Click the star to add/remove an item to/from your individual schedule.
You need to be logged in to avail of this functionality.
Log in
- Convenors:
-
Nora Engel
(Maastricht University)
Janneke M.L. Kuiper (KU Leuven)
Ine Van Hoyweghen (KU Leuven)
Send message to Convenors
- Format:
- Traditional Open Panel
Short Abstract:
This panel invites papers on how post-infection-disease states, amongst which long COVID, provide new insights into our understanding of care and cure, experiences of uncertainty, the politics of recognition and diagnosis, and the co-production of illness concepts and knowledge.
Long Abstract:
COVID-19 has brought post-infection-disease or postacute sequelae (ongoing, relapsing, or new symptoms present long after infection) into the spotlight as something nebulous, insidious, and so far with poor pathophysiological understanding. Long, or post, COVID patients have successfully moved this concept from patient experience to widely accepted disease and even diagnosis, securing attention and resources. Other post-infection-diseases states, such as Post Tuberculosis Lung Disease, are characterized by clearer clinical links between pathology-impairment-disability, but have not been made a priority in healthcare policy, practice or research. Common issues across post-infection-diseases that deserve scrutiny and offer analytical scope for STS include: the prevailing uncertainty for those affected, the politics of recognition and diagnosis, the variable recovery, residual impairment and recurrence that challenge our understanding of cure and care, and the new forms of co-production of illness concepts when much is still unknown.
This panel attends to emerging forms of knowledge-making on post-infection-disease, how they are configured, problematized, measured, cared for and addressed through activism, research, product development, interventions, policymaking, or care provision. We invite papers on and beyond long COVID, working across different post-infection-disease states, including persistent viral, parasitic or antibiotic infections, chronic infections, and recurrent infections. Papers could focus on (but are not limited to):
• Illness experiences, the construction of communities with shared medical identity, and new forms of organized patient advocacy
• The making of clinical boundaries and standards/guidelines of post-infection-disease and potentially contested illnesses in the face of uncertainty and/or ignorance
• Ontological politics and the social epidemiology of post-infection-disease: who are (not) being served and heard? the co-production of other vulnerabilities and inequalities
• Possible transformations of our understanding of short-term infections and cure and the implications for research and practice
• New forms of STS inspired medical action that challenge the normative role of clinical evidence
Accepted papers:
Session 1Hannah Cowan (London School of Hygiene and Tropical Medicine) Praveena Fernes (The London School of Hygiene and Tropical Medicine) Kari Lancaster (Goldsmiths University of London) Tim Rhodes (LSHTM) Zaira Clarke (London School of Hygiene and Tropical Medicine)
Short abstract:
We look at lived experiences of covid as ‘made long’ as ‘dis-ease', through different forms of embodied precarity. Covid made long as 'dis-ease' not only troubles biomedical versions of Long COVID but ideas of ‘post infectious disease states’, requiring us to re-think care and care infrastructures.
Long abstract:
Whilst emergent and multiple in its constitutions, part of the making of Long COVID, including in patient advocacy, has been to ‘fit’ a diverse and unpredictable set of illness experiences within a biomedical frame to access medical infrastructures of care. In this paper, we trace varieties of Long COVID, as accounted in situated lived experiences of young people in the UK, looking particularly to divergent covid experiences that are entangled with intersectional forms of precarity. Our analysis troubles Long COVID the ‘disease’, and looks to the way this categorisation omits the way in which covid is ‘made long’ as ‘dis-ease’ through embodied precarities in time. Covid made long as dis-ease, we argue, allows us to attend to the multiple flows of discomfort and altered states that illness can generate in bodies and ecology, human and otherwise. In doing so, we also see that care infrastructures (within and beyond the biomedical) can not only be precarious, but can make and remake new harms that shape and extend different constitutions of long covid. We therefore trouble notions of where and how care is done and sought. Indeed, we also look to how covid has helped constitute what Power et al. (2022) calls ‘shadow care infrastructures’, pushing us to think about how care might be made by, as well as made to counteract dis-ease. Taken together, we suggest that covid made long as dis-ease not only troubles biomedical versions of Long COVID but also ideas of a ‘post infectious disease state’.
Muthoni Mwaura (Charles Darwin University and Maastricht University) Sarah Cassidy-Seyoum (Maastricht University)
Short abstract:
Vivax malaria treatment requires two drugs to clear the parasite from an individual’s system-a treatment combination called “radical cure”. Using postcolonial STS theory we investigate the origin of the term “radical cure” and its appropriateness to modern vivax case management in endemic settings.
Long abstract:
Treatment for vivax malaria requires a combination of two drugs to clear the parasite from an individual’s system—a treatment combination which is called “radical cure,” a term that originated in post-WWII, malaria research in the United States. However, the use of the term since the 1950s has yet to be questioned in its applicability to the current context of malaria care in endemic countries. Using postcolonial STS theory we investigate the origin of the term “radical cure” and its appropriateness to modern vivax care in endemic settings. Using changes in vivax case management in Cambodia and Ethiopia, two epidemiologically different malaria endemic countries, as a case study, we explore the disease and treatment experiences of individuals infected with vivax malaria against the backdrop of policymakers’ expectations of radical cure. Patient experiences highlight the chronic nature of vivax malaria, while policymakers expect “radical cure” to be the solution to recurrent vivax malaria. However, the risk of re-infection despite preventative measures not neutralised by radical cure, socio-economic insecurity of at-risk populations, and infrastructure required for the treatment to be accessible and effective, do not allow for radical cure to be a cure, but instead a multifaceted complexity for patients and the health system alike. This daily reality stands in opposition to a vision of the accelerated malaria elimination promised by radical cure, calling for a more conservative understanding of the treatment. We argue the term “radical cure” should be retired to give way to a decolonized and holistic understanding of vivax care.
