Covid Made Long is an UK-wide research project exploring how Covid is impacting young people's lives in the long-term, focusing on those aged 15-25. We are exploring how experiences of Covid, including Long Covid, intersect with health, wellbeing, inequalities, and futures.
Our study also aims to understand and improve the social support and care that is available for young people. A particular focus of our study is understanding how the effects of Covid might make young people's lives more uncertain or precarious.
This project is funded by the National Institutes for Health and Care Research (NIHR). The views expressed are those of the author(s) and not necessarily those of the NIHR.
We are a multi-disciplinary team with expertise in sociology, anthropology, science and technology studies, youth studies, public health, and qualitative methods.
Read our outputs representing young people’s experiences of ongoing health impacts from Covid-19, co-produced with Peer Collaborators with lived experience. This includes a graphic story series, a young person’s guide, and a lived experience glossary.
Our team is a collaboration between academics at LSHTM and Imperial, young people, organisations that work with young people (including Long Covid Kids), and creative partner PositiveNegatives.
Tim
Rhodes
Professor of Public Health Sociology
Tim is a sociologist and qualitative researcher, whose research focuses on health and illness experiences, especially in relation to viral infections like hepatitis, HIV and Covid-19, as well as in relation to issues of drug use and addictions. He is currently involved in research that is investigating the lived experiences of Long Covid among young people, how evidence is used in responses to disease outbreaks, and access to methadone in hospital settings among people who use drugs. He works as a Professor of Public Health Sociology at the London School of Hygiene and Tropical Medicine. Outside of work, he is a keen cyclist, and also interested in photography.
Helen Ward
Clinical Professor / NIHR Senior Investigator
Helen Ward is a Clinical Professor of Public Health at Imperial College and NIHR Senior Investigator, with three decades of experience in research, education and applied public health. Currently leading on the implementation of the REACT study, and directing the Patient Experience Research Centre at Imperial. Helen has also developed pilot qualitative work, linked to the REACT study, among young people with Long Covid aged 18-34, and is involved in longitudinal clinical research among young people and children affected by Covid-19.
Sammie McFarland
health and well-being professional
Sammie McFarland is a dedicated health and well-being professional with a diverse career, from early education to maternity nursing and health coaching. Her passion led to the establishment of her own business empowering women. Sammie's remarkable accolades include the 2023 Coronation Champion title from the Royal Volunteering Service. Despite her family's battle with Long Covid, in 2020 she founded Long Covid Kids, a groundbreaking UK-based international charity for children with Long Covid, offering support and early awareness. The charity's advocacy has raised awareness, initiated pediatric research, and produced valuable resources for affected families. Sammie enjoys being in nature and is a committed cold water swimmer.
Hannah Cowan
researcher
Hannah Cowan is a researcher interested in social inequalities, activism, and health. She has worked with young people for the past four years on the Utopia Now! project, which looks to understand young people's hopes and fears for the future, and bring them into conversation with researchers to help change the direction of medical research. She is passionate about bringing communities who experience injustice and researchers together to help shape futures and find everyday ways of resisting the reproduction of inequalities. Outside of work she enjoys being outdoors, music, and watching rubbish TV.
Zaira Clarke
youth worker / facilitator
Zaira Clarke is a youth worker and facilitator based in South London. She has been working with young people for 8 years, delivering programmes focusing on mental health, social action and mentoring. She is particularly interested in participatory approaches and collaborating with young people to make sure that they have a say in the decisions that affect their lives. Outside of work she enjoys art, volunteering with older neighbours in her community, and exploring London (and beyond) by bike.
Praveena Fernes
Praveena K. Fernes studied political ecology at SOAS University of London and now public health and policy at the LSHTM. Her current PhD project explores the place-based experiences of people who are homeless and seek drug and alcohol services in East London, with a special focus on relations of care. Before this, she studied food landscapes in New Orleans, US and curated an object storytelling project with residents in a dam-affected wetlands community in Rasi Salai, Thailand. Her work strives to advance health equity through transdisciplinary research-to-action partnerships and democratizing the kinds of stories being heard. Praveena is an avid bread baker, hiker, and chai enthusiast.
