What should long Covid be called?

What should Long Covid be called?

Long Covid is the name that patients came up with for this condition when it first emerged in 2020. This is what it tends to be known as most commonly and in the media. Sometimes other terms are used for the condition. In the National Institute for Health and Care Excellence (NICE) guidelines, the term ‘post-Covid-19 syndrome’ is used. We spoke to people about the importance of having a name for the illness and their feelings about what the name should be.

This page covers:

  • The importance of being able to put a name to an illness
  • Reasons why people liked or disliked different names like ‘post-Covid-19 syndrome’ or ‘Long Covid’

The importance of being able to put a name to an illness

Before ‘Long Covid’ became the name that began to be used more widely in the media, many people struggled to describe what was happening to them. In 2020, Ben had seen people “struggling with how to explain it to their partners, their family, their friends, their work… How do I say this in a way that people are going to understand?”. Having a name or a label for their illness made it recognisable to other people, even if they didn’t fully understand what it was like to have Long Covid. Ben said that it helped people to ‘connect’ and have a better understanding: “Ok this is what he says he’s got and this is what the media says about it”. Judy said, “It’s quite useful to have a phrase that you can attach to it”. She said this helped other people to understand a bit more about what she was going through because they may have read about it or seen something on television. This saved her having to go “into too much of the gory details”.

Ben felt that people with Long Covid began to get somewhere when they had a term to say “that’s what I’ve got.” Without a label for the illness it was difficult to access support.

Age at interview 28

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Reasons why people liked or disliked different terms like ‘post-Covid-19 syndrome’ or ‘Long Covid’

It “slightly irritated” Jennifer if people used the phrase “supposed Long Covid” in news stories because “it is Long Covid, it’s got an official NICE guideline now, it’s not ‘supposed’”. Tom said that initially some doctors and consultants he saw were “very nervous” about using the term ‘Long Covid’ for his illness but had no problem labelling it a “chronic fatigue”. One specialist he saw in 2021 even said “I don’t believe in Long Covid”.

Some people we spoke to had first had Covid before there was any testing available. This could make the labelling or naming of their illness difficult. They often found that their illness was referred to as “suspected” or “supposed” Long Covid because their initial infection had not been confirmed. Jennifer said this was “annoying” because “my doctor says there’s no question that I’ve had it, but she still puts ‘suspected Long Covid’ because I didn’t have a test”. Ben said that he “pushed quite hard” with his GP to “get a clarity” on what his illness was and in the end his GP had put ‘post-viral fatigue syndrome, likely to be Long Covid due to Covid infection’.

People discussed what the general public might understand by ‘Long’ Covid. Anthony thought that the name ‘Long Covid’ may not be helpful. He wondered whether “if you refer to it as Long Covid, I think people will regard it as basically Covid that’s continuing”. Sarah wondered if people might still think that she was contagious when she said she had Long Covid.

Because people had “almost taken a step back” when Sarah had said she had Long Covid, she thought the name might carry a bit of stigma.

Ben thought ‘Long Covid’ was a useful catchphrase but saw some advantages in using the term ‘post-Covid syndrome’ in the future.

Grayson thought ‘post-Covid’ might be a better name than ‘Long Covid’ “because it’s not the same symptoms repeated, on the whole”. Adele recognised that people’s understanding of Long Covid was “variable” because so many different types of symptoms “get lumped together” under the umbrella of Long Covid. Laurie thought this confusion may grow as more and more people developed Long Covid.

Adele thought ‘Long Covid’ was fine for now until sub-types were identified. But ‘post-Covid syndrome’ might be too like ‘chronic fatigue syndrome’.

Laurie preferred the name Long Covid because people are “experiencing a long, long, long, long illness”, with a bigger wilder pool of symptoms.

Sofia found Long Covid “a bit weird” because no-one understands whether ‘long’ means weeks, months or even longer. She though ‘post Covid symptoms’ made more sense.

Faatimah said she would change the words she used to describe her illness depending on who she was talking to. She thought that two years into the Covid-19 pandemic, “nowadays, if you say, ‘I have Long Covid’ people kind of know what you’re talking about”. But like Adele, she thought because ‘Long Covid’ was “like an umbrella term for lots of different symptoms that people can have… I think that’s why people still get confused… if I said ‘Long Covid’ nowadays people would know what I’m talking about, but I don’t think they could imagine what I’m going through. They have a specific idea of what Long Covid is and that’s not what it is for me”.


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