Tag: Long COVID

New research into treatment and diagnosis of long COVID

15 new studies across the UK will expand research into long COVID to support thousands of vulnerable people, backed by nearly £20 million through the NIHR

  • 15 new studies across UK to expand research that will support thousands of vulnerable people
  • Nearly £20 million for research projects will help improve understanding of long COVID and identify effective treatments
  • Projects include the largest long COVID trial to date which will involve over 4,500 people

Thousands of people suffering with long COVID will benefit from new research programmes backed by £19.6 million to help better understand the condition, improve diagnosis and find new treatments.

An extensive programme of 15 new research studies, backed by government funding through the National Institute for Health Research (NIHR), will allow researchers across the UK to draw together their expertise from analysing long COVID among those suffering long-term effects and the health and care professionals supporting them.

The latest research shows that although many people make a full recovery following COVID-19, a significant proportion of people continue to experience chronic symptoms for months. These ground breaking studies aim to help those people affected return to their normal lives.

The projects will focus on:

  • Better understanding the condition and identifying it
  • Evaluating the effectiveness of different care services
  • Better integrating specialist, hospital and community services for those suffering with long COVID
  • Identifying effective treatments, such as drugs, rehabilitation and recovery to treat people suffering from chronic symptoms
  • Improving home monitoring and self-management of symptoms, including looking at the impact of diet, and
  • Identifying and understanding the effect of particular symptoms of long COVID, such as breathlessness, reduced ability to exercise and brain fog

Health and Social Care Secretary, Sajid Javid, said: “Long COVID can have serious and debilitating long term effects for thousands of people across the UK which can make daily life extremely challenging.

“This new research is absolutely essential to improve diagnosis and treatments and will be life-changing for those who are battling long-term symptoms of the virus.

“It will build on our existing support with over 80 long COVID assessment services open across England as part of a £100 million expansion of care for those suffering from the condition and over £50 million invested in research to better understand the lasting effects of this condition.”

Professor Nick Lemoine, Chair of NIHR’s long COVID funding committee and Medical Director of the NIHR Clinical Research Network (CRN), said: “This package of research will provide much needed hope to people with long-term health problems after COVID-19, accelerating development of new ways to diagnose and treat long COVID, as well as how to configure healthcare services to provide the absolute best care.

“Together with our earlier round of funding, NIHR has invested millions into research covering the full gamut of causes, mechanisms, diagnosis, treatment and rehabilitation of long COVID.”

The selection process for this broad range of innovative studies into long COVID involved people with lived experience at every stage and their input has been invaluable in shaping the outcome of this call and the research projects which will receive funding.

The projects include:

  • STIMULATE-ICP at University College London which will be the largest long COVID trial to date, recruiting more than 4,500 people with the condition. With £6.8 million of funding, the project will test the effectiveness of existing drugs to treat long COVID by measuring the effects of 3 months’ treatment, including on people’s symptoms, mental health and outcomes such as returning to work. It will also assess the use of MRI scans to help diagnose potential organ damage, as well as enhanced rehabilitation through an app to track their symptoms.
  • The immunologic and virologic determinants of long COVID at Cardiff University with nearly £800,000, which will look at the role of the immune system in long-term disease and whether overactive or impaired immune responses could drive long COVID by causing widespread inflammation.
  • ReDIRECT at University of Glasgow backed by nearly £1 million, which will assess whether a weight management programme can reduce symptoms of long COVID in people who are overweight or obese.
  • LOCOMOTION at University of Leeds with £3.4 million, which focuses on identifying and promoting the most effective care, from accurate assessments in long COVID clinics to the best advice and treatment in surgeries, as well as home monitoring methods that can show flare-ups of symptoms. The research aims to establish a gold standard of care that can be shared across England and the rest of the UK.
  • EXPLAIN at University of Oxford backed by £1.8 million, which will seek to diagnose ongoing breathlessness in people with COVID-19 who were not admitted to hospital, using MRI scans to trace inhaled gas moving into and out of the lungs to assess their severity and whether they improve over time.

UK Government Minister for Scotland Iain Stewart said: “Long Covid is a terrible illness affecting thousands of people across the UK, and as it’s such a new disease, there’s still a lot we don’t know about it.

