£18.5 million to tackle ‘Long-COVID’ in the community

Woman unwell lying on a sofa with a blanket

UK Research and Innovation (UKRI) and the National Institute for Health Research (NIHR) are funding four new research studies into ‘Long-COVID’ in the community.

The studies aim to better understand and address the longer-term effects of COVID-19 on physical and mental health.

People experiencing the longer-term effects of COVID-19 – what is known as ‘Long-COVID’ – will benefit from research worth £18.5 million. The research will help better understand the causes, symptoms and treatment of the condition.

The funding will be given to four studies to identify the causes of ‘Long-COVID’ and effective therapies to treat people who experience chronic symptoms of the disease.

The projects were chosen following a UK-wide call to find ambitious and comprehensive research programmes. The programmes will help address the physical and mental health effects of COVID-19 in those experiencing longer-term symptoms but who do not require admittance into hospital.

What is ‘Long-COVID’?

‘Long-COVID’ can present with clusters of symptoms that are often overlapping and/or fluctuating. A systematic review has highlighted 55 different long-term effects but common symptoms of ‘Long-COVID’ include:

  • breathlessness
  • headaches
  • cough
  • fatigue
  • cognitive impairment or ‘brain fog’.

Approximately one in 10 people with COVID-19 continue to experience symptoms and impaired quality of life beyond 12 weeks, what is known as ‘Long-COVID’.

‘Long-COVID’ may comprise of several distinct syndromes not yet fully understood and these studies will help solve this.

Living with ‘Long-COVID’

Amy, 27, has been experiencing ongoing breathing problems after first contracting COVID-19 three months ago. She said:

I expected to be fully recovered within two weeks, but I actually isolated for three weeks because I just didn’t feel comfortable going out, I was still really poorly.

At my age, I didn’t expect to suffer symptoms for more than just a few days. Feeling that poorly for that long, hearing all the horror stories and things, I wondered if I would actually go back to normal.

I exercise a lot and it was really scary thinking that I might not actually get back to that again. It’s quite shocking to me actually that three months on I’m still not really myself.

Monique, 32, has ‘Long-COVID’ and was involved in the process of deciding which research to fund. She said:

As a relatively young, fit and healthy person I have been surprised to suffer from the debilitating effects of long COVID.

I was very keen to participate in the funding process of long COVID research and hope the work from these studies will lead to furthering understanding and treatment for this new disease.

The impact of long COVID is being felt on a global scale and will influence times to come. It is crucial that more funding for research continues in this area.

Further funding

UKRI and the NIHR are also jointly funding major studies to characterise acute and longer-term disease in hospitalised patients.

The Post-HOSPitalisation COVID-19 study (PHOSP-COVID) was backed by £8.4 million in funding. It looks into the long-term physical and mental health implications of COVID-19 to support the development of new measures to treat NHS patients with coronavirus.

Both funders will continue to consider research proposals on ‘Long-COVID’.

Professor Fiona Watt, Executive Chair of the Medical Research Council, part of UKRI, said:

There is increasing medical evidence and patient testimony showing that a significant minority of people who contract COVID suffer chronic symptoms for months after initially falling ill, irrespective of whether they were hospitalised. These four large-scale projects will work with affected individuals to better understand and address these debilitating long-term impacts.

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 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 irrespective of whether they required hospital admission initially.

In order to effectively help these individuals we need to better understand long COVID and this funding will help kick-start four ambitious projects to do just that.

Further information

Project details

An independent panel of research experts, patients with ‘Long-COVID’ and members of the public were involved throughout the process of deciding which research proposals to fund.

REACT long COVID (REACT-LC)

  • Project lead: Professor Paul Elliott, Imperial College London
  • Funding: £5.4 million over three years

This project aims to characterise and better understand the genetic, biological, social and environmental signatures and pathways of ‘Long-COVID’. It will also identify factors affecting why some people experience long term health effects of COVID-19, while others do not.

To date, most research on ‘Long-COVID’ has been in hospitalised patients. The researchers will survey 120,000 people in the community who have taken part in the REACT study. Over 30,000 participants from REACT who tested positive for COVID-19, plus 90,000 who tested negative, will be invited to take part.

