
Chronic post-infectious illnesses such as ME/CFS and Long Covid are both a consequence of what has happened and a prefiguration of what is yet to come. These illnesses are often “illnesses you have to fight to get” (Dumit, 2006), meaning they are frequently contested both epistemologically and ontologically within medicine as well as by society at large. Sufferers may be told that it is “all in your head”, a harmful psychosomatic view. For within the gold standard of evidence-based medicine, to suffer from an illness without distinct biomarkers often means to suffer, too, from the absence of medical and societal recognition. Left alone, people must often find ways to navigate their fragile futures and become knowledgeable in managing their conditions and everyday lives.
Chronic post-infectious illnesses are closely connected to well-known STS topics such as patient activism, patient knowledge, lay expertise, self-tracking and infrastructures, as well as standards and classifications. Care in practice is often described by STS scholars as fragile, as zones of tinkering. But what is different about conditions that are not fully medicalised or legitimised? How do these experiences of fragility differ from other forms of ‘chronic living’, and in what ways can established STS approaches be mobilised to understand them? How might STS frameworks need to be intersected with disability studies/crip theory, digital sociology, the sociology of diagnosis and medicine, and research on contested illness?
Building future “chronic care infrastructures” (Langstrup, 2013) recognising long-standing patient knowledge cultures is one pathway towards more resilient futures, in light of the dis_abling potentialities of viruses. Yet these futures must also reckon with the social absences produced by illness. Hence, we invite contributions addressing questions such as: What role can STS play in facilitating interdisciplinary collaboration to co-create less fragile futures in the presence of post-infectious illness?
Accepted papers
Session 1Paper short abstract
This presentation focuses on Long Covid as a temporal reconfiguration in which patient knowledge is a crucial resource in negotiating disrupted pasts, contested presents, and uncertain futures.
Paper long abstract
This presentation examines temporality, Long Covid, and patient knowledge. Temporality is embedded even in the naming of the condition. Long Covid foregrounds that it is lasting, whereas Post Covid implies a transient, time-bounded aftermath. The terminology itself reflects and shapes how the condition is understood.
Empirically, the analysis is based on 43 interviews with Long Covid sufferers in Sweden. The presentation is organised around four interrelated themes, each addressing how sufferers experience time and how they use patient knowledge to navigate frictions between competing temporalities.
The first theme explores how Long Covid generates “biographical disruptions”, unsettling life trajectories and previously taken-for-granted futures. The second examines the temporalities of primary health care and the frictions they produce. Specific attention is paid to tensions surrounding a standardised test used to assess cardiopulmonary functional capacity.
The third theme considers the rhythm of Long Covid, foregrounding pacing and setbacks as central organising features of everyday life. The final theme turns to the future. Here, hope and expectations directed toward biomedicine coexist with uncertainty, recalibration, and, for some, an emerging embrace of slowness.
Together, these themes illuminate how Long Covid is not only a medical condition but also a temporal reconfiguration, one in which patient knowledge becomes a crucial resource for negotiating disrupted pasts, contested presents, and uncertain futures.
Paper short abstract
Long COVID gives rise to a state of temporary chronicity where patients oscillate between hopes of recovery and fears of deterioration. Based on interviews, this study shows how uncertain trajectories compel patients to continuously reimagine what constitutes a livable present and a desirable future
Paper long abstract
In the absence of established clinical knowledge about trajectory and prognosis, Long COVID places patients in a distinctive temporal and existential position, in which illness is neither an acute episode nor a stabilized chronic condition. Patients are informed that they will likely recover, yet clinicians cannot specify when, how, or whether improvement will occur. Drawing on ethnographic interviews with Long COVID patients in Denmark, this study examines how people navigate the reality of a prolonged and unpredictable condition. The analysis shows how patients fluctuate between hopes of bettering and fears of worsening when symptoms evolve, persist, or reappear, and how they continuously reconfigure their sense of self, health, and everyday life through entanglements with medical assessments, rehabilitation programs, bodily symptoms, and social relations. Suspended between expectations of recovery and forms of temporary chronic living, Long COVID emerges as a fragile temporal position in which neither recovery nor chronicity can be fully inhabited, and where questions about what constitutes a livable present and a desirable future are continuously reimagined. By analyzing how temporary chronicity unsettles established distinctions between acute and chronic illness, the paper foregrounds how post‑infectious conditions generate forms of living that are inherently provisional, unstable, and negotiated. Understanding these unsettled futures invites us to rethink how care infrastructures, diagnostic categories, and societal expectations accommodate lives amid medical uncertainty. The study contributes to debates on pandemic illness narratives, suspended temporalities, and chronic living by showing how Long COVID patients navigate fragile futures that are neither fully open nor fully foreclosed.
