Symposium videos – The Social Impacts of Long COVID

‘The Social Impacts of Long COVID’ online symposium I convened was held on 5 March 2024. It featured presentations from Mexico, the USA, the UK, the Netherlands, Switzerland, Australia and New Zealand.

The videos of the 18 presentations in two sessions (nine presentations in Session 1, nine in Session 2) can be found on YouTube for viewing: Session 1 here and Session 2 here.

The list of presentations is below:

Session 1:

  • Long COVID and the (mis)uses of restitution narrative: Mark D M Davis, Monash University, Melbourne, Australia
  • The long haul: contested histories of Long COVID and ME/CFS in Australia: Kathy Anderson, University of Sydney, Australia
  • Australian experiences of socially and politically mediated determinants of health equity following COVID-19 infection: Danielle Hitch, Sara Holton, Bec Downing, Krishna Vakil, Catherine Bennett, Deakin University, Melbourne, Australia
  • Long COVID in The Conversation – the role of an academic journalism publication in media coverage: Lawrie Zion, Kate Stodart, La Trobe University, Melbourne, Australia
  • Unveiling the socio-health effects of long COVID in adult population in Northwest Mexico: Marisol Grijalva-Castro, Juana María Meléndez Torres, Research Centre in Food & Development, Hermosillo Sonora, México
  • The profound impact of long COVID on societal structures: governmental non-intervention and the role of social determinants of health: Pantéa Javidan, Stanford University, San Francisco, USA
  • The economic burden of long COVID in the United States: evidence from the panel study of income dynamics: Matt Mazewski, Rutgers University, New Jersey, USA
  • The debilitating discourses of long COVID: the public pedagogies of sporting bodies: Matt Ventresca, Georgia Institute of Technology/Australian National University, Canberra, Australia, Mary McDonald, Georgia Institute of Technology, Atlanta, USA
  • We will not be silent: patients speak out about the role of epistemic injustice in erasing evidence of Long COVID in Australia: Pippa Yeoman, University of Sydney, and member of the Australia Long COVID Community, Robin Austin, member of the Australia Long COVID Community, Su Mon Kyaw-Myint, member of the Australia Long COVID Community, Kirsty Yeates, Australian National University, Canberra, member of the Australia Long COVID Community, Ruth Newport, administrator of the Australia Long COVID Community, Australia

Session 2:

  • The Double-Bind: long COVID and the experience of cultural forgetting: Mary Zournazi, UNSW Sydney, Australia
  • A qualitative account of psychological adaptation in long COVID: Joanne Wrench, Austin Health, University of Melbourne, Jacquie Eyres, Austin Health, University of Melbourne, Kerrie Clarke, Austin Health, University of Melbourne, Centre for Mental Health Learning, Victoria, Genevieve Rayner, Centre for Mental Health Learning, Victoria, Australia
  • Validating long COVID with data: self-tracking experiences and practices: Sazana Jayadeva, University of Surrey, UK, Deborah Lupton, UNSW Sydney, Australia
  • Living with the virus: an autoethnography of the traumatic experience of long COVID: Vivienne Matthies-Boon, Radboud University, the Netherlands
  • Establishing a Long COVID Registry – early results and future research avenues: Paula Lorgelly, University of Auckland, Jenene Crossan, Experience & Long COVID Support Aotearoa, Andrew McCullough, University of Auckland, Aotearoa/New Zealand
  • “This isn’t a life”: an analysis of HRQoL in a cohort of individuals with long COVID symptoms: Paula Lorgelly, University of Auckland, Jenene Crossan, Experience & Long COVID Support Aotearoa, Andrew McCullough, University of Auckland, Aotearoa/New Zealand
  • Medical ambivalence and long COVID: the disconnects, entanglements, and productivities shaping ethnic minority experiences in the UK: Damien Ridge, University of Westminster, London, UK, Alex Broom, University of Sydney, Australia, Nisreen A. Alwan, University of Southampton, University Hospital Southampton NHS Foundation Trust, UK, Carolyn A. Chew-Graham, Keele University, UK, Nina Smyth, University of Westminster, London, UK, Dipesh Gopal, Queen Mary University of London, UK, Tom Kingstone, Keele University, UK, Patrycia Gaszczyk, University College London, UK, Samina Begum, University of Westminster, London, UK
  • Long COVID Times: An X (Twitter) informed rhythmanalysis of the complexity of pacing in chronic illness: Sam Martin, UCL/Oxford, Emma Uprichard, University of Warwick, UK
  • Long COVID consultations between medical clinics and modern healing rituals: a case study in Switzerland: Marjolaine Viret, Francesco Panese, University of Lausanne, Switzerland