“This UK Government funding, which is supporting studies led by the University of Glasgow and University of the West of Scotland, will help us make progress in understanding long Covid and hopefully improve treatment and support for patients right across the UK.”

Professor Amitava Banerjee, Associate Professor in Clinical Data Science and Honorary Consultant Cardiologist, University College London, Chief investigator of the STIMULATE-ICP (Symptoms, trajectory, inequalities and management: understanding long COVID to address and transform existing integrated care pathways) trial, said: “Individuals with long COVID have long been asking for recognition, research and rehabilitation.

“In our two-year study across six clinical sites around England, we will be working with patients, health professionals, scientists across different disciplines, as well as industry partners, to test and evaluate a new ‘integrated care’ pathway from diagnosis to rehabilitation, and potential drug treatments in the largest trial to-date.

“We will also be trying to improve inequalities in access to care and investigating how long COVID compares with other long-term conditions in terms of use of healthcare and burden of disease, which will help to plan services.”

Dr Dennis Chan, Principal Research Fellow, Institute of Cognitive Neuroscience, University College London, Chief investigator of the CICERO (Cognitive Impairment in long COVID: PhEnotyping and RehabilitatiOn) project, said: “Cognitive impairment, referred to informally as ‘brain fog’, is a major component of long COVID that compromises people’s daily activities and ability to return to work.

“The aim of this study is twofold; first, to understand better the nature of this ‘cognitive COVID’ in terms of the cognitive functions affected and the associated brain imaging changes, and second, to test whether neuropsychological rehabilitation can improve people’s outcomes.

“If this study is successful we will not only understand much better the way in which COVID affects the brain but also provide NHS services with new tools to help people recover from their cognitive difficulties.

Professor Fergus Gleeson, Professor of Radiology and Consultant Radiologist, Oxford University, Chief Investigator of EXPLAIN (HypErpolarised Xenon Magnetic Resonance PuLmonary Imaging in PAtIeNts with Long-COVID) project, said: “Following on from our earlier work using hyperpolarised xenon MRI in patients following hospitalisation with COVID-19 pneumonia, where we showed that their lungs may be damaged even when all other tests were normal, it is critical to determine how many patients with long COVID and breathlessness have damaged lungs, and if and how long it takes for their lungs to recover.

“Hyperpolarised xenon MRI is a safe scanning test that requires the patient to lie in the MRI scanner and breathe in one litre of the inert gas xenon that has been hyperpolarised so that we can see it using MRI.

“The scan takes a few minutes and does not require radiation exposure, so it may be repeated over time to see lung changes. Using this technique, we can see the xenon – which behaves in a very similar way to oxygen – move from the lungs into the blood stream.

“In this way, we can see if there has been damage to the airways in the lungs, or to the areas where oxygen crosses into the blood stream, which appears to be the area damaged by COVID-19.”

Background information

  • The projects were funded following a UK-wide research call for ambitious and comprehensive research into understanding and addressing the longer term physical and mental health effects of COVID-19 in non-hospitalised people and will build on the existing research already commissioned to look at long COVID.
  • In February 2021, 4 projects funded by NIHR and UK Research and Innovation (UKRI) were announced, following the first research call.
  • The UK began the commissioning of long COVID research in 2020 and some projects are already producing results that are informing the understanding of long COVID. This research call adds to the existing investment of over £30 million of research funding taking the total investment to £50 million.
  • The National Institute for Clinical Excellence (NICE) has issued official guidance on best practice for recognising, investigating and rehabilitating patients with long COVID. According to NICE guidance, ‘long COVID describes signs and symptoms that continue or develop after acute COVID-19. It includes both ongoing symptomatic COVID-19 (from 4 to 12 weeks) and post-COVID-19 syndrome (12 weeks or more).’
  • In October 2020, NHS England and Improvement launched a 5 point plan for long COVID. There are now 89 specialist post COVID-19 clinics operating in England.
  • On 15 June 2021, NHSEI published a new 10 point plan and announced an additional £100 million expansion of care for patients with long COVID.

