Long Covid: what you need to know
By Dr Sharon Taylor and Professor Gavin Yamey
Most people know that the new coronavirus can cause a mild illness lasting a few days, similar to a cold, or it can become severe and lead to hospitalisation or even death. However, we’re becoming increasingly aware that there’s a third type of Covid-19, in which people get infected and don’t end up in hospital, but go on to have long-term symptoms.
What proportion of people with Covid-19 get this third type? The Covid Symptom Study, in which millions of people in the US, UK, and Sweden are using an app to self-monitor their symptoms, found that around 10% of people have symptoms lasting beyond one month.
What is long Covid and what are the symptoms?
Around 60,000 of those with Covid-19 in the UK have ended up with a long-term illness lasting over three months and many are still ill at six months. Their infection may affect many organs in the body including their heart, lungs, liver, kidneys, nervous system, skin, or intestinal tract. It’s a condition that’s been called long Covid or post-acute Covid-19.
Patients with long Covid created a video called ‘Message in a Bottle: Long Covid SOS’. It summarised their experiences of the illness, and has been viewed almost 43,000 times.
Long Covid can cause of whole host of different symptoms or clusters of symptoms, which can come and go. Some people will have a drawn-out illness and some will be left with serious consequences.
The most common symptoms are tiredness, shortness of breath, cough, chest tightness and pain (“lung burn”), headache, hoarse voice, muscle pain, and palpitations. Studies are coming out showing that it affects the brain heart, pancreas, skin, thyroid, gut, kidneys and musculoskeletal system. It can be so debilitating that caring for children, returning to work, or even gentle exercise are impossible.
It appears that it affects all ages, and women are twice as likely to develop it than men.
As we wrote in an 11th August column for TIME magazine, long Covid remains poorly understood. It isn’t even clear what’s causing the persistent symptoms. The virus may be causing organ damage directly, or it could be that the body’s immune system is triggered by the virus to go into over-drive, causing damaging inflammation.
A number of patients with long Covid have struggled to find support or even get a diagnosis for their wide-ranging symptoms. A number are seeking support from groups on social media. In the UK, there are two support groups on Facebook — the Positive Path of Wellness (Covid UK Long Haulers) and the Long Covid Support Group — and there is also the Body Politic COVID-19 Support Group on Slack.
What forgotten patients with long Covid need
People suffering with long Covid need three Rs: recognition, rehabilitation, and research.
If you have mild symptoms or symptoms that improve after a few weeks, we recommend seeking the support of your GP who can assess if more specialist input is needed. Professor Trish Greenhalgh has produced comprehensive guidelines for GPs on how best to manage long Covid.
But if your Covid-19 symptoms do not improve after three weeks, or they get worse with time, we believe further tests may be warranted. In this situation, your GP may refer you for specialist investigation and support.
There a few specialist rehabilitation clinics popping up around the country but a lot more are needed to help people with long Covid manage their symptoms and to promote their recovery.
Who would be responsible for making sure that such services are set up?
In the UK, this is the responsibility of health boards as well as Clinical Commissioning Groups—groups of GPs in each area that get together to commission services for their patients. The BBC contacted all 212 health boards and Clinical Commissioning Groups across the UK to see if they had set up post-Covid clinics for patients who were not hospitalised. Only 86 responded, of whom only 10 were running such facilities.
Doctors and patients are calling for “one stop clinics” involving multidisciplinary teams to help the rehabilitation of patients experiencing long Covid . Professor Lynn Turner-Stokes, working in rehabilitation medicine, has argued that each patient will need their own personalised rehabilitation prescription, tailored to their specific problems. It is crucial, she argues, to start with a proper evaluation of each patient’s heart and lung function before starting rehabilitation under expert supervision.
The NHS has also released an online Covid -19 recovery portal providing information for recovery. Doctors warn that a ‘one size fits all’ approach to treating long Covid could cause serious harm to patients if the underlying disease or organ damage goes undetected.
Recently, 39 doctors who themselves have long Covid published a letter in the BMJ, requesting access to services, research and surveillance, and the involvement of patients in the design of services. Patients themselves should help shape this research agenda.
Why now is a good time to cut back on – or cut out – alcohol
You may be tempted to drink alcohol to relax or distract yourself from the constant stream of Covid-19 news. Or maybe you have found yourself feeling isolated during lockdown, without access to your usual support systems or people. But alcohol can affect your health and it could even increase your risk of getting Covid-19. Alcohol has a negative effect on your immunity and could make you more vulnerable to both contracting the virus and the consequences of the virus. If you’re drunk, you may be less likely to stick with social distancing.
As the World Health Organization (the WHO) says, “there is no ‘safe limit’ – in fact, the risk of damage to your health increases with each drink of alcohol consumed.”
Now might be a good time to cut down or stop drinking to improve your overall health, including your immunity.
The WHO also points out that there are some myths floating around about alcohol and Covid-19. Don’t be tempted to believe these! Alcohol does NOT destroy the coronavirus. It does the opposite: it makes it more likely that you’ll become infected.
If you are suffering from long Covid, Professor Trish Greenhalgh’s guidelines on managing the condition do include some self-care tips that address alcohol use. These include doing what you can to improve your diet and sleep, quitting smoking, and limiting your caffeine and alcohol intake.
About the authors:
Dr Sharon Taylor is a physician, educator, trainer and Consultant Child and Adolescent Psychiatrist with Central and North West London NHS Foundation Trust, London and Honorary Senior Lecturer Imperial College School of Medicine, London, United Kingdom.
Professor Gavin Yamey is a physician and professor of global health and public policy at Duke University, where he directs the Center for Policy Impact in Global Health.
Dr Fiona Sim explains why resetting the dial to low risk drinking is important for recovery from the coronavirus.