Eden Byrne
Peer Collaborator
Eden (she/her) is 22, from Northern Ireland, and currently in her first year studying childhood and youth studies through Open University. She also volunteers for a number of different youth charities and organisations including Long Covid Kids and Long Covid Support. In her spare time, Eden enjoys listening to podcasts, reading and spending time with her cats. She became a peer researcher as she is really passionate about ensuring children and young people’s voices are represented and is really interested in the research process.
Cal Bloodworth
Peer Collaborator
Cal Bloodworth is a peer researcher and current PhD student interested in accessibility, activism, and highlighting the lived experiences of disabled people. As a young disabled person themselves, their experiences and related academic interests initially led them to participate in this project and later apply to stay on as a peer researcher. They are passionate about identifying and raising awareness of gaps in support that people with complex conditions and/ or circumstances can fall through. Being a part of this project has been incredibly valuable for them, and they hope to apply what they've learned going forward in their own research. Outside of their academic work, they enjoy fibre arts, digital art, and board games.
William George
Peer Collaborator
Having lived with Long Covid since April 2020 and struggled to get proper help throughout this time, William wanted to be part of a research effort to raise awareness about Long Covid and produce resources to educate others. He hopes that this will encourage better support for himself and millions of others around the world. Outside of being a Peer Collaborator, his interests include computer science, music and film.
Lucinda Leal
Peer collaborator
Lucinda has had Long Covid for 5.5 years and got involved in the project to both advance research and create resources to educate and inform others about Long Covid using artistic outlets, such as the graphic novel. She has had the opportunity to be co-author on a paper, which has been an incredible experience for a young person like herself. Outside of the project, Lucinda loves video games, acting, screenwriting and art. Despite all that this condition has taken from her, it will never take her ability to create.
Advisory groups
Our Project Advisory Group
Our project is driven by a diverse Project Advisory Group, comprised of experts in various fields, including young people's services, Long Covid, and social science. This group also features active participation from young people themselves, ensuring their perspectives are at the forefront of our project's development.
Peer Advisors and Researchers
In addition to our Project Advisory Group, we have established a network of young people with a variety of lived experiences who have offered valuable insights, ideas, and feedback throughout the project's lifecycle. This has included working with a team of Peer Collaborators who have been involved in data analysis, the production of research outputs, and dissemination. You can find out more about our co-production approach and learn more about some of our Peer Collaborators above.
Partners
The project produces multiple resources for use in training, advocacy, and intervention. This is achieved through collaboration with young people, community organisations (including Long Covid Kids and Long Covid Support), and our creative partner PositiveNegatives.
Our approach to co-production
We are committed to involving young people in the design and implementation of our project. We have done this by collaborating with community youth organisations, Long Covid Kids, and Long Covid Support, who have all helped us steer the project as well as directly reach out to young people themselves.
In the initial stages of the study, we facilitated eight one-off consultation sessions with young people recruited through partnerships with relevant community organisations, to ensure those with lived experience shaped the research design and recruitment approach.
Following baseline data collection, we recruited and trained 10 Peer Collaborators who all have experience of Long Covid or other related health impacts from COVID-19. Peer Collaborators are involved in data analysis and the production of research outputs on an ongoing basis. So far we have had 14 sessions which have helped us develop a series of illustrated stories, analyse research findings, and feed into research papers. Find out more about our Peer Collaborators on the Team page.
“As a young person still enduring debilitating Long Covid symptoms, this project has connected me with a network of peers and enabled me to be involved in research. I do not feel that I have access to any other outlet which directly platforms people my age with Long Covid, amplifying and legitimising our stories. I am particularly enjoying recent work involving journal articles and analysing the impact of Long Covid on young people in depth.”