Study summaries

Developing and testing the best ways to diagnose, treat and provide rehabilitation for people with long COVID

Dr Amitava Bannerjee, University College of London – £6.8m

The wide-ranging symptoms of long COVID are debilitating and need coordinated care from specialists, hospitals and community services. The STIMULATE-ICP (Symptoms, trajectory, inequalities and management: understanding long COVID to address and transform existing integrated care pathways) trial, developed with the help of patient organisations, will be the largest long COVID trial to date, recruiting more than 4,500 people with the condition. This project will test the efficacy of existing drugs to treat long COVID, and measure the different effects of three months’ treatment on patients with regards to their symptoms, mental health and outcomes such as returning to work. It will also assess the use of MRI scans to help diagnose potential organ damage in those recovering from the coronavirus, as well as enhanced rehabilitation – the provision of joined-up specialist care centred around an app for patients allowing them to track their symptoms.

Optimising standards of care for long COVID in hospitals, doctors’ surgeries and at home

Dr Manoj Sivan, University of Leeds – £3.4m

Although there are 83 long COVID clinics in England, most people have not had access to them, and face long waiting times to be seen. The LOCOMOTION (long COVID multidisciplinary consortium: optimising treatments and services across the NHS) project focuses on identifying and promoting the most effective care, ranging from accurate assessments in these clinics to the best advice and treatment in surgeries, as well as home monitoring methods that can show flare-ups of symptoms. Drawing from the experiences of current long COVID patients and NHS professionals, the research aims to establish a ‘gold standard’ of care that can be shared across England and the rest of the UK. Analysis will be conducted in 10 long COVID clinics, at home and in doctors’ surgeries, and the study will track referrals and evaluate different services through patient interviews to make sure they are efficient, accessible and cost-effective. Specialists in healthcare inequality will also ensure that views are sought and recorded from people who are not visiting clinics.

Explaining why long COVID patients experience breathlessness and a reduced ability to exercise

Professor Fergus Gleeson, University of Oxford – £1.8m

One of the most prevalent and persistent symptoms among long COVID patients has been discomfort in breathing following physical activity. The EXPLAIN (Hyperpolarised xenon magnetic resonance pulmonary imaging in patients with Long-COVID) project will seek to diagnose ongoing breathlessness in coronavirus patients who were not admitted to hospital, using MRI scans to trace inhaled gas moving into and out of the lungs.

A 15-minute scan using low levels of xenon gas will display lung function and – if abnormalities are found – comparisons of data across different groups of participants recruited from Oxford and Sheffield can help assess their severity and whether they improve over time. Some EXPLAIN patients will also have a separate scan to see if heart damage can be identified. If the MRI scans separate patients with and without lung disease, further CT scans can be analysed, using artificial intelligence and blood samples to identify associated conditions and inform the development of treatments.

Understanding and treating ‘brain fog’

Dr Dennis Chan, University College London – £1.2m

Up to three quarters of people who experience long-term symptoms after COVID-19 report problems with memory, attention or other cognitive functions – symptoms known collectively as ‘brain fog’. The CICERO (Cognitive Impairment in long COVID: PhEnotyping and RehabilitatiOn) project will first determine which elements of brain function are most affected in people with long COVID. The relationship between brain function and other symptoms of long COVID, such as fatigue and anxiety, will be explored, and MRI scanning will be used to identify the affected brain networks. The researchers will then develop and test a new rehabilitation strategy to help people recover from the cognitive aspects of long COVID and return to normal life and working ability. This will support production of a freely available COVID-19 Cognitive Recovery Guide on how best to offer the new rehabilitation approach depending on the patient’s symptoms.

Co-designing personalised self-management for patients at home

Professor Fiona Jones, Kingston University – £1.1m

Long COVID describes more than 200 different symptoms that can interact and fluctuate. Although fatigue and problems with brain function are the most common symptoms, each patient can experience a different set of symptoms. The LISTEN (Long COVID Personalised Self-managemenT support – co-design and EvaluatioN) project will work in partnership with people who have long COVID to design and evaluate a package of self-management support that can be personalised to individual needs. The researchers will first work with people living with or recovered from long COVID, plus a social enterprise with expertise in reaching seldom heard populations, to design the package and associated patient and training resources. The team will then test the self-management package alongside up to six one-to-one virtual coaching sessions from trained rehabilitation practitioners, to test whether the treatment improves how people with long COVID feel and how they cope with everyday activities. The researchers will also evaluate how the package could be implemented more widely, with the aim that self-management for people with long COVID can be delivered at scale.