Participants will be sent a survey about their health, symptoms and experiences. Participants with ‘Long-COVID’ will be asked to join a panel to provide regular updates; while 60 will be invited for in-depth interviews. The researchers will develop a set of patient-reported outcomes that reflect the symptoms most important to people living with ‘Long-COVID’ in the community.

Researchers will also invite up to 8,000 people with positive tests, including at least 4,000 with ‘Long-COVID’, for health tests and samples to test for genetic and other biological markers. This will help researchers understand mechanisms causing persistent symptoms and may point to possible treatments.

Therapies for long COVID in non-hospitalised individuals: from symptoms, patient-reported outcomes and immunology to targeted therapies (The TLC Study)

  • Project lead: Dr Shamil Haroon and Professor Melanie Calvert, University of Birmingham
  • Funding: £2.3 million over two years

This project aims to identify which treatments are most likely to benefit people with particular symptoms of ‘Long-COVID’ and test supportive treatments to improve their quality of life. The researchers will identify around 2,000 patients with ‘Long-COVID’ from GP records. Study participants will be invited to use a digital platform to report ‘Long-COVID’ symptoms/quality of life.

A subgroup of around 300 patients will receive blood and other biological tests to understand the immunology of ‘Long-COVID’. They will wear a device that will measure their:

  • heart rate
  • oxygen saturation
  • step count
  • sleep quality.

The researchers will review evidence for ‘Long-COVID’ treatments, including drugs or supportive interventions (for example for mental health or tiredness). Working with patients, doctors and other experts, the researchers will recommend treatments that should be tested in ‘Long-COVID’ patients. They will co-produce a targeted intervention for ‘Long-COVID’, tailored to individual patient need.

This will be delivered remotely in the community, via the Atom5TM app, providing 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
  • are good value for money.

Characterisation, determinants, mechanisms and consequences of the long-term effects of COVID-19: providing the evidence base for health care services

  • Project lead: Professor Nishi Chaturvedi, University College London
  • Funding: £9.6 million over three years

This project aims to provide an evidence base for healthcare services to define what ‘Long-COVID’ is and improve diagnosis. It will address:

  • why some people get the condition
  • the typical effects on a person’s health and ability to work
  • the factors which affect recovery.

It will also look at how best to ensure patients are able to access the right treatment and support through health services.

The researchers will use data from more than 60,000 people drawn from a combination of:

  • national anonymised primary care electronic health records
  • longitudinal studies of people of all ages across the country.

From these studies, people reporting ‘Long-COVID’ and comparator groups will be asked to wear a wrist band measuring:

  • exercise ability
  • breathing
  • heart rate.

Participants will also complete online questionnaires on mental health and cognitive function.

They will also be invited to a clinic for non-invasive imaging to look at potential damage to vital organs, such as the brain, lungs and heart.

Findings will be shared with:

  • bodies involved in clinical guidelines (NICE, as collaborators in this project)
  • the government (via the Chief Scientific Advisor)
  • the public via social media and other outputs
  • the scientific community via research publications.

Non-hospitalised children and young people with long COVID (The CLoCk Study)

  • Project lead: Professor Sir Terence Stephenson, UCL Great Ormond Street Institute of Child Health
  • Funding: £1.4 million over three years

This research project aims to characterise symptoms typical of ‘Long-COVID’ in non-hospitalised children and young people. It will also assess risk factors, prevalence and how long it lasts. This research will establish a medical diagnosis and operational definition of the condition, and look at how it might be treated.

The researchers aim to enrol 6,000 children and young people in the study, in two equal size cohorts – consisting of:

  • 3,000 who have had a positive COVID-19 test
  • 3,000 who have not.

Participants will be asked whether they still have physical or mental problems at three, six, 12 and 24 months afterwards infection. Comparisons will then be made between the two cohorts. Carers and children and young people taking part will be involved in co-production of this study and encouraged to complete surveys.

Results will be published, used to inform NHS services and health policy – and made available to participants. The study will provide data to help doctors to:

  • diagnose ‘Long-COVID’
  • establish how common it is
  • risk factors
  • how long it goes on for.

Top image:  Credit: Moyo Studio/GettyImages

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