Paper short abstract
Understanding how knowledge is co-produced and circulated, whose knowledge base is (in)validated and whose voices are acknowledged/silenced, while focusing primarily on people living with complex chronic conditions such as Long COVID and associated conditions.
Paper long abstract
India, the country with the highest population, previously reported high infection and mortality during the global outbreak of the COVID-19 pandemic, and has left millions of people unattended who are living with complex chronic conditions, such as Long COVID and associated health conditions. Even though many are suffering from legitimate chronic conditions and debilities, people with evidence-based morbidity are generally prioritised, while those who fail to get a proper diagnosis are left to negotiate their way on their own, choosing between the currently overwhelmed public healthcare system, private care, or other pluralistic healing approaches. Due to inadequate research and lower prioritisation by public healthcare agencies, the existing guidelines, research, and reports are proving inefficient in translating care into the practice of medical practitioners, increasing the burden on the healthcare system without assuring recovery. While a sizeable proportion of the population is trying to increase visibility through media reporting, digital activism, and individual advocacy, the deep-rooted epistemic inequality in knowledge production is creating a contested terrain of marginalisation and subversion. Based on an ethnographic study in Delhi on people living with chronic illnesses after COVID-19 infection, interviews with healthcare professionals, and advocacy channels situated for the Indian population with Long COVID, this study seeks to understand how contested power creates knowledge, why the logic of biomedicine leaves people unattended after a failed diagnosis, and how patients and professionals negotiate care amidst uncertainty.
Paper short abstract
This presentation examines how Long Covid patient activists engage with and challenge evidence-based medicine. Through evidence-based activism activists mobilise and contest systematic reviews and guidelines to influence knowledge production, clinical practice, and definitions of enough evidence.
Paper long abstract
In 2021, the Swedish network Doctors to Doctors – clinicians who themselves live with Long Covid – published a ‘knowledge overview’ for clinical practitioners. They positioned this initiative as a response to the Swedish authorities being ‘too slow’ to finalise national guidelines. As an example of clinical recommendations 'from below', the overview illustrates how evidence-based medicine (EBM) and its epistemic tools – including clinical guidelines and systematic reviews – are enacted and contested within Long Covid activism.
This presentation examines how Doctors to Doctors and the Swedish Covid Association, a patient organisation representing Long Covid sufferers, engage with and challenge EBM to advance knowledge about Long Covid – including its underlying mechanisms, pathophysiology, and implications for healthcare – and to push for clinical practices informed by the latest available evidence. Drawing on interviews with patient-clinicians and association representatives, as well as reports, debate articles, and guidance for practitioners, I analyse how activists enact ‘evidence-based activism’ (Rabeharisoa et al. 2014). I show how they mobilise Long Covid research, rapid reviews and guidelines from other countries, and findings from related post-infectious conditions, to contest how Swedish authorities define, prioritise, and limit evidence.
By tracing these practices, I highlight how patient activists intervene in the production of Long Covid knowledge, shaping what counts as enough evidence while pushing for urgent action. The study seeks to contribute to STS scholarship on the interplay between patient activism and EBM, exploring how patient activists engage with 'epistemic tools' in a site of emerging and contested knowledge.
Paper short abstract
This paper explores the 'making' of Long Covid and Myalgic Encephalomyelitis/ CFS in the UK context, focusing on explanatory frameworks of causation, differing perspectives on the importance of symptom management versus aetiological clarity and the varying provision and distribution of services.
Paper long abstract
Long Covid (LC) and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) are both contested conditions, with potential overlap in terms of symptoms and some commonalities in relation to patients’ experiences of ‘fighting for’ and the ‘making of’ those conditions. The development of LC services in the UK in the aftermath of the pandemic was conceptualised as a form of health system resilience yet, generally, service responses to people with both these conditions are described as insufficient, unsatisfactory and fraught with inequity.
A major UK study 2026-2028, Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE (HERITAGE) in Long Covid and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, is investigating the potential overlap between LC and ME/CFS and analysing care across different service delivery models, and among individuals without access to specialist care. The study seeks to improve care, provide a better service response to people with either/both conditions, and potentially advance care for other post-infection conditions.
This paper will discuss the proposed and ongoing qualitative work within the wider HERITAGE study. This early work includes understanding the changing landscape of specialist service provision in the UK which, through the integration and reduction of some services, arguably indicates health system resistance to fully addressing these conditions. This paper will explore the role of explanatory frameworks of causation, differing perspectives on the importance of symptom management versus aetiological clarity and the varying provision and distribution of services in the ‘making’ of these conditions.
Keywords: Long Covid, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, causation, resilience, resistance
Paper short abstract
In this presentation, we explore the limits of patients’ knowledge and expertise. We argue that structural barriers, such as financial cuts in healthcare, limit patients’ power and we propose that an STS analysis of the nature of knowledge is necessary for understanding the phenomenon.