ReDIRECT: Remote Diet Intervention to Reduce long Covid symptoms Trial

Dr David Blane, University of Glasgow – £999,679

The immunologic and virologic determinants of long COVID

Professor David Price, Cardiff University – £774,457

Quality-of-life in patients with long COVID: harnessing the scale of big data to quantify the health and economic costs

Dr Rosalind Eggo, London School of Hygiene and Tropical Medicine – £674,679

Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue (PAuSing-Post-COVID Fatigue)

Dr Mark Baker, Newcastle University – £640,180

Immune analysis of long COVID to inform rational choices in diagnostic testing and therapeutics

Professor Daniel Altmann, Imperial College – £573,769

Understanding and using family experiences of managing long COVID to support self care and timely access to services

Professor Sue Ziebland, University of Oxford – £557,674

Development of a robust T cell assay to retrospectively diagnose SARS-CoV-2 infection and IFN-γ release assay as diagnostic and monitoring assay in Long COVID patients

Dr Mark Wills, University of Cambridge – £372,864

Using Activity Tracking and Just-In-Time Messaging to Improve Adaptive Pacing: A Pragmatic Randomised Control Trial

Professor Nicholas Sculthorpe, University of the West of Scotland – £317,416

Impact of COVID-19 vaccination on preventing long COVID: a population-based cohort study using linked NHS data

Professor Daniel Prieto-Alhambra, University of Oxford – £224,344

Long COVID Core Outcome Set (LC-COS) project

Dr Tim Nicholson, King’s College London – £139,619

TUC calls for long Covid to be recognised as a disability to prevent “massive” discrimination

The TUC has called for long Covid to be urgently recognised as a disability and Covid-19 as an occupational disease, to give workers access to legal protections and compensation.

The call comes as the TUC publishes an in-depth report on workers’ experiences of long Covid during the pandemic.

More than 3,500 workers responded to a TUC survey on the impact of long Covid on people’s daily working lives.

The survey reveals that, of those surveyed:

  • Nearly 3 in 10 (29 per cent) have experienced symptoms lasting longer than a year.
  • More than 9 in 10 (95 per cent) have been left with ongoing symptoms.
  • A clear majority had experienced side effects including brain fog (72 per cent), shortness of breath (70 per cent), difficulty concentrating (62 per cent) and memory problems (54 per cent).
  • Over half (52 per cent) had experienced some form of discrimination or disadvantage due to their condition.

The report highlights how frontline workers have been disproportionately affected by long Covid.

Over three-quarters (79 per cent) of those who responded to the TUC’s survey identify themselves as key workers, with the majority working in either education or health and social care.

More than two-thirds (68 per cent) of respondents were women. 

Long Covid in the workplace

The report reveals the extent of discrimination in the workplace towards those with long Covid.

Over half (52 per cent) of respondents said they had experienced some form of discrimination or disadvantage due to their condition.

Workers told the TUC how they were faced with disbelief and suspicion when they disclosed their symptoms:

  • Around a fifth (19 per cent) said their employer had questioned the impact of their symptoms.
  • One in eight (13 per cent) faced questions from their employer about whether they had long Covid at all.
  • One in 20 respondents (5 per cent) said they had been forced out of their jobs altogether because they had long Covid. 

Respondents described the difficulties that they faced trying to work while experiencing a range of long Covid symptoms.

One person – who contracted Covid-19 at work – said that when their employer went ahead with an international event in the first wave of the pandemic: “I was still expected to work long hours, handle stressful situations in impossible timeframes, find and fill in forms (which I struggled to do because of cognitive issues), and spend hours on Zoom calls when I struggled to talk and breathe, resulting in extreme chest pain, shortness of breath, exhaustion and severe symptom relapses.”

Respondents were also concerned about what the future might hold for them at work given the amount of sick leave they had been forced to take due to their long Covid symptoms.

Around one in six respondents (18 per cent) said the amount of sick leave they had taken had triggered absence management or HR processes.

New rights and protections for those with long Covid

The TUC is calling for the government to urgently recognise long Covid as a disability under the Equality Act.

