Catching up to ‘Long COVID’ — Diagnostic and treatment information, at last
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.