Over 400 million people worldwide experience or have experience Long Covid. Existing research points to patient experiences, public health impacts, a lack of standardised diagnostic and treatment protocols and pathways and the need for patient involvement as key areas of concern. But what is not as clear is the extent to which these priorities are mirrored in the concerns expressed by those researching and living with Long Covid.

To answer this, we carried out a participatory agenda-setting exercise that brought together people with lived experience of Long Covid, family members and carers, healthcare professionals, academics, public and private sector professionals, and volunteers from Long Covid charities and support groups. By centring these diverse voices, our aim was to ensure that future research priorities reflect lived realities, not just academic or clinical perspectives.

We used a participatory research design and conducted two online surveys using purposive sampling. In the first survey, 57 participants were asked to submit their top five research questions or concerns related to Long Covid. This resulted in 253 questions, which we refined into a list of 55 questions grouped by themes. In the second survey, completed by 66 participants, respondents were asked to select and rank their top ten questions from this refined list. From this process, we identified nine priority research questions, each chosen by at least half of the respondents.

Results: Nine key priorities

The final list highlights a broad range of social, economic and health-related concerns. The nine priority areas focus on:

• Treatments, therapies and coping strategies

• Financial support and social security
• The impact of repeated COVID-19 reinfections
• Training and support for healthcare professionals
• Mental health impacts of Long Covid
• The future of research funding
• Airborne transmission of COVID-19
• Developing treatments informed by patients’ lived experiences
• The wider socioeconomic impacts of Long Covid

Many of these themes reflect issues already discussed in UK and international research. However, participants also raised new and underexplored concerns such, demonstrating the added value of involving those directly affected in shaping research agendas. Our survey revealed the value of including the voices of diverse individuals affected by Long Covid and those working in this area and highlighted priorities for social science in the field of Long Covid research.

Cousins, O., Jokela-Pansini, M., Alwan, N.A., Barnard, E., Dainow, J., Dalton, C., Davies, G., Faghy, M.A., Gilmour, E., Patel, I. and Sherwood, O., 2025. Co-creating a social science research agenda for Long Covid. Frontiers in Public Health, 13, p.1654488.

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By Amelia Zabika and Tom Crothers

October 2025

In July 2025 we started a summer internship in the School of Geography and the Environment at the University of Oxford through the UNIQ+ program. Our project focused on trying to better understand the economic impacts of Long Covid. Long Covid is a term used to describe a range of post-acute, long-term health effects that follow SARS-CoV-2 infection. Research to date has mainly focused on large-scale macroeconomic impacts, with estimates suggesting that Long COVID contributed at least 8.6% of the rise in economic inactivity due to ill health last year. Through collaboration with the charity Long Covid Support this project sought to complement this work by generating qualitative insights into what these changes meant for people’s everyday lives.

Currently, around 2 million people in the UK self-report Long Covid symptoms. Many of these people struggle with work, with some having to leave their jobs and becoming increasingly dependent on others (especially family) for support. They face financial struggles due both to loss of earnings and the increasing costs which often accompany chronic illness. They also often feel unsupported by the state, and by friends, colleagues and the wider public.
Between July and August 2025, we conducted in-depth, qualitative interviews with 9 people living with Long Covid and two representatives from advocacy organisations who worked to support them and others like them. Reading across these interviews we drew out four main themes: impacts on work, the challenges of applying for benefits, the additional costs of living with chronic illness and housing insecurity.

Work
‘I had been teaching about five or six years and I was in a new school. I’d moved the September before I caught COVID. And yeah, absolutely loved it. Like a lifelong dream. I miss it terribly.’ (Interview LCAP02)

‘My career that I was retraining for, this councillor career, that’s completely taken away. I feel robbed. I feel robbed by long COVID of my ability to work.’ (LCAP04)

For most people Long Covid significantly changed their work life. All those we spoke to expressed a strong desire to continue working, but many also felt they lacked support from their employer. While participants haven’t mentioned outright discrimination, some felt as after they have requested reasonable adjustments their workplace became more hostile to them. Often their employers and co-workers failed to understand the dynamic nature of Long Covid, which is characterised not by a slow road to full recovery (as is often assumed when people are offered adjustments such as a phased return to work) but by period of feeling better followed by period (ranging from days to months) when symptoms worsen. This lack of understanding was present in the public and private sector. Things were even more complicated for participants who were self-employed and who had limited flexibility to adjust their working hours and roles while sustaining their business.

Benefits
It’s hell applying for PIP. It’s extremely tiring. It took me a couple of weeks to fill in the PIP application form. It required me to, you know, real terrible levels of fatigue and it’s quite humiliating. The level of detail that you must submit, you must submit like doctor’s letters. The level of detail in terms of like things like your ability to wash and look after yourself and stuff.’ (LCAP04)

With earnings falling, employment options exhausted and savings running out, many of our participants had turned to the benefit system in the UK for support. While some managed to successfully navigate the system and received welcome support, for many the application process was challenging, practically, physically and emotionally. Practically, the processes and forms involved were not a good fit for the dynamic nature of Long Covid symptoms, and applicant who had their call with a case worker on one of their good days found it difficult to convey the severity of the challenges they faced. Physically, many found the process of completing the application was hampered by their illness, describing the process as ‘draining’, ‘horrific’ or stating that ‘it’s hell’. Most of the participants required family support and assistance while completing the process. Some were further impacted by what felt like a hostile, judgemental and disbelieving attitude expressed by some case workers. Others noted the intrusive and at times humiliating nature of the information they were forced to disclose.

Additional spending
‘I spent my life savings on medical care and experimentation. I spent every penny I had; spent on private medical care because the NHS couldn’t do anything; on different supplements, different drugs […] I’ve done a lot and I’m still spending. I still spend like £300/£400 a month on supplements just in case they make a difference.’ (Interviewee LCAP01)

One aspect that really came across in the interviews that has not been so prominent in previous research is the range of new costs people with Long Covid find themselves facing. These include increased spending on health and medical care. Finding limited support and treatment options through the NHS, many people with Long Covid have turned to the private sector. Others experiment with supplements and other alternative forms of medicine in the pursuit of even marginal improvements in symptoms. Another key unanticipated cost is transport for those whose Long Covid restricts their mobility. Participants reported how buses did not bring them close enough to their homes, leading to them being forced to take taxis for shorter journeys. Longer journeys that require trains were for some too expensive or required significant planning (which in itself could be exhausting). Collectively these transport costs have prevented people from seeing their family and friends, further increasing their social isolation.

Financial strain and housing insecurity
Our mortgage is due for renewal in two years because we’ve got a five-year deal and we’re not sure we’ll be able to get another mortgage on this because my salary has dropped so much. The multiplier just isn’t there. (LCAP03)

A combination of reduced income and increased costs, alongside general increases in the cost of living across the UK, left many participants facing significant financial hardship, having to budget harder to manage these costs. Many were also concerned about future financial security. While some participants who owned their own homes felt insulated against this to some extent, others, especially those with large mortgages or rent payments, shared uncertainty around housing. One participant had had to sell their house while others had moved back in with family members. This not only highlights the fragility of the economic situation of people living with Long Covid, but also their reliance on informal support in the shape of their family and partners.

Collectively, this research presents the day-to-day financial impacts of having Long Covid in more depth. It highlights the general lack of awareness of Long Covid – within the National Health System, the Department of Work and Pensions and amongst employers, the significant financial costs and burdens it creates for many of those affected and the profound impacts this has had on our participants’ lives and dreams.