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Approximately 1 in 10 people with COVID-19 continue to experience symptoms and impaired quality of life beyond 12 weeks.

The University of Birmingham today launches a major new £2.2m government-funded research project to improve the treatment, causes and symptoms of so-called Long COVID in non-hospitalised patients.

The two-year project, funded through the National Institute for Health Research (NIHR) and UK Research and Innovation (UKRI), follows a UK-wide joint research call to fund ambitious and comprehensive Long COVID research.

Approximately 1 in 10 people with COVID-19 continue to experience symptoms and impaired quality of life beyond 12 weeks, which is known as ‘Long COVID’.  Common Long COVID symptoms include, extreme tiredness, shortness of breath, chest pain or tightness, ‘brain fog’, insomnia, heart palpitations, dizziness, pins and needles, joint pain, depression, anxiety, tinnitus, earaches, nausea, diarrhoea, stomach aches, loss of appetite, a high temperature, cough, headaches, sore throat, and changes to sense of smell or taste.

Through a partnership with the Clinical Practice Research Datalink using electronic GP records, the University of Birmingham-led team will identify and recruit thousands of non-hospitalised patients with Long COVID who have had symptoms for 12 weeks or longer to a major clinical digital study.

At the heart of the study will be the use of a digital platform, called Atom5™ from med-tech company Aparito Limited, which will be configured for the study by experts from the University of Birmingham with patient input. Participating patients will be given access to the digital platform, allowing them to self-report symptoms, quality of life and work capability.

A sub group of patients will receive blood and other biological tests to understand the immunology of Long COVID, and will wear a device that will measure their heart rate, oxygen saturation, step count and sleep quality.

Using their findings, the researchers will co-produce with patients a targeted intervention for Long COVID, tailored to individual patient need. Delivered remotely in the community, via the Atom5™ app, it will provide critical support and information to empower patients in self-managing Long COVID. In addition, they will provide tailored resources to support symptom management and nurse-led support for those with the severest symptoms.

The researchers will also use the digital platform to assess whether the treatments and supportive interventions reduce symptoms, improve quality of life, and are good value for money.

All data gathered will be used to help the scientists characterise the symptoms, health impacts, and underlying causes of Long COVID syndromes in non-hospitalised patients – providing invaluable insight not currently available.

Individuals with Long COVID frequently report experiencing diverse physical and psychological symptoms beyond 12 weeks that can be extremely debilitating. People living with Long COVID have indicated that they feel abandoned and dismissed by healthcare providers, and receive limited or conflicting advice. Meanwhile, neither the biological or immunological mechanisms of Long COVID, nor the rationale for why certain people are more susceptible to these effects, are yet clear, limiting development of therapies. It’s essential we act quickly to address these issues.

Dr Shamil Haroon, Clinical Lecturer in Primary Care at the University of Birmingham

Co-Principal Investigator Melanie Calvert, Professor of Outcomes Methodology and NIHR Senior Investigator at the University of Birmingham, added: “A large number of individuals that have had COVID-19 experience long-term effects on their health and well-being. 

“Our study aims to reduce their symptom burden and improve quality of life. Ultimately, people want to be able to enjoy life again and spend time with their friends and family.

“It is clear that there is an urgent need for research to help explain the causes that drive the longer-term health effects of COVID-19 so that we can optimise patient care.

“Our digital trial platform in primary care will not only facilitate research exploring the underlying cause of Long COVID, but also the evaluation and co-production of suitable interventions.”

Health and Social Care Secretary, Matt Hancock, said: “I am acutely aware of the lasting and debilitating impact Long COVID can have on people of all ages, irrespective of the extent of the initial symptoms.

“Fatigue, headaches and breathlessness can affect people for months after their COVID-19 infection regardless of whether they required hospital admission initially.

“In order to effectively help these individuals we need to better understand Long COVID and identify therapeutics that can help recovery. This funding will kick-start ambitious projects to do just that.”

Chief Medical Officer for England and Head of the NIHR, Professor Chris Whitty, said: “Good research is absolutely pivotal in understanding, diagnosing and then treating any illness, to ease symptoms and ultimately improve lives.

“This research, jointly funded through the NIHR and UKRI, will increase our knowledge of how and why the virus causes some people to suffer long term effects following a COVID-19 infection - and will be an important tool in developing more effective treatments for patients.”

Health Minister, Lord Bethell, said:“The UK is at the forefront of scientific research and innovation when it comes to the treatment of COVID-19. This work is vital in helping us to build on our knowledge and improve the treatment of the longer-term impacts of the virus.

“This research will make the best use of available evidence to help us identify the causes, the consequences and most importantly the best treatments to help people recover from COVID-19 in the long term.”

The University of Birmingham-led project will include a Lived Experience Advisory Panel (LEAP), made up of a group of long COVID patients, who will work with researchers and clinicians to develop the research from a patient perspective. LEAP member and Long COVID patient Dave Stanton, aged 74, welcomed the research.

The RAF veteran said: “COVID-19 has knocked me sideways, with a long and debilitating battle since initially becoming ill in March last year, including having to have surgery to replace my pacemaker following additional damage the virus has caused to my heart.

"Each day is baby steps in terms of recovery, but almost one year on I am still battling a myriad of symptoms from memory loss to difficulties breathing, pins and needles, and immobility.

 "I am delighted to be part of this research project, which will give hope to so many out there who are, like me, struggling with the longer term crippling effects of this virus.”