- Juliette, Peer Collaborator
“Being a peer collaborator has been such a positive change in my life. It has allowed me to meet other people my age who truly understand what I’m going through. Discussing various experiences has been invaluable, helping me explore potential coping mechanisms and navigate different scenarios. This has made me feel less alone in what can often be an isolating condition. This research has given me hope that we won’t be left behind as the world tries to move on from Covid.”
- Cal, Peer Collaborator
“It often feels like our voices are not being heard. This study is working to bring greater inclusivity and better treatment for us. The research team want our input at every step to ensure that our lived experiences are accurately represented. They always strive to accommodate any changes we need to work on the project. It’s a great opportunity as finding a job with an energy-limiting condition can be very difficult. I have learned about how research studies are run, and it’s helped me to meet new people”
- William, Peer Collaborator
What we have heard
The young people we have worked with have shared important insights into the challenges they face. We have heard and incorporated a lot of feedback, but some of our key takeaways are as follows:
- Access to care is often difficult—and being taken seriously can be even harder. Young people describe feeling dismissed or disbelieved, facing long waits, and navigating overstretched, fragmented services. Assumptions that “young people aren’t affected by Covid-19” make it even harder to access appropriate support. This makes it even more important for us as researchers to check in with them, to ensure we minimise how what we say can be misconstrued by the media.
- Long Covid has deeply disrupted young people’s lives, yet many are finding creative and meaningful ways to rebuild and remake their worlds.
- When engaging young people with chronic health issues in research, it is important to be mindful of pacing and different energy levels. Offering breaks, being mindful of individuals’ unique pacing strategies, and using clear messaging can be helpful practices.
- Long Covid can intensify existing inequalities—especially when combined with disabling environments, financial stress, and systemic discrimination such as ageism, racism, ableism, and gender bias.
- Peer networks and online communities have become vital sources of connection, support, and information. However, these networks can be fragile and often require significant time and emotional labour to build and sustain—especially when formal support systems are lacking.
How did people take part in the research?
We conducted interviews with 72 young people living in the UK between the ages of 15–25 and experience ongoing health effects from Covid-19 or the pandemic. We were particularly keen to hear from young people who felt they had experienced some form of inequality or injustice, as defined by them. We explored how their experiences of Covid-19, including Long Covid, intersected with health, wellbeing, inequalities, and their feelings around the future, which lasted about 1 hour, were anonymised, and participants received a £20 voucher as a thank you.
We then carried out follow-up interviews with 30 of these participants to see how things changed over time. We also facilitated a further 15 network interviews, where we spoke to members of young people’s informal support networks to understand how they have experienced supporting them.
Our project has developed various lived experience resources. These have been co-produced by young people affected by Long Covid. These resources are available here for download. Please use and share these resources, and if you do share these, or hear of feedback, do let us know! We also have a limited number of print copies, so let us know if you would like access to these by emailing [email protected].
Long Covid Lives: A graphic series
Long Covid Lives is a three-part graphic series which explores the lived experiences of young people living with Long Covid. Part one explores how the three main characters navigate accessing care and support, part two explores the multiple impacts of Long Covid and pandemic on young people's lives, and part three explores how young people adapt and remake their worlds in order to live with Long Covid.
Long Covid: A Young Person’s Guide
This illustrated guide explores what it is like to live with Long Covid as a young person, told from the perspective of those who have lived it. It represents key messages from our research data including: what it’s like living with Long Covid as a young person, the importance of pacing, navigating social life, accessing care and support, and how to be a good ally to someone experiencing Long Covid. The guide includes ‘tips and tricks’, lived experience case studies, and practical advice for young people, parents/carers, and practitioners.
Living with Long Covid: A Young Person’s Glossary
This illustrated lived experience glossary explains medical terms related to Long Covid in an accessible way, accompanied by descriptions of what these symptoms are like and how they feel in young people's own words. This resource might be helpful for anyone wanting to learn more Long Covid experience and key terms.
