Championing global care standards in Long COVID
The COVID-19 pandemic left a lasting impact, with many individuals experiencing persistent symptoms long after the initial infection. This phenomenon, known as Long COVID, continues to pose a significant challenge to healthcare systems worldwide and the daily lives of over 300 million people. Without a sufficient understanding of this illness, health services cannot deliver suitable care. The Leeds Institute of Rheumatic and Musculoskeletal System (LIRMM) at the University of Leeds recognised the urgency of this issue and embarked on groundbreaking research to understand and address Long COVID.
Video summary
Impact
- Knowledge discovery: filled gaps in knowledge and understanding of Long Covid
- Health impact: insights improved treatment and quality of live for those experiencing Long Covid
- Policy impact: research helped to define Long COVID as a clinical condition, leading to global recognition and influencing the establishment of dedicated services and funding.
Key information
- Major funders: National Institute for Health Research, Engineering and Physical Sciences Research Council, Economic and Social Research Council, Medical Research Council
- Partners and collaborators: Leeds NHS Trust Teaching Hospital
- Disciplines: medicine, healthcare, immunology
- Investigators: Professor Manoj Sivan.
The need for comprehensive care
Long COVID affects all organ systems and its impacts are extensive – leading to long-term health issues and poor quality of life. Without a clear understanding and effective management strategies, it will continue to disrupt daily life, work, and overall well-being, with negative repercussions for healthcare systems, economies and society.
Despite this, there was a limited evidence base to support the development of effective solutions. This programme of research, led by Professor Manoj Sivan, set out to fill this knowledge gap by asking: What are the long-term complications of COVID-19? And how can persistent symptoms be measured and managed effectively?
Through the research, Professor Sivan and team hoped to offer insights and solutions that could improve patient care, inform future treatment and healthcare policies, and ultimately enhance the quality of life for those affected.
An integrated research effort for Long-COVID solutions
In the early days of the pandemic, the research team led the UK’s first rapid meta-analysis of previous viral pandemics (including SARS, MERS, and Ebola) to predict the long-term effects of COVID-19 post-infection and the scale of impacts.
Acting on this foresight, they conducted the country’s first longitudinal study on post-COVID symptoms and identified 66% of discharged patients were experiencing persistent symptoms. These findings helped to establish global awareness for what then became known as Long COVID.
Recognising the scale of the emerging clinical need, the team established one of the UK’s first NHS Long COVID services, which followed their proposed integrated, multidisciplinary model of care. They developed and validated the world’s first patient-reported outcome measure (PROM) for the condition—the COVID-19 Yorkshire Rehabilitation Scale (C19-YRS)—used to assess symptoms and guide treatment.
Partnering with ELAROS 24/7, they launched a digital PROM platform to enable remote symptom tracking and real-time data to support clinicians' decision-making. These strong research foundations supported the team in securing a £3.4 million NIHR grant for a new, ‘LOCOMOTION’ study.
This next strand of work brought together 10 NHS sites and nearly 3,000 patients to develop national clinical standards, inform NICE guidelines and pioneer tools like a 10-minute stand test and a structured pacing protocol.
These practices were designed and implemented through the team-led Quality Improvement Collaborative (QIC), whose outputs were published in the BMJ - setting new standards for Long COVID care.
Collaborating across disciplines and communities
The research team collaborated with patients and a diverse range of experts across the different stages of research, including engineers, statisticians, psychologists, and biologists. This multidisciplinary approach was crucial in addressing the complex nature of long COVID.
They also engaged with NHS services, commissioners, policy makers, patient charities, carers, and researchers as participants in the data collection process. By capturing the diversity of experiences and impacts lived as a result of Long COVID, researchers refined their approach to ensure the results were comprehensive, patient-centred and actionable for improving patient outcomes and informing healthcare policies.
An extensive impact on policy and practice
The team’s work has had a significant impact on local, national and international healthcare systems. Their early research was instrumental in defining Long COVID as a clinical condition, leading to global recognition and influencing the establishment of dedicated services and funding.
Their development of the C19-YRS, the first validated patient-reported outcome measure for Long COVID, is now recommended by NHS England, NICE, and WHO. It has become the most widely used tool for assessing the condition, translated into over 40 languages, and its integration into a digital platform has been used by over 60 NHS Trusts (and >20,000 patients).
Their work, as part of the national Quality Improvement Collaborative (QIC), set new standards for Long COVID care across the UK. Innovations developed through this group, including the NASA Lean Test and structured pacing protocols, are now embedded in routine clinical practice.
The collective strands of research have directly informed the development of an integrated care pathway, first implemented in Leeds and later adopted nationally, as reflected in NHS England commissioning guidance and NICE clinical guidelines. The team’s leadership has had global reach, with Professor Manoj Sivan appointed as Consultant for COVID-19 Rehabilitation by WHO Europe. These efforts have contributed to international guidance and WHO self-management resources which have been translated into all official UN languages and used worldwide.
The project's success was recognised at the University of Leeds Research Impact and Engagement Awards 2024, taking home a prize for ‘mature health impact’.
Lessons learned and future directions
The LIRMM team’s work revealed the true scale of post-infection conditions (PICs), with Long COVID alone affecting over 300 million people globally. This highlighted a major gap in research and care for long-term post-infection conditions like Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia, which together impact more than 5% of the world’s population.
A key lesson was the power of timely, multidisciplinary collaboration. Bringing together the right expertise enabled rapid, meaningful impact—establishing the University of Leeds as a global leader in this emerging field.
“The field of post-infection long-term conditions has always remained mysterious, neglected, poorly understood, stigmatised and poorly funded,” said Professor Sivan.
“The pandemic has helped in many ways validate the condition and draw the attention of clinicians and researchers. We hope there will be more work in this area to help improve the lives of millions of individuals globally suffering from these conditions and make us better prepared for future pandemics.”
Moving forward, the team will develop a clinical research framework that integrates basic science, clinical practice, digital tools, health services and personalised medicine. Their goal is to expand research capacity, attract new talent and lead future innovation in PICs.
The pandemic has exposed longstanding neglect and stigma in this area. Now is the time for governments and funders to recognise the need, invest accordingly, and embed post-infection conditions into pandemic preparedness and global health strategies.