Early in the pandemic, we thought that COVID-19 was a mild illness lasting less than two weeks for most people, with a small proportion of people falling seriously ill or dying from the disease.
But as the pandemic progressed, we started to hear reports about people who suffered from symptoms for weeks or months after their initial infection.
Thanks to health reports logged by millions of contributors to the ZOE COVID Study app, we’ve shown that up to one in 20 people reported COVID-19 symptoms for 8 weeks or more.
How to take part in our long COVID survey
We’re running our first ever survey collecting information on long COVID and how symptoms evolve and change over time.
The survey is open to everyone but we especially want to hear from those of you who might have had COVID for any length of time, whether diagnosed or not. It’s important that as many of you as possible take part, even if you no longer have symptoms.
From this one-off survey, we hope to learn more about the distribution and duration of COVID symptoms, including those associated with long COVID, and how they change over time.
If you’re already a ZOE COVID Study app contributor, you’ll be prompted to take part in the survey on the app once you've logged your daily report. You can also complete the survey for any secondary profiles, such as children or relatives.
If you’re not already contributing through the app but would like to get involved, download and start using the ZOE COVID Study app today.
Thanks to millions of daily health reports from ZOE COVID Study app contributors, here’s what we know about long COVID so far.
What does long COVID feel like?
Although symptoms vary between people, the most commonly reported are severe tiredness (fatigue), shortness of breath, headaches, loss of smell or taste, and chest pain.
To find out more about long COVID, we analysed the data from over 4000 COVID symptom study users who had consistently logged their health and tested positive for COVID-19 with a PCR test.
ZOE data shows that long COVID sufferers generally fall into two groups. The first group experienced ongoing respiratory symptoms, including coughing and shortness of breath, combined with fatigue and headaches.
The second group had multi-system effects resulting in symptoms affecting the brain, gut, and heart including palpitations (racing or skipping heartbeat), pins and needles, and ‘brain fog’.
Who gets long COVID?
ZOE data shows that around one in twenty people (5%) had COVID-19 symptoms for more than eight weeks, and around 2% of people can experience symptoms for 12 weeks or more.
With millions of confirmed COVID-19 infections across the UK, this adds up to hundreds of thousands of people potentially affected with long COVID.
Long COVID affects people of all ages, although older people were more likely to develop the condition than younger people.
We also saw that women are slightly more likely to get long COVID than men, especially in younger age groups. Having asthma also increases the risk of developing long COVID.
Importantly, we saw that the more different symptoms people experience in the first week of their infection, the more likely they are to have persistent symptoms.
What causes long COVID?
Most research into COVID-19 focuses on people hospitalised with severe disease, with long COVID receiving relatively little attention from researchers.
As a result, we still don’t know precisely what causes the condition, though there are a few theories:
Where can I get support for long COVID?
Managing long COVID symptoms can be difficult, especially if they are affecting your daily life, activity and work. The NHS Your COVID Recovery website highlights the need to manage your energy levels and avoid overexerting yourself during your recovery from the virus.
If you are worried about ongoing symptoms four or more weeks after a COVID-19 infection, you should talk to your GP. It’s important to remember that long COVID symptoms overlap with many other conditions, so your GP may want to rule out underlying causes.
Your GP may refer you to one of the new NHS long COVID clinics, which are being set up across the country to help people who have been suffering from symptoms for longer than 12 weeks.
In February, the UK government announced additional funding into understanding the causes, symptoms and treatment of long COVID, while a study from the University of Birmingham is looking at targeted therapies for the condition. So hopefully there will be more information about how to prevent and treat long COVID coming soon.
To play your part in our research and help us understand more about the effects of long COVID, keep logging your health reports in the ZOE COVID Study app.
Stay safe and keep logging