The Social Impacts of Long COVID Symposium – registration now open

The Social Impacts of Long COVID online symposium is taking place on 5 March, with 18 presentations spread across two sessions – one in the morning, one in the evening (Australian Eastern Standard Time). The program has been organised to best fit the time zones of presenters, who hail from Australia, New Zealand, Mexico, the USA, the UK, Switzerland and the Netherlands. Several presentations involve co-authors who have lived experience of Long COVID.

Registration is free and open to all. Details are here, including list of papers and presenters.

My academic publications for 2023

Books

  • Lupton, D. (2023) The Internet of Animals: Human-Animal Relationships in the Digital Age. Cambridge: Polity.
  • Lupton, D. (2023) Risk (revised 3rd edition). Abingdon: Routledge.

Book chapters

  • Pavlidis, A., Fullagar, S., Nichols, E., Lupton, D., Forsdike, K. and Thorpe, H. (2023) Experimenting with research creation during a pandemic: making time capsules with girls in sport. In Andrews, D., Thorpe, H. and Newman, J. (eds), Sport and Physical Culture in Global Pandemic Times: COVID Assemblages. Cham: Springer, pp. 241-267.

Journal articles

  • Baraitser, P. and Lupton, D. (2023) Photodiagnosis of genital herpes and warts: a sociomaterial perspective on users’ experiences of online sexual health care. Culture, Health and Sexuality, 25(2), 192-205.
  • Watson, A., Lupton, D. and Michael, M. (2023) The presence and perceptibility of personal digital data: findings from a participant map drawing method. Visual Studies, 38(3-4), 594-607.
  • Clark, M. and Lupton, D. (2023) The materialities and embodiments of mundane software: exploring how apps come to matter in everyday life. Online Information Review, 47(2), 398-413.
  • Watson, A., Wozniak-O’Connor, V. and Lupton, D. (2023) Health information in creative translation: establishing a collaborative project of research and exhibition making. Health Sociology Review, 32(1), 42-59.
  • Lupton, D. (2023) Attitudes to COVID-19 vaccines among Australians during the Delta variant wave: a qualitative interview study. Health Promotion International, 38(1). Available online at https://doi.org/10.1093/heapro/daac192
  • Lupton, D. and Lewis, D. (2023) Australians’ experiences of COVID-19 during the early months of the crisis: a qualitative interview study. Frontiers in Public Health (11). Available online at https://doi.org/10.3389/fpubh.2023.1092322
  • Lupton, D., Fuentes, A. and Mingo, EG. (2023) Presente y futuro da la sociologia digital: entrevista a Deborah Lupton. Teknokultura, 20(2), 239-242.
  • McLean, J., Southerton, C. and Lupton, D. (2023) Young people and TikTok use in Australia: digital geographies of care in popular culture. Social & Cultural Geography, online ahead of print. https://doi.org/10.1080/14649365.2023.2230943
  • Butler, E. and Lupton, D. (2023) Bubbles, fortresses and rings of steel: risk and socio-spatialities in Australians’ accounts of border controls during the COVID-19 pandemic. Social & Cultural Geography, online ahead of print. https://doi.org/10.1080/14649365.2023.2240290
  • Lupton, D., Noremberg Schubert, Luz David, M.M., Coelho de Oliveira, D. Arthur Saldanha dos Santos, D.A. (2023) Entrevista com Deborah Lupton. Revista Cadernos de Campo, 23(1). Available online at https://periodicos.fclar.unesp.br/cadernos/article/view/18350
  • Lupton, D., Wozniak-O’Connor, V., Rose, M. and Watson, A. (2023) More-than-human wellbeing: materialising the relations, affects, and agencies of health, kinship and care. M/C Journal. Available online at https://journal.media-culture.org.au/index.php/mcjournal/article/view/2976
  • Boydell, K. and Lupton, D. (2023) Bearing witness poetically in a pandemic: documenting suffering and care in conditions of physical isolation and uncertainty. Medical Humanities, online ahead of print. Available online at https://doi.org/10.1136/medhum-2023-012768    
  • Lupton, D. (2023) Sociocultural dimensions of health: contributions to studies on risk, digital sociology, and disinformation. Reciis: Revista Electronica de Comunicacao Informacao & Inovacao em Saude. 17(4). Available online at https://doi.org/10.29397/reciis.v17i4.4036