Our project has produced a number of journal articles, which are open access and free to download. You can read our publications below.
After our first phase of data analysis, we have produced a report for the COVID-19 Inquiry about the ongoing impacts of COVID-19 pandemic on young people’s lives. You can read the report in full.
Vital yet Fragile: Informal Networks of Support Among Young People Navigating Long Covid
Zaira Clarke; Hannah Cowan; Tim Rhodes; Praveena Fernes; A Haines & Lucinda Leal
Young people living with Long Covid face challenges accessing health care and social support. Previous qualitative research in the UK has described the ‘invalidation’ of Long Covid illness experience. It has been said that there is a ‘double invisibility’ produced by narratives that minimise the effects of Covid‐19 among young people, which combine with a generalised lack of awareness of Long Covid itself. In this analysis, we look beyond the well‐documented networks of online self‐help and advocacy to trace how young people navigate, connect and maintain multi‐sited alternative care networks to manage their everyday experiences of Long Covid.
Health Expectations, https://doi.org/10.1111/hex.70611
Reflections on my time as a Peer Collaborator
Eden Byrne
Hi, my name is Eden I’m 22 years old from Belfast Northern Ireland and have been a Peer Collaborator since November 2024, where I share my views to help shape the Covid Made Long project. I have had long Covid for just over 4 years and over that time have experienced a wide range of different symptoms and faced a lot of different challenges and barriers both within education, the medical field and also more widely in society.
My long Covid story
I developed long Covid in February 2022 with a re-infection in October 2023. Prior to getting long Covid I was a black belt in taekwondo, very active and was about to start my social work degree at university. As mentioned, I have had a full range of different symptoms with the main ones being chronic fatigue and chronic pain. Although long Covid has had a significant impact of my life in a negative way, being involved in volunteering and advocacy has really helped me. I’ve also just started my childhood and youth studies course through open university and am really enjoying it.
Why I got involved in Covid Made Long
I got involved in the study towards the end of 2023 as an interview participant as I wanted to share my experiences as a young person living with long Covid and speak about the journey that I had been on and the challenges that I faced, in the hope that it would help other people to feel like they were able to speak out. I had also just recently become a volunteer for Long Covid Support and Long Covid Kids and was enjoying the work that I was doing with them, so I wanted to get further involved and take part in something meaningful.
As the project developed, I continued to give my insight and share my experiences. I became a Peer Collaborator towards the end of 2024 as I was enjoying the project and excited to see what the outputs would be from the findings that we had discovered. I thought that the opportunity to create something meaningful that would help support so many different groups of people, not just children and young people but also professionals, would be really special to be part of.
How I have found the experience of being involved
It has definitely been a positive experience. I have learned a lot about the research process and how to analyse findings, as well as learning how to produce and co design meaningful outputs such as the mini graphic novels. It was also a great way to learn from other young people’s experiences and being part of that really helped me to feel like I wasn’t alone in my experiences as well, which is really important. I definitely developed my confidence over time and I think that I was always given the support to be able to do this. The research team were really supportive and encouraging. I felt like I was being listened to and that my thoughts, ideas, opinions and experiences were valid, which isn’t always the case in some projects. I also felt that the communication was really strong throughout the project and I always knew what was happening with regular updates and how things were being changed to implement our ideas.
Navigating challenges along the way
I think one of the main challenges was when we were creating the outputs to try and reflect as many different experiences as possible. As Long Covid has a lot of different symptoms and people have varying experiences with living with it, it was quite hard to make sure that we tried to encompass as many of the interviews into the characters that we created, especially for the graphic novels. I also think sometimes it was tricky as well to know what to put in and what to leave out, as a lot of what people were saying was really important, but obviously we didn’t want it to be so long that people wouldn’t read the outputs. But I think that we have managed to put some of the key messages across.