Paper long abstract
Patients’ knowledge can be a powerful resource that they can produce, share, and use to promote change. However, the transformative power of this knowledge is shaped and even limited by structural factors. Patients’ expertise can be ignored, dismissed or deemed inaccurate. In this presentation, we explore patients’ knowledge as a double-edged sword. Our analysis derives from an ongoing UK-based project including over 60 interviews with patients with ME/CFS, Long Covid and fibromyalgia, medical professionals, and researchers. We discuss the complex and contradictory processes through which patients build, use, or even hide their expertise. We examine the precarious status of patients’ knowledge and how it can be shaped by the uncertainty that still surrounds these conditions. Both the patients and medical professionals we have encountered have struggled with the elusive nature of these conditions, often diagnosed by exclusion and characterised by a lack of resources and effective treatment options. However, for many, obtaining a diagnosis and having more accurate information about their health difficulties does not lead to any tangible improvement in their lives. In a context of economic retrenchment and reduced resources for healthcare services and patient support, knowing more might not be enough to navigate a complex present and a future made even more fragile by the shifting nature of these conditions. An STS-informed analysis of the social, political and economic dimensions of this knowledge, which is never neutral but partial and situated, can help make sense of the difficulties that patients encounter.
Paper short abstract
In the context of ME/CFS and Long Covid, this paper shows how those affected assemble the disease online amid ongoing contestation, contributing to patient-driven chronic care infrastructures (Langstrup 2013) that unfold through specific interactions with the medical sphere.
Paper long abstract
Accounts of ME/CFS and Long Covid often revolve around narratives of absence: absence of a single biomarker, recognized therapies, or medical recognition. This presentation challenges this narrative by foregrounding the presence emerging from such absence. Focusing on what is present highlights online activities and hashtag activism (Diedrich 2024), especially given higher levels of online engagement among people with ME/CFS compared to other conditions (Shortland 2024).
Those affected collectively participate in what I call an assembling of the disease, e.g., by developing language to signify bodily experiences and by sharing “subjective evidence” (Roth/Gadebusch-Bondio 2022), coping practices, medical advice, or clinical results. I argue that this online gathering contributes to patient-driven chronic care infrastructures (Langstrup 2013), unfolding through specific interactions with the medical sphere. The contribution asks how sufferers participate in the material-semiotic becoming of ME/CFS and Long Covid, and how they collectively co-create ways of doing disease (Mol 2002). Drawing on digital ethnography, interviews, articles, and works of literary fiction, I analyse the role of patient knowledge in these processes and what is specific to ME/CFS and Long Covid compared to other conditions.
Diseases are enacted within chronic care infrastructures, partially self-assembled but, for fully legitimate diagnoses, also already in place. Due to medical and social crises of credibility surrounding ME/CFS and Long Covid, these infrastructures are highly fragile. The talk concludes with reflections on how the online knowledge archive might be more effectively integrated into established medical infrastructures, shaping more resilient futures for people living with ME/CFS and Long Covid.
Paper short abstract
In this presentation I draw on Ursula Le Guin’s essay The Carrier Bag Theory of Fiction to examine how Long Covid destabilizes the mundane. Based on interviews with Swedish sufferers, I explore energy, carrying, and the fragility of life-sustaining practices beyond cure narratives.
Paper long abstract
In this presentation I rethink Long Covid through Ursula Le Guin’s essay The Carrier Bag Theory of Fiction. Inspired by Le Guin’s emphasis on not telling the often-told heroic story of Man in a bloody battle with nature, this time triumphing over a virus, I will instead foreground the fragile life stories of those who did not recover – those who named their illness Long Covid before science even recognized their condition. Drawing on interviews with Swedish Long Covid sufferers, the presentation examines how energy-limiting chronic illness reshapes their lives.
While STS research on care often mobilizes the everyday as a site of tinkering and care and chronic living scholarship emphasizes the temporal reorganization of life with long-term conditions, the analysis suggests that Long Covid exposes something further: the fragility of the mundane itself. Activities such as shopping, walking, showering, or holding a conversation, once taken for granted, become contingent on scarce and fluctuating energy reserves. Through practices such as pacing, energy budgeting, and the ”spoon theory,” sufferers develop forms of patient knowledge to manage depleted bodies.
Building on Le Guin, the presentation distinguishes between the everyday as a site and temporal organisation of practice and the mundane as a normative downgrading of life-sustaining work. Long Covid renders visible how practices classified as trivial are in fact foundational to existence. Rather than stories of cure and defeat, Long Covid carrier stories are stories of endurance, adaptation, and the precarious maintenance of life.