‘Long COVID’ – a version of COVID-19 that results in continued illness of a significant number of people for many months after the initial disease has waned – was neglected, with the focus on life-saving treatments and vaccine development, writes MedicalBrief. But at last more attention is being paid. It now has a name – ‘post-COVID syndrome’ – and treatment is being advanced in the form of guidelines and, in the UK, special clinics.
Early in the pandemic, it was believed that COVID-19 lasted two to three weeks. It soon became clear that many people continued to experience symptoms months after falling ill, and that people could experience one or more of varied symptoms and conditions.
Last week The Guardian reported that many people suffering from ‘long COVID’ are still unable to work at full capacity six months after infection. A global survey of confirmed and suspected patients reported 205 symptoms across 10 organ systems after infection.
Around two-thirds of those surveyed reported symptoms for at least six months, after which the most likely symptoms to persist included fatigue, post-exertional malaise, ‘brain fog’, neurological sensations, headaches, memory problems, insomnia, muscle aches, palpitations, shortness of breath, and dizziness, speech and language problems. Memory and cognitive dysfunction were experienced by more than 85% of respondents.
Also in The Guardian, infectious diseases consultant Joanna Herman, who lectures at the London School of Hygiene & Tropical Medicine, describes her battle with long COVID and makes suggestions for the 40 new National Health Service (NHS) clinics being set up to help the large and growing number of people with the syndrome. A long excerpt of Herman’s article appears below.
On 18 December 2020 in the UK, NICE – the National Institute for Health and Care Excellence – the Royal College of General Practitioners and the Scottish Intercollegiate Guidelines Network published guidelines on the management of effects of long COVID-19.
Titled COVID-19 rapid guideline: managing the long-term effects of COVID-19, it includes identifying and assessing as well as managing COVID-19 long-term effects, and makes recommendations about care in all settings for people who have new or ongoing symptoms four weeks or more after the start of acute COVID-19.
Last week the South African Medical Journal reported: “The persistence of symptoms or development of new symptoms relating to SARS-CoV-2 infection late in the course of COVID-19 is an increasingly recognised problem facing the globally infected population and its health systems.”
Titled “Long-COVID: An evolving problem with an extensive impact”, the article is by scientists from the University of Cape Town, University of the Witwatersrand, the National Institute of Communicable Diseases, South African Medical Research Council and National Health Laboratory Service – Marc Mendelson, Jeremy Nel, Lucille Blumberg, Shabir Madhi, Murray Dryden, Wendy Stevens and Francois Venter.
They write that in long COVID: “Symptoms are as markedly heterogeneous as seen in acute COVID-19 and may be constant, fluctuate, or appear and be replaced by symptoms relating to other systems with varying frequency. Such multi-system involvement requires a holistic approach to management of long-COVID, and descriptions of cohorts from low- and middle-income countries are eagerly awaited.”
The scientists continue in the SAMJ: “Although many persons with long-COVID will be managed in primary care, others will require greater input from rehabilitation medicine experts. For both eventualities, planning is urgently required to ensure that the South African public health service is ready and able to respond.”
Last October, the National Institute for Health Research (NIHR) released a report titled Living with Covid-19, which is described as: “A dynamic review of the evidence around ongoing COVID-19 symptoms (often called long Covid)”. It suggests long COVID might be up to four syndromes that some patients might experience simultaneously.
In the United States, significant numbers of coronavirus patients experience long-term symptoms that send them back to the hospital, taxing an already overburdened health system, writes Pam Belluck for The New York Times. Early studies suggest that tens or possibly hundreds of thousands of people could return to the hospital.
One study of more than 100,000 COVID-19 patients initially hospitalised between March and July 2020 found that one in 11 were readmitted within two months of discharge. Another study early in the pandemic found that nearly a fifth were rehospitalised within 60 days, and yet more research in Michigan put the figure at 15%.
The following section highlight parts of the articles and information described above. Links to the full reports are at the bottom.
Many ‘long COVID’ sufferers unable to fully work six months later
Many people suffering from ‘long COVID’ are still unable to work at full capacity six months after infection, a large-scale survey of confirmed and suspected patients has found, reported Natalie Grover and Ian Sample for The Guardian on 5 January 2021. Respondents to global survey reported 205 symptoms across 10 organ systems after infection.
COVID-19 long haulers – with symptoms affecting organs ranging from the heart to the brain – have no real explanation and no standardised treatment plan for their long-term condition.