The Equality Act 2010 defines disability as a “physical or mental impairment…[that] has a substantial and long-term adverse effect on [their] ability to carry out normal day-to-day activities”. Government guidance makes clear that ‘long-term’ means 12 months or more.

The TUC says that many who have long Covid already meet this criteria and should therefore be protected under the law rather than forced to go through the stress of employment tribunals.

Extending Equality Act 2010 protections so they cover workers with long Covid would ensure employers cannot legally discriminate against them. It would also put a duty on employers to make reasonable adjustments that remove, reduce or prevent any disadvantages workers with long Covid face, as for any other enduring condition or disability.  

In addition, the union body is calling on ministers to recognise Covid-19 as an occupational disease – entitling employees and their dependents to protection and compensation if they contracted the virus while working.

TUC General Secretary Frances O’Grady said: “Many of the workers who have carried us through the pandemic are now living with debilitating symptoms of long Covid. And we’re beginning to hear troubling stories of a massive wave of discrimination against people with long Covid.  

“It’s time to recognise this condition properly – and make sure workers who are living with long Covid get the support they need to do their jobs.

“Long Covid must be recognised as a disability. That would mean workers are protected by the Equality Act, and would have a right to get reasonable adjustments at work.

“And Covid-19 should be designated as an occupational disease. That would allow workers who contracted Covid-19 at work and are living with the consequences to claim the compensation they are due.  

“Employers must also act. They should make sure they make reasonable adjustments for workers with long Covid, and complete specific risk assessments to make sure workers with long Covid are safe at work.” 

Lesley Macniven, Chair of the Long Covid Support Group, who worked with the TUC on its report, said: “Even those with ‘mild’ Covid can suffer daily with fluctuating symptoms, exhausted and alone. Promises we’ll ‘just get better’ have been proved otherwise.

“A year on we need legally enforceable guidance for employers and government – informed by unions, occupational health and patient groups with significant lived experience managing long Covid.

“Patients need time to convalesce, then recuperate through a very gradual, flexible phased return to work, over months, to achieve a sustainable return.

“Long Covid is disabling young, previously healthy workers. This key step is needed to take the effects of long Covid seriously, enable rehabilitation and protect dedicated workers from discrimination due to poor understanding of the condition.”

Formatted-version-of-Long-Covid-report-v1.3-1Download

New support for professionals on M.E./CFS and managing Long Covid symptoms

GPs and health professionals in Scotland can now get a free one-hour training session on the diagnosis and management of M.E./CFS. This module, based on ten case studies, also supports the management of Long Covid symptoms.

Action for M.E. is very excited to launch a new partnership project in Scotland: Learn about M.E. – the M.E./CFS Professional Development Project in Scotland.

This project is a partnership between Action for M.E., The M.E. Association, #MEAction Scotland, The 25% Group and Dr. Nina Muirhead. Dr Muirhead, who developed a free online Continuing Professional Development (CPD) module in partnership with the UK CFS/M.E. Research Collaborative (CMRC,) became ill with M.E./CFS in 2016.

Dr. Muirhead said: “Only after I developed M.E. myself did I realize that I had not understood the illness. Feeling the devastating impact of M.E. on myself and my life I felt determined to offer something that changed that experience for other people.”

Many people with M.E. face disbelief and stigma around their illness and do not receive the appropriate care and support they need. This project provides vital information to GPs and Health Professionals in Scotland to assist them to diagnose and manage the symptoms of M.E./CFS. This module is also likely to be applicable to a subset of COVID patients who may develop post viral M.E./CFS and could be harmed by inappropriate advice to exercise.

There are around 20,000 adults and children living with M.E. in Scotland.

Action for M.E.’s Big Survey 2019 found that over 35% of respondents who live with M.E. in Scotland were not at all confident that their GP understood their condition. In addition, only 7% of children and young people and 16% of adults are obtaining a diagnosis within the current NICE and Scottish Good Practice Statement on ME-CFS guideline timescale of three months and four months respectively. Almost one in five adults (18%) waited more than six years for a diagnosis.

This training module on M.E./CFS will improve knowledge of the illness; reduce delays to diagnosis, reduce the likelihood of multiple unnecessary referrals and investigations and the potential for harm for people with M.E.

General Practitioners, Medical students and Allied Health Professionals will receive 1 hour CPD upon successful completion of the course.