Creative works

Reports and briefing papers

My two submissions to the Australian government COVID-19 Response Inquiry

I have just made two submissions to the Australian government ‘COVID-19 Response Inquiry’.

The first submission summarises relevant findings from my four-year ‘Australians’ Experiences of COVID-19′ project. The submission can be downloaded below.

submission-to-the-covid-inquiry-lupton-finalDownload

The second submission, written with Dr Kerryn Drysale, provides relevant findings from our project ‘Diverse Experiences and Understandings of Immunity in the Pandemic Age’. It can be downloaded below.

submission-to-covid-inquiry-2023_lupton-and-drysdaleDownload

The social impacts of long COVID online symposium

5 March 2024

Convened by Professor Deborah Lupton, Vitalities Lab, Centre for Social Research in Health and Social Policy Research Centre, UNSW Sydney

This online symposium examines the social impacts of long COVID across a range of geographical locations and socioeconomic contexts.

Abstracts for possible presentations are invited from researchers on the following topics or any others related to the social impacts of long COVID:

  • How living with long COVID affects people’s identities, social and family relationships, life opportunities and inclusion in society
  • The economic impacts of long COVID
  • How long COVID is affecting workplaces and educational settings
  • How people with lived experience of long COVID are supporting and learning from each other
  • Long COVID activism
  • Media portrayals of long COVID
  • Arts-based and other creative responses to the experience of long COVID

To submit an abstract for consideration, please email Deborah Lupton (d.lupton@unsw.edu.au) with a description of your proposed presentation (around 200 words in length) as well as a presentation title and the name/s and affilation/s of the presenters. Deadline for abstracts: 12 midnight in your time zone, 1 February 2024.

Once I see what time zones accepted presenters are in, I will try to structure the time of the event so that it fits presenters’ (and my) time zone as well as I can.

New report out – Australians’ Experiences of COVID-19 Stage 4 Survey Findings, 2023

I have just published the findings of Stage 4 of my ‘Australians’ Experiences of COVID-19′ project. The summary and key findings from this survey are provided below. The entire 25-page report is available for download here.

lupton-2023-report-of-stage-4-survey_australians-experiences-of-covid-19Download

Summary

The national online survey findings reported in this report are from the most recent stage of the ‘Australians’ Experiences of COVID-19’ project. Conducted in mid-September 2023, this representative survey investigates 1,000 Australians’ experiences of COVID-19 and preventive practices such as vaccination and face mask wearing, their perceptions of COVID-19 risk, who they think are the most trusted sources of COVID-19 information and their views on the federal and their state/territory governments’ current management of the pandemic. The survey results show that the pandemic continues to badly affect Australians in terms of accumulated infections and prevalence of long COVID. Yet respondents were equivocal about the extent to which COVID-19 is a continuing risk to Australians. For the most part they were not strongly supportive of continued preventive actions against infection such as face mask wearing and vaccination. They did not hold high trust in any COVID-19 information source, including medical experts and scientists. Respondents were divided about how well their governments were managing the pandemic.

