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

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.

 

It's a shame the article leans so heavily on Ben Sinclair, but at least he doesn't get to do his psychobehavioural spiel.

 

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.

 

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.)

 

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:

 

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

 

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!

 

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’.

 

See, it's not a pyramid scheme, it's clearly a reverse funnel system. Totally not different.

 

Maybe it’s based on “Business Secrets of the Pharaohs”

 

I once compared ME/CFS to Corvair: unsafe at any speed.