Janneke M.L. Kuiper (KU Leuven) Ine Van Hoyweghen (KU Leuven) Luca Marelli (University of Milan)
Short abstract:
Building on an analysis of the different experiences, paradigms, and advocacy movements around post-COVID-19, in this paper we map the post-COVID-19 route to disease acceptance. In doing so, we provide valuable insight into the politics of diagnosis(-making).
Long abstract:
COVID-19 has brought an unprecedented amount of attention to post-infection disease or post-acute sequelae (ongoing, relapsing, or new symptoms present long after infection). Where many of these diseases have long struggled for attention and recognition, the widespread experiences of post-, or long, COVID-19 have relatively quickly led to a significant level of acceptance. Whilst many patients still feel unseen, unheard, and stigmatised, an increasing number of resources are being directed towards a better understanding of post-COVID-19. With a visible patient advocacy movement and different hypotheses on the pathogenesis and core symptoms, the diagnosis is currently being constructed. Building on an analysis of the different experiences, paradigms, and advocacy movements around post-COVID-19, in this paper we map the post-COVID-19 route to disease acceptance. Combining a document analysis with preliminary empirical findings, we focus on the emerging forms of knowledge-making and changing configurations between the different medical stakeholders, lay or patient experiences and advocacy, and (online) media in the co-production of this new illness concept. The current construction of the post-COVID-19 diagnosis, and its appeal to other patient groups that are seeking validation, provides valuable insight into the politics of diagnosis(-making). The strategic (re)positioning of post-COVID-19 and adjacent illnesses (e.g., other contested and post-infection diseases such as myalgic encephalomyelitis/chronic fatigue syndrome) deserves scrutiny to understand how diagnoses are shaped when much is still unknown and uncertain. Considering post-COVID-19’s high prevalence, how the diagnostic boundaries will be drawn will significantly impact the distribution of resources and our understanding of illness, cure, and care.
Doris Lydahl (University of Gothenburg) Lisa Lindén (Chalmers University of Technology)
Short abstract:
This presentation focuses on temporal aspects of Long Covid patient knowledge enactment and mobilization, drawing from interviews with key figures in the Swedish Covid Association and an advocacy and support network of doctors with Long Covid.
Long abstract:
In this presentation, we present a larger project on Long Covid, patient knowledge and epistemic communities. The project examines how Long Covid sufferers assemble, produce and mobilize diverse sets of knowledge – what we define as “patient knowledge” (Pols 2014) – about their emergent condition, and considers how this knowledge is recognized by the medical community and its wider circle of actors.
Our focus in this presentation centres on the dynamic mobilization of patient knowledge to propel advancements in the care, management, and research of Long Covid. We delve into the temporalities of patient knowledge, emphasizing how it evolves and its subsequent mobilization. To achieve this, we leverage insights gained from interviews with board members of the Swedish Covid Association, a patient organization, as well as an advocacy and support network of doctors experiencing Long Covid.
The presentation aims to shed light on the temporal intricacies of patient activist mobilization efforts, highlighting their endeavours to influence the timing and pace of advancements in care, management, and research related to Long Covid.
Olga Loza (University College Dublin) Susi Geiger (University College Dublin)
Short abstract:
This presentation will recount one researcher’s experiment in creative and collaborative research with people living with chronic energy-limiting conditions: the origins of the project, its logistics, some outcomes, and the potential for further activist work it has opened up.
Long abstract:
Among people living with chronic, energy-limiting, post-infectious diseases, definitions of health and illness, of care and recovery fracture and come undone, become vulnerable to contestation, negotiation, change. It is at these disjunctures, in these ruptures that new meanings can emerge. This presentation recounts my attempts to forge new meanings together with people living with myalgic encephalomyelitis (ME) and Long Covid. It is based on a creative and collaborative project that emerged from my work with the ME community, as well as an interest in activist research that seeks to make meaningful change, to participate in transformative action, alongside others. In this part of my research project, I asked people living with ME and Long Covid to submit their responses to the prompt: “What is living with chronic illness like for you?” Submissions could – and did – take a variety of forms, and included a knitted item, photographs, an embroidery, poems, collages, an animation, and more. We then met in groups of three or four to talk about the responses submitted by each participant of that group. I came to think of those meetings as affective encounters in which, yes, participants shared their experiences and interpreted each other’s submissions, but also delighted in each other’s company and understanding, forged new relationships, found commonalities across distance and time. Ultimately, this experiment in collaboration has surfaced a buoyant, defiant creativity, a person-centred way to research with people living with energy-limiting illness, and hopefully a set of powerful activist tools.