Key findings

  • More than two-thirds of respondents (68%) reported having had at least one COVID-19 infection to their knowledge. One third (32%) reported one infection. A further 22% reported two infections, with a total of 13% experiencing three or more. Younger people reported more infections than older people, as did those in the middle household income category.
  • Of those who reported COVID-19 infections, 40% had experienced long COVID. More younger people experienced long COVID symptoms, while far fewer people on the lowest household income level reported long COVID.
  • The respondents reported a high take-up of the first three COVID-19 vaccines. The vast majority (93%) responded they had been vaccinated, with 21% having had two doses and 36% reporting three doses. However, after three doses, the proportion drops considerably.
  • Responses were mixed concerning plans for future COVID-19 vaccination. A total of 36% said they were planning to get another vaccine in 12 months, a similar proportion (37%) said no, and 27% were unsure. Those in the oldest age group were more likely to say that they were planning to get a further COVID-19 vaccination, as were people living in a capital city or regional city.
  • Face mask wearing as a personal practice was low. Only 9% of respondents said that they always wore a face mask to protect themselves against COVID-19 when inside public places. A further 26% said that they sometimes used a mask in these settings. This is a combined total of just over one-third of respondents (35%) who were still masking at least sometimes. Younger respondents were more likely to wear face masks than those in the older groups, as were those in the middle income category.
  • Support for face mask mandates for healthcare workers while at work was higher, with 58% in at least partial support. Here again, younger people and those in the middle income category were more supportive of mandating face masks for healthcare workers.
  • Doctors were considered the most trustworthy sources of COVID-19 information (60%), followed by experts in the field (53%), Australian government health agencies (52%), global health agencies (49%), scientists (45%), community health organisations (35%), Australian government leaders (31%) and other healthcare providers (28%). News reports (17%), friends and family (13%), social media (7%) and religious institutions (3%) were considered the least trustworthy. Older people were more likely to trust doctors and Australian government health agencies. The youngest group was the least trusting of scientists and experts in the field. Those in towns were less trusting of Australian government leaders, global health agencies and experts. Those in the lowest income category trusted news sources more than those in the other categories. A greater percentage of respondents in the two higher income categories said they trusted global health agencies.
  • A slight majority (59%) thought that COVID-19 was still posing a risk to Australians: 17% said definitely, while a further 42% saw COVID-19 as somewhat of a risk. This left 28% who did not view COVID-19 as much of a continuing risk, and 13% who thought it not a risk at all. The oldest age group saw COVID-19 as more of a continuing risk to Australians than did the younger groups, as did respondents located in regional cities and towns and those in the middle income category.
  • Respondents were mixed in their assessments of how well their federal and state/territory governments were currently managing COVID-19. They were evenly divided between positive assessments (36% for both federal and state/territory governments) and more equivocal assessments: 34% (federal) and 32% (state/territory). The youngest and oldest age groups were least positive about their governments’ management of COVID-19. People in towns were less positive than those in capital cities or regional cities. People with the middle levels of household income were more positive than those in other income categories.

Make conferences COVID safe

Throughout the COVID pandemic, I have been an advocate for ensuring the events held by universities, including conferences, seminars and talks open to the general public, are safe and accessible. I have repeatedly called for events organisers and venue managers to do their best to make events COVID safe (mostly using Twitter/X to do so, but also sending emails to organisers).

As I wrote in a piece for Croakey this week, misinformation and lack of visibility about the continuing risks posed by COVID is rife across all sectors of life. As a consequence, fewer people are realising just how serious the risks are, even while new viral subvariants continue to emerge and medical research on the impacts of even ‘mild’ COVID infection (long COVID) is continually being published (see, for example, a recent editorial in the British Medical Journal ).

A review article in Nature Reviews Microbiology published at the beginning of 2023 contended that:

In addition to providing education on long COVID to the biomedical community, we need a public communications campaign that informs the public about the risks and outcomes of long COVID.

In the absence of government-run campaigns, have been doing my best to engage in public communication about COVID risk – including to my academic colleagues. Three months ago, I published a set of guidelines on this blog to help organisers ensure that their events would not become super-spreader occasions. These guidelines offer opportunities for event organisers to expand access and improve inclusion not only for people who want to avoid COVID infection but also those who are disabled, are carers, have little travel funding or live in countries where visas for travel to conferences are denied, or who want to reduce their carbon footprint.

Advocating for COVID safe and otherwise more accessible academic events is proving an ever more serious challenge in an information environment (even at universities) in which it seems to assumed that the worst of the pandemic is over and many protections for event attendees have either been dropped or are not adhered to. For example, ‘strong recommendations’ for people to wear masks to protect themselves and each other seem to be little observed.