In one of the largest studies yet, Patient Led Research for COVID-19 – a group of long COVID patients who are also researchers – surveyed 3,762 people aged 18 to 80-plus from 56 countries who responded in nine languages to 257 different questions.
The survey recorded 205 symptoms across 10 organ systems, with 66 symptoms traced over seven months. On average, respondents experienced symptoms from nine organ systems.
The analysis was limited to respondents with illnesses lasting longer than 28 days, whose onset of symptoms occurred before June 2020, allowing examination of symptoms over an average six months’ duration. Roughly 65% of respondents (2,454) reported experiencing symptoms for at least six months.
The most likely symptoms to persist after six months included fatigue, post-exertional malaise, cognitive dysfunction (‘brain fog’), neurological sensations, headaches, memory problems, insomnia, muscle aches, palpitations, shortness of breath, dizziness/balance issues, and speech and language problems.
Nearly 86% of respondents experienced relapses, most commonly triggered by physical activity, stress, exercise and mental activity.
Other less common symptoms – such as new allergies, facial paralyses, seizures, impaired vision or hearing – were important targets for further investigation, said Danny Altmann, a professor of immunology at Imperial College London.
Memory and cognitive dysfunction, experienced by more than 85% of respondents, were the most pervasive and persistent neurological symptoms. They were equally common across all ages and had a substantial impact on respondents’ ability to work, the authors found.
But the findings must be interpreted with caution. The majority of respondents were English speaking, white and of higher socio-economic status. Most participants reported having at least one pre-existing condition such as allergies, migraine and asthma. Fewer than a third of respondents in the survey also had a confirmed COVID-19 infection.
The enduring neurological problems that hospitalised COVID patients can experience have prompted calls for doctors to monitor patients for months after they are discharged.
Neurologists at the University of Brescia in Italy found that a third of 165 former COVID patients recalled for neurological assessment had problems six months after leaving hospital. Their symptoms varied widely from memory and attention issues to sleep disorders, fatigue, tremors and a loss of the sense of smell.
I’m a consultant in infectious diseases. ‘Long COVID’ is anything but a mild illness
Nine months on from the virus, I am seriously debilitated, writes Joanna Herman, who is a consultant in infectious diseases in London and teaches at the London School of Hygiene & Tropical Medicine, in a 27 December 2020 article in The Guardian. This is how the new National Health Service clinics need to help.
With the excitement of the COVID vaccine’s arrival, it may be easy to forget and ignore those of us with ‘long COVID’, who are struggling to reclaim our previous, pre-viral lives and continue to live with debilitating symptoms.
Even when the NHS has managed the herculean task of vaccinating the nation, COVID-19 and the new mutant variants of the virus will continue to circulate, leaving more people at risk of long COVID.
Data from a King’s College London study in September suggested that as many as 60,000 people in the United Kingdom could be affected, but the latest statistics from the Office for National Statistics suggest it could be much higher.
Herman continues: I was acutely ill in March, though – like many people with long COVID – mine was defined as a ‘mild’ case not requiring admission to hospital. Nine months on, I am seriously debilitated, with crashing post-exertional fatigue, often associated with chest pains.
On bad days, my brain feels like it doesn’t want to function, even a conversation can be too much. I have no risk factors, I’m in my 50s, and have always been fit, but remain too unwell to work – ironically as a consultant in infectious diseases.
My acute symptoms were over within 12 days, and I presumed I’d be back at work the following week. How wrong I was. In the following weeks I developed dramatic hair loss (similar to that post pregnancy) and continued to feel fatigued, usually falling asleep in the afternoon.
I tried to steadily increase the amount I was exercising – but suddenly in mid-June I started to experience severe post-exertional fatigue. It could happen on a short walk or it could be while cooking dinner. It was completely unpredictable. When I felt really terrible, I would get chest pains, which I’d not had during my initial illness, and my body seems to need intense rest – and a lot of it.
Graded exercise, an approach that has been used to manage patients with other post-viral fatigue, wasn’t working; in fact it seemed to be detrimental and could leave me floored for days. The one thing I realised early on was that pacing was vital.
For months it seemed there was no recognition of what was happening to so many of us, with numerous anecdotal reports of people being dismissed as anxious, depressed or histrionic.
It felt as if we had been left in limbo, not followed up because we weren’t ill enough initially to be treated in hospital, but most without appropriate medical care and support for the duration of their illness.
I am fortunate to have an excellent GP who has been extremely supportive throughout, but I could hear her frustration at the lack of anything concrete to offer or refer me to.
