What we’ve learnt about long COVID
We’ve learnt a lot more about the wide range of symptoms people experience. Breathlessness, fatigue, chest pain and headaches are just some of the symptoms people live with for four or more weeks after getting COVID-19. We also know that the more symptoms people have, the longer it takes them to recover.
One symptom in particular we’ve responded to is what’s known as ‘brain fog’. These are issues with memory and concentration that can affect a person’s attention span and ability to take in lots of information at once. This insight has informed the way we structure our content, which has been broken down into much smaller chunks and made much easier to navigate.
"It's a great surprise when you go into the kitchen and someone's made your coffee and lunch - and it was yourself!"
“You go to remember something and it's as though there's a real hole in your memory.”
We’re also producing content in a variety of formats. Coming soon is a set of breathlessness videos, with positions and techniques to help people take control of their breathing. These videos are guided by a respiratory physiotherapist and, as well as demonstrating techniques and positions, aim to make people feel less anxious about their breathlessness.
“I’d get breathless making a cup of tea. Then I’d sit down or lie down, try not to think about the breathlessness…divert my focus to reading until it calms down.”
Recovery from long COVID isn’t linear
Another thing we’ve learnt through our user interviews is that people recover from long COVID in different ways. Some people gradually see their symptoms improve until they recover, but some have an irregular pattern of recovery, where they have good periods followed by symptom flare-ups.
“On a good day…. not having a headache, muscle pain, being able to look at screen, eat more than one meal a day. On bad days…I’d be sleeping in bed, need to wear sunglasses, couldn't get out of bed, pins and needles all over my body and too exhausted to eat.”
Many people find their symptoms can get worse in response to a trigger. Common triggers include physical activity, stress or having to use a lot of mental energy. How this relapse looks varies from person to person. Many people experience post-exertion malaise – meaning when symptoms worsen after physical or mental exertion. This could come on at any point, from immediately after the activity to a couple of days afterwards. They could then have post-exertion malaise for a few hours, a few days, or a few weeks.
“I’m taking it day by day, really. When my symptoms flare up, tiredness and chest pain would follow.”
People still experiencing post-exertion malaise after six months generally have more symptoms at the end of this period than those who haven’t experienced post-exertion malaise. This shows that fatigue is a crucial symptom to take into account when supporting people with long COVID, as it can affect the degree to which people can engage with information and services.
As we learn more about the needs of people with long COVID, we’ll continue to develop our information so that it helps and supports those who need it.