Over the past year, I had seen many reports of academic events offering no online options for participation. I had heard of many conferences where people had tested COVID positive while attending or soon after returning home. But what is happening at the writers’ conference being held at Middlebury College’s Bread Loaf campus in Vermont, USA, really alarms me. Reports have come through on Twitter/X about over 10% of attendees reporting COVID infections. Those infected are reporting that they have been given little support by the event organisers, have been sent home while ill and infected, and that the rest of the conference was continuing with few mitigations in place to protect those still on site.

Is this the future of academic conferences? Little care taken to protect attendees, covering over the harsh realities of what has happened to those who were infected, expecting people to leave immediately, even when they are very ill and pose a risk to anyone they may come into contact while travelling home?

It seems it is time to redouble my efforts to draw attention to these issues. We need to #MakeConferencesCOVIDSafe. The lives and health of academics and other knowledge workers (such as these talented writers) – across the age span and seniority levels – should not be placed in further jeopardy.

New book now out – ‘Risk’, 3rd edition

The third revised edition of my book Risk, first published in 1999, and second edition published in 2013, is now out. The book has been extensively revised and expanded to take account of the risks that have emerged over the past decade.

A link to the book on Routledge’s website is here and the Google Books preview is here.

Below is the Preface I wrote for the third edition.

In the 1990s and into the early years of the twenty-first century, risk was a key word in both public forums and academic research. The word ‘risk’ was used across social domains and institutions. The sociocultural and political aspects of risk and identifying the reasons for this intensification on risk identification, communication and management were a major preoccupation in the social sciences. The release in 1992 of the English translation of the German sociologist Ulrich Beck’s book Risk Society: Towards a New Modernity was one of the initial impetuses for this academic focus. Simultaneously, however, the scholarship of French philosopher and historian Michel Foucault on the care of the self and the governance of populations, and that of British social anthropologist Mary Douglas on the symbolic dimensions of risk cultures began to be taken up by social researchers and theorists. Their writings were extensively used by others exploring the reasons for why risk had become such a vibrant concept and discussing the implications for social identities, group membership and the management and control of diverse societies.

I wrote the first edition of Risk, published in 1999, for Routledge’s Key Ideas series. In the book, I laid out a schema in which I categorised the Beck approach as ‘the risk society’ perspective, Foucauldian insights as ‘the governmentality’ perspective and Douglas’ scholarship as ‘the cultural/symbolic’ approach. I elaborated on each of these three perspectives and provided examples of how they had been applied to empirical investigations into risk-related understandings and practices. The second revised edition of Risk came out in 2013. In updating the book, I added discussion of some additional theoretical perspectives, discussed some topics that had newly been labelled as risks and included findings from empirical studies that had been conducted since the first edition was published.

It is now a quarter of a century since the first edition of Risk appeared. Over this time, I have noticed that the topic of risk has gradually taken a back seat in social and cultural theory and research, despite its continuing salience to major problems and crises across the world. There have been various ‘turns’ emerging in theory over this time that in some ways have supplanted the ‘risk turn’. The ‘affect turn’ and the ‘materialism turn’ are two key developments. Some scholars have attempted to bring these bodies of theory together by examining the affective or sociomaterial dimensions of risk. However, thus far, this scholarship has largely remained on the fringes of risk research.

In revising Risk for its third edition, I therefore thought it important to make a strong call for a ‘re-turn’ to sociocultural risk theory in a way that incorporates insights from these theoretical developments and addresses the latest catastrophes besetting the world. At the time of writing, the world is faced with frightening disasters and emergencies. The Russian invasion of Ukraine that commenced in early 2022 continues unabated, with no clear end in sight, while the crisis affecting displaced people in other nations such as Syria, Venezuela, South Sudan and Afghanistan continues to create hardship, poor health and uncertainty for these groups. The COVID-19 crisis, confirmed as a pandemic by the World Health Organization in March 2020, is still raging globally. Citizens of the world’s most populous country, China, are facing rapid spread of the disease for the first time, following its leaders’ decision to drop many of the strong prevention strategies that have successfully controlled the outbreak in that nation. The climate emergency and associated risks of environmental degradation, loss of biodiversity, emerging diseases affecting humans and other animals, and devastating natural disasters such as wildfires, floods, droughts and landslides has yet to be properly addressed by governments, national leaders and peak global organisations. There are global food and fuel shortages triggered by the war in Ukraine, other disruptions in supply chains due to the COVID emergency, and many nations face an economic recession and severe cost of living crises.

