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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So, you’re caught in this kind of middle ground, and you think, okay, either this has to last a year and I get one badge, or it clears up and they put another badge on it, and it was just a long bout of Covid. So yeah, it was… I pushed quite hard with my GP to get a clarity on what it was, and in the end, we put post-viral fatigue syndrome, likely to be Long Covid due to Covid infection at a time, it wasn’t for sure at the time. But again, that particular element of it has been really challenging in terms of accessing some of the support. There’s been a lot of you need to have a positive Covid diagnosis. At the time Scotland wasn’t doing widespread Covid testing. It was, did you match the symptoms, you had Covid. That became a slight stumbling block in terms of getting it recognised, but there was…I think the first time it was on the news, I was, like, okay, like now we’re getting somewhere, now we actually have a term that we can all group under and say that’s, that’s what I’ve got.

 

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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.

Yeah, I’ve thought about it a little bit actually. I think, I don’t know if I’m right in this, I feel like over in the US they tend to call it long-haul Covid a bit more. And here it tends to be Long Covid. But I have also thought about myself calling it post viral Long Covid.
 
Because I think essentially that does, that describes perhaps better for some people how I’m, how I am. It is you know, a post-viral and like I mentioned before, the links with [um] or similarities with chronic fatigue syndrome and ME and things. So, I have thought about that describing it. And, and I again I’ve sort of thought about whether for some people I should call it that and some people I call it Long Covid. But generally, I use the term Long Covid at present. I was aware at one point that I’d said, I’d sort of met people and I’d sort of said oh, I’ve got Long Covid, and they’d almost like [laughingly] taken a step back and pulled their mask higher.
 
As if to think that I was still contagious or something.
 
Which isn’t the case, but it might carry that sort of stigma a little bit, especially if people don’t understand it.
 
So, I sort of, you know, obviously then reassure them that, you know, I’ve, I’ve been testing negative ever since, you know, a week or so after the infection [laughs]; it’s just the after-effect so.

 

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

Do you feel that Long Covid itself is a good description for the condition?
 
The more I think about the other names that are out there for it, I think post-Covid, post-Covid syndrome, PCS, yeah, PCS, I think post-Covid is actually better than Long Covid. I think Long Covid, and it could just be my association with the word long, it means your initial infection has lasted a long time, whereas actually post-Covid syndrome, you were unwell with Covid, you…and certainly for me I returned to health for a month and then everything else kind of went downhill from there. So I think there’s still a better name to be found. I think it’s more towards the post, if you consider post-viral fatigue is the normal terming, you had the virus, you recovered, got the fatigue afterwards. I think Long Covid, while it was a good tagline and where it did help connect to having had Covid, I think there can be a misunderstanding that you still have all of your traditional Covid symptoms which I don’t. I don’t have some of the, the kind of text mark Covid ones, I just have these kind of fatigue syndrome condition symptoms.
 
But I think it’s been, it’s been helpful as a, a catchphrase. It’s been helpful as a…I know often when you start having to kind of use acronyms and stuff like that, it can get very confusing, so Long Covid has been helpful for a, a buzzword headlines…
 
You’re filtering through a newspaper or a book, oh, there it is, you know, you know where it is, whereas if it was I think chronic fatigue is, hmm…S…CFS is often initialised to that, and sometimes you can miss that when you’re reading through it, so I think Long Covid has helped get us to a point where we’re now having the discussions, I think there is a better terminology longer term, a bit along the lines of post-viral or post-Covid those might be more suitable.

 

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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’.

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So, I suppose the other thing is how the term Long Covid is used, but how do you think it should be described, would that be your preferred term, or is there a different form of words that you’d feel more comfortable with?
 
I mean, for me, I think, Long Covid, is fine, for now.  I think it would be good if, if sub-types could be classified, or if, when additional research is available, that it might become apparent that it’s not all one thing. But at the moment, an umbrella term is probably alright. And Long Covid doesn’t bother me at all. Post-Covid syndrome, I don’t really like, I think, I think NICE were trying to push for that at one point. Yeah, it, it sounds a bit like chronic fatigue syndrome, and I think that people are very worried about both conditions being condensed into one.  And again, chronic fatigue is another condition that’s been given a very hard time, and probably consists of different sub-types, but has just been lumped into one thing. So yes, Long Covid is fine for me.

 

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

That’s why we were so certain that the term Long Covid still is valid, because we still don’t know whether we’re post-anything you know. Post Covid syndrome has no validity to me because we don’t know that we’re post anything [laughs], we really don’t and post-acute. Now I feel I feel that I am post because I think the vaccine dealt with whatever viral remnants were continuing to aggravate my immune system. I feel post, but that’s my feeling, right? That’s just something that comes from me.
 
But the quality of knowledge and the confidence that I have in my argument about Long Covid and having Long Covid does come primarily from the strength of the shared experience and although I realise that the more people that you have in any in in in any parts that you’ve got. I mean I’m in an N equals one study, and the whole Long Covid community is at N equals, I don’t know how ever many million people who believe that they are suffering from Long Covid, and the more people you have in that in that patient group, the wilder you are going to, you know, the 200 symptoms or whatever that have been clocked up as being as being evidence of Long Covid. You know that that pool is just going to grow and grow, the weirder things are going to happen. So, I still you know, I suppose what I’m saying is that you can’t start to name something post, post-acute or yeah I think that’s the one that’s stuck isn’t it, post-acute Covid syndrome, syndrome that’s a syndrome.
 
Can’t put a name on it because we still don’t really know what it is and also syndrome is one of those words that, that signals to me that [laughs], that it’s just something that happens. So Long Covid still has validity for me, because it is what we’re experiencing, we’re experiencing a long, long, long, long illness after an initial phase of infection. That’s all we know.

 

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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.

So, yeah, so I don’t really. And if I was healthy and no problems from before then I can say yeah. But I think they should maybe, they need to change the name or something. Long Covid I find a bit weird, isn’t it?
 
What do you think’s weird about it?
 
I don’t know, Long Covid we don’t know if it’s going to last up to six months; it could last longer; it could last less, three months. I don’t know, post Covid or something, maybe that might be something.
 
Post Covid.
 
Yeah. Something like that may be something better. Because how long is long? How long, do you know, it could be eight months, it could be a year. It’s not a fixed six months; it could be longer. Post Covid symptoms, that sounds a bit more, better.
 
So, for you the term post Covid symptoms resonates more with you, you think that’s better?
 
Yeah, it makes a bit more sense, because you don’t know it’s going to last six months. So, and people turn around and say to you, oh it lasts up to six months, you don’t know that because it could go up to eight months it could go up to a year. People I’ve seen… I know of people that have been in hospital for like eleven months and they’ve still got Covid haven’t they?
 

 

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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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