The Scottish Government’s Neurological Framework funding is supporting the project to improve knowledge relating to diagnosis and management of M.E./CFS. Dr. Nina Muirhead is developing a complementary podcast and short opinion pieces to support dissemination and take up in Scotland.

Employers urged to plan for effects of long COVID

Doctors are urging employers to plan for the effects of Long COVID now as cases continue to grow. Without planning how to manage the condition in advance, employers risk being left with big staffing problems.

“The Medical profession knows about post viral syndromes, but the potential scale and complexity of Long COVID is presenting new challenges” says Dr. Greg Irons MBChB MFOM, an occupational health specialist practising in London.

“The UK Government’s Office for National Statistics published data last November showing that around one in five people who tested positive for COVID-19 had symptoms that lasted for 5 weeks or longer – and one in ten people had symptoms that lasted for 12 weeks or longer” he said.

One large study recently published in The Lancet following 1,733 adults in Wuhan who were recovering from COVID found 76% of patients reported at least one post-viral symptom. More than 50% showed chest problems on scans. Other studies have shown many patients had lingering lung problems three-months after infection.

Considering that approaching 4 million people in the UK have tested positive so far (and the true number of infections is likely to be higher), employers are potentially looking at a significant number of Long COVID cases within the UK workforce.

Difficult to Prove

It is likely to be challenging for employers and doctors to navigate the complexities of Long COVID. Unless a PCR swab test was taken (and gave a positive result) at the time of infection, or specific (highly accurate) antibody testing was done in the weeks soon after, it is difficult to prove if an employee has had COVID-19 or not.

Importantly, a negative result from an antibody test does not mean an employee has not had COVID-19. Over time, antibody levels may have depleted and become undetectable. Consequently, it can be impossible to definitively confirm if an employee has had COVID-19 in the past.

Because the diagnosis is subjective and the symptoms are varied, Long COVID is reminiscent of other chronic conditions, which can also be challenging for employers to manage. Fibromyalgia, Chronic Fatigue Syndrome (ME) and some types of chronic back pain are just some examples.

There is no definitive guide for exactly how long it may take to fully recover from Long COVID. Recovery times can be different for every patient, although symptoms usually resolve within 12 weeks for most people. This will present difficulties for employers.

As far as is understood, the chances of developing Long COVID are not thought to be linked to the severity of the initial infection. Some patients report long-term problems, although were not hospitalised during the initial infection. New or ongoing symptoms can occur and can also change dramatically at any time.

Psychological & Physical Repercussions

Many patients are reporting psychological or cognitive concerns following infection, sometimes long after they have recovered.

Mike Battista, Staff Scientist at Cambridge Brain Sciences, the online platform for assessing cognitive function says: “With COVID-19, the severity of cognitive impairments can vary widely from person to person.

“Traditional methods of measuring those problems are usually a one-off binary decision: is someone severely impaired or not? Clinicians are much better served by a continuous measure of cognitive capacity to track subtle changes over time.”

However, assessing the physical elements of Long COVID can also be very difficult. Physiotherapy can certainly help, although rehabilitation is likely to require care and support from many different medical disciplines. That is not always a straightforward process.

Consequently, rehabilitation from Long COVID may involve a multi-disciplinary approach. That can take time and requires employee consent. Primary Care, Occupational Health, Respiratory Physiotherapy and other services are likely be involved. This may well require significant patience and co-ordination, especially if it is led by an employer.

“Just because an employee has a long-term medical condition, it does not mean an employer has no options” says Magnus Kauders, Managing Director of Occupational Health Assessment Ltd, a nationwide occupational health provider. “Rehabilitation can be time consuming and tricky, but it can be done” he said.

“As a last recourse, the capability channel will remain available for employers. However, that will usually require professional insight, at the very least support from occupational health and probably specialist legal support”, he continued.

Clinicians are already suggesting that the future support for Long COVID recovery will involve a much more nuanced approached than historical approaches to rehabilitation.

It will also involve cutting-edge tools providing doctors and employers with an objective evaluation of each patient’s progress at every stage of their rehabilitation.

Although these tools to support rehabilitation are there, it still may not be an easy path for employers. “It is likely to require physical, psychological, biological and social support, possibly for many years to come” says Dr. Irons.