What is long COVID?
Long COVID means that you’ve had coronavirus (COVID-19) – whether you’ve managed it at home or been hospitalised – and you’re still experiencing ongoing symptoms.
Data suggests that one in 10 people have ongoing symptoms beyond three weeks. Emerging figures suggest that one in 20 people are ill beyond eight weeks and one in 50 are ill beyond 12 weeks.
Early on, many people thought that if you caught coronavirus, you’d have a ‘mild’ case, or at the other extreme, you would need to go to hospital. But we now know that isn’t the whole picture.
What does long COVID mean?
The term ‘long COVID’ has been used a lot on social media. But many experts are keen to call it ‘ongoing COVID’ or ‘living with COVID-19’. This is because we’re still finding out about it and it’s not clear if all people are affected by the same thing. Experts think people may be experiencing several different syndromes. Therefore, it’s important to be cautious about giving it a singular or ‘catch-all’ term.
What are the symptoms of ongoing COVID?
Experts think that the symptoms of ongoing COVID may fall into several ‘conditions’ or syndromes, including:
- post-intensive care syndrome
- post-viral fatigue syndrome
- long-term COVID syndrome
- permanent organ damage
Some of the main reported symptoms of ongoing COVID include:
- fatigue (extreme tiredness)
- brain fog (difficulty concentrating and struggling to think clearly)
- sore throat
- lost sense of taste and/or smell
- chest pain
- lung problems
- gut problems
- joint pain
- palpitations (fast heartbeat)
- kidney problems
- skin rashes
- mental health conditions, including anxiety and depression
You may have a combination of these symptoms, varying in severity, that ease and then flare up. You may have a run of good days followed by feeling poorly again. As yet, there’s no formal way to diagnose someone with ongoing COVID.
Who is most at risk?
Much more research needs to be done, but early data from King’s College London suggests ongoing COVID may be more likely to affect:
- older people
- people who have a greater number of different symptoms during the first week of being ill
What can help people with ongoing COVID?
In a recent review, experts outlined some potential ways for helping people who are living with ongoing COVID.
Guidance for doctors has been published in the BMJ (British Medical Journal) to advise them on how to manage people with ongoing COVID. It emphasises that diagnosis could be made without specific tests and that the wide range of symptoms should be considered when advising treatments.
Learning from the past
We can learn a lot from previous similar coronavirus outbreaks, such as MERS and SARS. For example, how to deal with the mental health impact of a pandemic by looking back at the long-term effect of these previous outbreaks.
Change to healthcare
COVID is described as a multisystem disease – this means that the way healthcare services are organised and delivered may need to adapt. It will be important that ongoing COVID is recognised as such and that services are more integrated (joined up) so that people can get the support they need.
For example, ‘one-stop’ long-term COVID clinics are going to be set up across England to give ‘joined up’ care. These will manage both physical and mental symptoms of ongoing COVID.
Using digital technology
One of the symptoms of ongoing COVID is extreme tiredness, therefore accessing medical help digitally could help those who are physically unable to visit clinics.
What should you do if you have ongoing COVID?
Seek medical advice
While there’s no clear way to diagnosis or treat ongoing COVID at the moment, it’s worth contacting your doctor if you think you’re experiencing it. They can give you advice and support on what to do.
Many people who are living with ongoing COVID have said that it’s hard to accept that recovery may be slow and ongoing. However, they did say that having realistic goals and pacing themselves has helped them to progress. Try to lower your expectations of fast recovery and take it one day at a time.
Tell your loved ones
Talk to your friends and family about how you are. Let them know that you may need their support and that some days may be harder than others. You may find that telling people helps you feel better and understood.
Cope with unpredictability
One of the hardest aspects of ongoing COVID is that recovery isn’t in a straight line. It can be unpredictable. This can be tough if you’ve been feeling well and then have symptoms again. To cope, it can help to put some strategies in place to help you manage.
Access practical help
Access reputable websites that offer support specifically for ongoing COVID. We have compiled a list for you below.
- Your COVID recovery from NHS England.
This site offers you lots of advice and support about recovering. It covers advice about how to manage ongoing effects, support for friends and family, managing daily tasks and returning to work. There’s also an option to access a new personalised digital programme that’s designed to support recovery. A healthcare professional will need to refer you – you’ll need to ask your doctor or hospital if there’s a centre in your area.
- How to manage post-viral fatigue after COVID-19 from The Royal College of Occupational Therapists.
This site gives you advice about dealing with the fatigue you feel after having a virus. It sets the advice out in ‘steps’ so you can follow them according to how you’re feeling. They also have a good resource on ‘conserving energy’.
- Managing post-viral fatigue after coronavirus from the ME Association.
This leaflet explains what post-viral fatigue is and what post-viral fatigue syndrome is. It offers advice for managing it.
- Post-COVID HUB by Asthma UK and British Lung Foundation.
This hub of information is specifically for those who have been left with breathing difficulties from coronavirus. It offers lots of practical advice, including techniques for breath control.
- Covid-19: the Road to Recovery from The Chartered Society of Physiotherapy.
This page offers videos, tips and advice on what to expect when recovering, including strength exercises and an activity planner.
While there’s a lot for the medical community to learn about ongoing COVID, it’s good that it’s now firmly on the healthcare agenda. And though it will take time, there will be better ways to help people who are affected.