My advice for other young people interested in getting involved in research
I would definitely recommend getting involved. I think that we often underestimate the power of our voice as a young person, especially as a young person who has a chronic illness, but all lived experiences and stories are so important. I think if you’re struggling with confidence, I think starting small can really help you to build up this confidence over time. Maybe that’s by sharing through the chat first instead of speaking. I think also if you’re interested, speaking to other people who might’ve been involved in research projects already to find out what their experience was like and to support you to take that first step. I think also speaking to the research team and maybe if there’s other ways that you find it easier to communicate you can get involved in different ways. Confidence definitely comes over time and I know that my confidence has definitely improved as a result of being involved.
Here you will find some questions you might have about ‘Covid Made Long’. If you have any further questions please don’t hesitate to get in touch with us at [email protected].
- What’s behind the title?
The study is based around the idea of 'Covid Made Long' because we are interested in how Covid is impacting young people's lives over time, and is still affecting their presents and futures.
Long Covid is of particular interest because of how it alters young people’s lives at a time when they are making important life transitions. However, we are also interested in the ways covid affects young people’s health and wellbeing beyond Long Covid and lockdown. We are studying how Covid has changed care, welfare, and state infrastructures around communities, and the futures that now seem possible or not for young people aged 15-25.
- Who and what is involved?
In partnership with young people themselves, we have interviewed 72 people (ages 15-25) and 15 people in their social networks. We followed up with 30 young people 6-9 months later to hear how their stories developed over time. We aimed to learn from young people who are experiencing different forms of precarity. We combined interviews with creative participatory methods, involving young people as research collaborators throughout. Find out more about our co-production approach here.
This project has been delivered in partnership with community organisations, including Long Covid Kids and Long Covid Support, as well as creative partner PositiveNegatives. The research has produced materials for use in peer-based and social support interventions as well as for use in training, advocacy, and policy. Read more about our academic publications and lived experience resources.
- Why now?
The UK has adopted a "living with" Covid-19 approach, but Long Covid and the long-term effects of Covid are growing concerns, making futures feel more uncertain. We need to understand how young people cope with the long-term and prolonged effects of Covid, shaped by social and economic challenges.
Our project examines covid not only as an illness (Long Covid), but also as something that has lasting social and material impacts and is entangled with broader social and everyday life.
Our project, guided by young people, will create resources for training, advocacy, and social support. We aim to enhance how community organisations assist young people living with illness in uncertain conditions.
- Why precarity?
The pandemic has revealed how illness magnifies existing social and economic inequalities and equally how inequalities can magnify illness.
Our focus on ‘precarity’ means we are interested in how people’s lives are made more uncertain or less stable, when the right resources and types of support aren’t available. We are interested in how Covid has affected the types of support available and what times, places, or life events now feel safe or precarious.
We are aware that some people’s situations are more precarious than others because of material and social inequalities. We are interested in how Covid has affected different people’s experiences of different types of inequality, and see inequality as something intersectional – where people have different mixtures of inequality and privilege. In particular, we have focused on how young people think about, define, understand and cope with inequalities and precarious lived, and how they have been affected by Covid.
See our academic publications to learn more.
- Who funds the research?
This project is funded by the National Institutes for Health and Care Research (NIHR) with the study reference number 135315. The views expressed are those of the author(s) and not necessarily those of the NIHR.
- Who has granted ethical approval for the research?
This project has been approved by the London School of Hygiene and Tropical Medicine’s Observational Research Ethics Committee, with the reference number 28634.
- How have young people been involved in shaping this research?
We have involved young people throughout the design and implementation of our project. We've conducted over twenty consultations with young people to inform our thinking and worked with a team of 10 peer researchers to co-produce the research with us on an ongoing basis.
Young people have played a key role in shaping the direction of our work—they’ve helped us develop the interview topics, suggested more inclusive and flexible ways for young people to share their stories, and informed our approach through regular feedback sessions. Importantly, we have also incorporated their input into data analysis and research outputs including illustrated stories and academic papers. Their involvement ensures that the research is relevant, respectful, and grounded in lived experiences.