Much remains unknown
With its myriad symptoms and presentations, COVID represents a major challenge to the compartmentalised specialist services that hospitals have become. But one thing has been evident for some time: this is not a straightforward post-viral syndrome, and requires a different approach.
The announcement in October of £10m funding for clinics offering help for long COVID couldn’t have come soon enough. And then the National Institute for Health and Care Excellence upgraded guidance on ‘post-COVID syndrome’ – as long COVID will now be known – including a definition, as well as plans for the 40 clinics across England.
These clinics will bring physicians and therapists together to “provide joined-up care for physical and mental health”, and will include physical, cognitive and psychological assessment.
There will also be allocated funding for much-needed investigations into the mechanisms behind the long COVID symptoms. It is vital that long COVID is quantified and monitored in the same way we have been doing for hospital admissions and deaths.
Additionally, there must be easy access to social services for people who need a care package because they can’t feed or wash themselves, as well as financial support and employment advice.
Crucially, like many multi-disciplinary teams for chronic conditions, there should be a single point of contact with a nurse specialist who coordinates different team members, and helps direct access to other services. A comprehensive one-stop shop is vital for people who can’t manage multiple visits to different specialists.
It may be enough for some that they are simply listened to, and it is understood that they are not fabricating their symptoms. We also need to cease classifying all cases that were not admitted to hospital as “mild”. Those experiencing long COVID have anything but a mild disease.
COVID-19 rapid guideline: Managing the long-term effects of COVID-19
The guideline was developed jointly by NICE – the National Institute for Health and Care Excellence – the Royal College of General Practitioners and the Scottish Intercollegiate Guidelines Network . Below is the guidance summary. The recommendations are bulleted and each clicks through to detailed information.
NICE guideline, published on 18 December 2020
This guideline covers identifying, assessing and managing the long-term effects of COVID-19, often described as ‘long COVID’. It makes recommendations about care in all healthcare settings for adults, children and young people who have new or ongoing symptoms four weeks or more after the start of acute COVID-19. It also includes advice on organising services for long COVID.
This guideline has been developed jointly by NICE, the Scottish Intercollegiate Guidelines Network (SIGN) and the Royal College of General Practitioners (RCGP).
To develop the recommendations, we have used the following clinical definitions for the initial illness and long COVID at different times:
- Acute COVID-19: signs and symptoms of COVID-19 for up to four weeks.
- Ongoing symptomatic COVID-19: signs and symptoms of COVID-19 from four to 12 weeks.
- Post-COVID-19 syndrome: signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.
When using this guideline, follow the usual professional guidelines, standards and laws (including those on equalities, safeguarding, communication and mental capacity), as described in [a section on] making decisions using NICE guidelines.
The guideline includes recommendations on:
- Identifying people with ongoing symptomatic COVID-19 or post-COVID-19 syndrome.
- Assessing people with new or ongoing symptoms after acute COVID-19.
- Investigations and referral.
- Planning care.
- Follow-up and monitoring.
- Sharing information and continuity of care.
Who is it for?
- Health and care practitioners
- Health and care staff involved in planning and delivering services
Guideline development process
We are using a ‘living’ approach for the guideline, which means that targeted areas will be continuously reviewed and updated in response to emerging evidence.
We developed this guideline using the interim process and methods for guidelines developed in response to health and social care emergencies.
Living with Covid19
A dynamic review of the evidence around ongoing Covid19 symptoms (often called Long Covid)
National Institute for Health Research, published on 15 October 2020
The novel coronavirus (COVID-19) pandemic declared by the World Health Organisation in March 2020 has had far-reaching effects upon people’s lives, health care systems and wider society. As yet there is little research into the number of people at risk of developing ongoing COVID-19. Early attention has been on the acute illness generated by the virus, but it is becoming clear that, for some people, COVID-19 infection is a long term illness.
This rapid and dynamic review draws on the lived experience of patients and expert consensus as well as published evidence to better understand the impact of ongoing effects of COVID-19, how health and social care services should respond, and what future research questions might be. Our steering group concluded:
- There is a widespread perception that people either die, get admitted to hospital or recover after two weeks. It is increasingly clear that for some people there is a distinct pathway of ongoing effects. There is an urgent need to better understand the symptom journey and the clinical risks that underlie that. People, their families and healthcare professionals need realistic expectations about what to expect.
- A major obstacle is the lack of consensus on diagnostic criteria for ongoing COVID-19. A working diagnosis that is recognised by healthcare services, employers and government agencies would facilitate access to much needed support and provide the basis for planning appropriate services. Whilst it is too early to give a precise definition, guidance on reaching a working diagnosis and a code for clinical datasets is needed.
