Guardian — ‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten, 2025

SNT Gatchaman

SNT Gatchaman

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Often, long Covid patients experience mild primary infections, are never admitted to hospital and only realise there is a problem later, when the symptoms persist well beyond the usual two weeks. Some make a full recovery, some see improvements over time; others, like Brown, have seen little progress since being infected five years ago.
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Olympic athletes, dancers, circus performers, actors, RAF officersand more have had their lives turned upside down by the illness; many have been left unable to work. While there are certain factors that make long Covid more likely – it appears to be more prevalent in women, those with pre-existing health conditions and people facing socioeconomic deprivation – it can affect people from any background, irrespective of age or prior fitness levels. “Long Covid can happen to anyone,” says Heightman. “Often the people we see in clinic were completely well before, and now they’re really poorly. It is more common in women, but 30-40% of our patients are men.”
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The numbers of sick people leaving the UK workforce are at record highs, and there are endless articles bashing the unemployed, with titles such as “Who are the millions of Britons not working, and why?”. But these often make no mention of the words “long Covid”, and barely refer to the recent global pandemic.
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In 2022, Wes Streeting was reassuring people about how seriously Labour took long Covid, but now he is health secretary it seems to have dropped off the agenda. In the Get Britain Working white paper set out last November by the Department for Work and Pensions, long Covid is not mentioned. “It feels to me like the government isn’t putting two and two together: the shortage of nurses, all the people out of work since Covid,” says Matthews. “No one seems to say, ‘Oh, it’s probably because loads of people have long Covid.’”
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“I’ve given up a bit,” says Matthews. “Nobody knows what to do with us, so it feels hopeless. I don’t know if it’s ever going to happen, but I’m waiting for some big breakthrough.” If she was magically cured tomorrow, what would be the first thing she would do? “I’d go for a swim in the sea, go for a run, and then go on holiday. And maybe climb up a mountain.”
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It’s the same in Norway. They talk about how people’s values have changed for the negative, and that some people are ‘hunting’ for a diagnosis.

It makes me believe that politics is more about forcing your worldview upon society, rather than trying to figure out what’s best for society as a whole. It’s like they already have the answers, regardless of the variables. No wonder BPS is accepted.
 
Eleanor said:
I've emailed to suggest they correct the statement that 'Roughly one in 10 long Covid patients go on to be diagnosed with PTSD' - that's from a study following up hospitalised patients in 2021.
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The statement has now been changed to 'Long Covid patients are at a higher risk of going on to develop PTSD'. The link is to a UCL leaflet on Long Covid and mental health which just repeats the same claim with no source. I guess at least that's slightly better.

(the UCL leaflet also talks about 'quota-contingent pacing', i.e. GET, which is a euphemism I haven't come across before.)
 
Eleanor said:
The statement has now been changed to 'Long Covid patients are at a higher risk of going on to develop PTSD'. The link is to a UCL leaflet on Long Covid and mental health which just repeats the same claim with no source. I guess at least that's slightly better.

(the UCL leaflet also talks about 'quota-contingent pacing', i.e. GET, which is a euphemism I haven't come across before.)
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Is it better? Or should they have put a caveat and a link to the paper that made it clear this was because they’d been hospitalised (rather than the mild covid —> long covid)

I mean those who think they know about ptsd should be thinking it is a matter of logic that the part of the cohort that has been through trauma of having severe covid might have post-trauma is a different thing to study separately to the experience of those who didn’t end up hospitalised with covid ?

And isn’t it useful for those who had been in that hospitalised cohort for it to be understood that it has something to do with the experience of having the severe covid and the hospital experience they were put thru due to that, rather than it being something pathological to ‘once they get long covid, even if they didn’t have covid severely’? If that’s the only thing they’d reference could be making that pint based on?
 
I'm also unimpressed with the sum total advice for universities:

Supporting students means listening sensitively and non-judgmentally and signposting them to sources of help within the university, for example, mental health support services. Heads of Departments should also be informed and educated on Long COVID and therefore be able to grant concessions and extensions for students with Long COVID. Additionally, universities can encourage students to be assessed for DSA (Disabled Students Allowance).
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Sean said:
:banghead:
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It is weird because the leaflet describes how there are two types of pacing: quota-contingent and symptom-contingent and then tells people they can read more about which type is appropriate for them by 'clicking here' and linking to longcovidphysio: Pacing — Long COVID Physio

and then basically focuses on its assumptions that quota-contingent is 'pacing' (laypersons fallacy)


whilst the document they linked to makes it clear that symptom contingent is actually the real pacing - by not mentioning quota-contingent any further and then going on to describe symptom-contingent and why
 
bobbler said:
It is weird because the leaflet describes how there are two types of pacing: quota-contingent and symptom-contingent and then tells people they can read more about which type is appropriate for them by 'clicking here' and linking to longcovidphysio: Pacing — Long COVID Physio

and then basically focuses on its assumptions that quota-contingent is 'pacing' (laypersons fallacy)


whilst the document they linked to makes it clear that symptom contingent is actually the real pacing - by not mentioning quota-contingent any further and then going on to describe symptom-contingent and why
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There are two ways to drive a car - above the speed limit and at the speed limit. Read about the traffic laws to find which one is right for you!
 
Utsikt said:
There are two ways to drive a car - above the speed limit and at the speed limit. Read about the traffic laws to find which one is right for you!
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I'd say there are two ways to drive a car,
as fast as you can, pushing yourself above what is safe for the road, weather and traffic conditions, driver's skill and speed limit,
and at what is safe for the road, weather conditions and traffic conditions, within the speed limit, and within the driver's skill capacity.

My point being that it's more complicated than just quota contingent.
 
Trish said:
I'd say there are two ways to drive a car,
as fast as you can, pushing yourself above what is safe for the road, weather and traffic conditions, driver's skill and speed limit,
and at what is safe for the road, weather conditions and traffic conditions, within the speed limit, and within the driver's skill capacity.

My point being that it's more complicated than just quota contingent.
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Avsolutely. My comment was meant as a dig at the incompetence of the writers that gave the impression that an option that’s clearly wrong is actually valid. Pacing is clearly more complicated than ‘driving at the speed limit’.
 
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