Find out more about our co-production approach here.
If you could benefit from additional support, below are a list of free support services available to you in the UK:
Support for young people
Childline: A free 24-hour counselling service for children and young people up to 19 years old. You can get help and advice about a wide range of issues, call Childline on 0800 1111, talk to a counsellor online, send Childline an email or post on the message boards.
The Mix: If you are under 25, you can contact The Mix for free by phone, text, email or via webchat. Use their phone counselling service or get more information on support services you might need, for all areas of life. Visit their website www.themix.org.uk, or text ‘THEMIX’ to 85258.
Papyrus: Confidential, crisis support for suicidal young people aged 35 and below. For help and suicide prevention advice (24/7) call 0800 068 4141, text 07860039967 or email [email protected].
Support for Long Covid
Long Covid Kids: A charity that advocates for families, children and young people affected by Long Covid and related illnesses. They offer online peer support services for young people to connect with others who understand their experiences. www.longcovidkids.org. See their ‘Educational Toolkit’ for teachers (Videos 1-4) and peers (Video 5) to learn more about Long Covid: www.longcovidkids.org/educational-toolkit
Long Covid Support: A peer support and advocacy group for people living with Long Covid.
www.longcovid.org. They offer a private online peer-support group on Facebook for people with Long Covid and their carers: www.facebook.com/groups/longcovid
Long Covid Physio: An international peer support, education and advocacy, patient-led association of Physiotherapists living with Long Covid and allies. See their website for education outputs for anybody living with Long COVID and people wanting to learn more. www.longcovid.physio/
NHS: The latest NHS advice on Long Covid is available on their website. www.nhs.uk/conditions/long-covid/
WHO: The latest World Health Organisation advice on Long Covid is available on their website. www.who.int. See this factsheet for advice on Long Covid self-management for young people: www.who.int/europe/publications/i/item/WHO-EURO-2023-8018-47786-70552
Support for related conditions
PoTS UK: A UK charity that supports and educates patients, family, friends and healthcare professionals about PoTS by sharing up-to-date evidence and resources. www.potsuk.org
Action for ME: A charity that provides care and support for everyone affected by ME/CFS. They offer Free Support Services for children, young people and adults, holistic Healthcare Services, and an online peer support forum. www.actionforme.org.uk
Mast Cell Action: A UK-based charity supporting people affected by Mast Cell Disease. They offer virtual peer support sessions and supportive resources, and run awareness-raising activities. www.mastcellaction.org/
PANS PANDAS UK: A charity established by parents with children affected by PANS/PANDAS. They offer information, resources and a parent-led virtual support group. www.panspandasuk.org/
Support for carers
Carers UK: The leading national charity for unpaid carers. They support, advocate for, champion and connect carers across the UK. If you have a question about caring you can contact their helpline on 0808 808 7777 from Monday to Friday, 9am – 6pm (including Bank Holidays), or email [email protected]. www.carersuk.org
Carers Trust: Run a network of local carer organisations across England, Scotland and Wales. They offer information, advice, practical support and/ or care in the home to unpaid carers of all ages. See their website to find your local carer service: www.carers.org
Welfare support
SENDIASS (Special Educational Needs and Disabilities Information Advice and Support Service):
Offer a free, impartial, and confidential service offering information to young people with special educational needs and disabilities (SEND) and to their parents and carers. You can find your local SENDIASS service via the Council for Disabled Children website: www.councilfordisabledchildren.org.uk/about-us-0/networks/information-advice-and-support-services-network/find-your-local-ias-service
Citizen’s Advice: Offer confidential advice online, over the phone, and in person, for free. See ‘Benefits’ for information on financial support for sick or disabled people or carers. www.citizensadvice.org.uk
If you are an adult and you are worried about a child or young person:
NSPCC helpline - You can contact the NSPCC Helpline by calling 0808 800 5000, emailing [email protected] or completing our report abuse online form.