- The fluctuating and multisystem symptoms need to be acknowledged. A common theme is that symptoms arise in one physiological system then abate only for symptoms to arise in a different system.
- There are significant psychological and social impacts that will have long-term consequences for individuals and for society if not well managed.
- The multisystem nature of ongoing COVID-19 means that it needs to be considered holistically (both in service provision and in research). The varying degrees of dependency mean support in the community should be considered alongside hospital one-stop clinics. Social support needs to be understood together with the financial pressures on previously economically active people.
- COVID-19 has a disproportionate effect on certain parts of the population, including care home residents. Black and Asian communities have seen high death rates and there are concerns about other minority groups and the socially disadvantaged. These people are already seldom heard in research as well as travellers, the homeless, those in prisons, people with mental health problems or learning difficulties; each having particular and distinct needs in relation to ongoing Covid19 that need to be understood.
He was hospitalised for COVID-19. Then hospitalised again. And again.
Significant numbers of coronavirus patients experience long-term symptoms that send them back to the hospital, taxing an already overburdened health system, writes Pam Belluck for The New York Times, in an article published on 30 December 2020.
The following are excerpts from the story, which also describes the symptoms, experiences and treatments of some long COVID patients. According to the article:
Nearly a year into the pandemic, it’s clear that recovering from COVID-19’s initial onslaught can be an arduous, uneven journey. Now, studies reveal that a significant subset of patients are having to return to hospitals, sometimes repeatedly, with complications triggered by the disease or by the body’s efforts to defeat the virus.
Even as vaccines give hope for stopping the spread of the virus, the surge of new cases portends repeated hospitalisations for more patients, taxing medical resources and turning some people’s path to recovery into a Sisyphean odyssey that upends their lives.
Data on rehospitalisations of coronavirus patients are incomplete, but early studies suggest that in the United Statesalone, tens of thousands or even hundreds of thousands could ultimately return to the hospital.
A study by the Centers for Disease Control and Prevention of 106,543 coronavirus patients initially hospitalised between March and July found that one in 11 was readmitted within two months of being discharged, with 1.6% of patients readmitted more than once.
In another study of 1,775 coronavirus patients discharged from 132 VA hospitals in the pandemic’s early months, nearly a fifth were rehospitalised within 60 days. More than 22% needed intensive care, and 7% required ventilators. A report on 1,250 patients discharged from 38 Michigan hospitals from mid-March to July revealed that 15% were rehospitalised within 60 days.
Recurring admissions do not just involve patients who were severely ill the first time around.
“Even if they had a very mild course, at least one-third have significant symptomology two to three months out,” said Dr Eleftherios Mylonakis, chief of infectious diseases at Brown University’s Warren Alpert Medical School and Lifespan hospitals, who co-wrote another report. “There is a wave of readmissions that is building.”
Many who are rehospitalised were vulnerable to serious symptoms because they were over 65 or had chronic conditions. But some younger and previously healthy people have returned to hospitals, too. Readmissions strain hospital resources, and returning patients may be exposed to new infections or develop muscle atrophy from being bedridden.
Many rehospitalised patients have respiratory problems, but some have blood clots, heart trouble, sepsis, gastrointestinal symptoms or other issues, doctors report. Some have neurological symptoms like brain fog, “a clear cognitive issue that is evident when they get readmitted”, said Dr Vineet Chopra, chief of hospital medicine at the University of Michigan, who co-wrote the Michigan study. “It is there, and it is real.”
The Guardian article – Many ‘long COVID’ sufferers unable to fully work six months later (free access)
The Guardian article – I’m a consultant in infectious diseases. ‘Long COVID’ is anything but a mild illness (free access)
COVID-19 rapid guideline: Managing the long-term effects of COVID-19 (free access)
South African Medical Journal article – Long-COVID: An evolving problem with an extensive impact
National Institute for Health Research report – Living with COVID-19 (free access)
The New York Times article – He was hospitalised for COVID-19. Then hospitalised again. And again (free access to limited number of articles per month)
See also from the MedicalBrief Archives:
Long COVID may cause multiple organ damage even in low risk patients – Coverscan Study
Long Covid: Reviewing the science assessing the risk – Tony Blair Institute for Global Change Report
Answer to long COVID may lie in Chronic Fatigue Syndrome
COVID Symptom Study app: Attributes and predictors of long COVID
Finding the right GP – A qualitative study of people with long COVID