Together, these emergencies appear so intractable and unsettling as to be labelled as constituting a ‘permacrisis’: a term chosen as Collins Dictionary’s word of the year for 2022. Yet we are living in a world in which the existence of risk is constantly debated, misinformation and disinformation are rife and spread quickly and easily through online media, and where governments and institutions continue to avoid taking decisive action even when there is general agreement that a serious threat exists. Understanding how people, social groups and social organizations understand, respond to and act on threats, hazards and dangers is more important than ever. This third edition has been updated to confront these issues, including the addition of an entirely new chapter that focuses on risk misinformation, scepticism and denial, using the climate and COVID-19 crises as case studies.

Sensory experiments in the exhibition

The More-than-Human Wellbeing Exhibition

In our show, we have four ‘sensory experiments’ which are interactive. We invite people to use their senses of smell and touch as well as sight to engage with these experiments.

These hands-on activities are designed to engage visitors in creative play and making to inspire reflection on the key themes of the exhibition. Visitors are welcome to interact with any of these ‘experiments’ in their own time.

Nature Mood Graphs: Use the test tubes and natural materials provided to demonstrate how you are feeling today (for example, your moods and emotions, health states, wellbeing). Select some materials and pour them into the test tubes at levels that indicate the strength of your feelings.

Essential Elements Feely Boxes (Fire, Earth, Air, and Water): Reach in to touch or smell the materials in the feely boxes. How do these sensations make you feel? What memories do they evoke?

Nature Scents-Making

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Six important guidelines for COVID safe conferences

We are in our fourth year of the COVID-19 pandemic, and at the same time as governments and health agencies are wanting to promote the idea that the emergency phase is over and we should all learn to ‘live with COVID’, many people are still getting infected or reinfected. Faculty and students are attending academic conferences and coming back with new COVID. This has the potential to severely affect their health into the future, as well as posing a risk to the people back home with whom they come into contact.

Conference organisers need to ensure better COVID safe conditions to protect attendees’ health. Here are some guidelines for what should be done.

  1. Offer online options to participate in the conference. Not only will this prevent the spread of COVID through reducing exposure due to travel and conference mingling, it also provides better accessibility for people who are ill or disabled, have caring responsibilities, do not have ready access to conference funding or live in countries where it is difficult to obtain visas to travel abroad. Online options also mitigate against the significant carbon emissions and pollution caused by air travel.
  2. Ask all attendees not to attend the conference under any circumstances if they, or any of their household members, have any infectious illness symptoms of any kind. Ensure that they know that any fees charged for the conference are fully refundable in these circumstances so that people are not tempted to participate because they feel they will have wasted money.
  3. Have rapid COVID tests available free at the venue, and encourage participants to regularly test themselves while at the conference and in the days after the conference.
  4. Only use venues where there are effective systems in place to ensure clean indoor air. Undertake a risk assessment for airborne infection before you book and confirm the venue. Check the quality and effectiveness of all mechanical ventilation systems (HVAC) at the venue for the rate of fresh air delivery and exchange. Determine whether air purifiers or other air cleaning technologies are in place or can be hired for the event. Check if there are windows in the conference rooms that can be opened to allow for fresh air to enter. Consider making sure all doors to the venue and internal rooms can be left open to allow fresh air to enter. Use an air quality monitor (Aranet4 or similar) to check the air quality in the venue spaces periodically throughout the conference, and take steps to improve it if there is a problem. In short, do everything you can to ensure that the venue has clean air systems in place to reduce the risk of airborne viral transmission. See here for CDC’s guidelines on ventilation in buildings.
  5. Preferably, the wearing of respirator masks (N95 or better) should be mandated for all attendees. This will deal with the peer pressure that often stops people from donning a respirator (“I don’t want to look different”, “No-one else is wearing a mask, why should I?”). If this is not possible, respirator mask wearing should be strongly recommended, and free N95s should be made available at the venue for every attendee. Conference organisers should model wearing N95s at all times.
  6. All refreshments should be made available in an outside space only.

Further resources and information here from The COVID-19 Safety Pledge (UK) website