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‘Post’ and ‘syndrome’ are inaccurate and stigmatising.
They've been weaponised against patients with ME/CFS for decades.
We can’t let that continue.
But going against convention opens cans of worms for agencies. If they change it for us, others may ask for the same. /1 https://twitter.com/LongCovidSOS/status/1323630821228580870
They've been weaponised against patients with ME/CFS for decades.
We can’t let that continue.
But going against convention opens cans of worms for agencies. If they change it for us, others may ask for the same. /1 https://twitter.com/LongCovidSOS/status/1323630821228580870
Words have their dictionary definition (denotation), and their cultural definition (connotation).
‘Post’ and ‘syndrome’ fail on both counts. 'Post’ means ‘after’, and we don’t have data to support this.
‘Syndrome’ refers to characterised symptoms, which is also inaccurate. /2
‘Post’ and ‘syndrome’ fail on both counts. 'Post’ means ‘after’, and we don’t have data to support this.
‘Syndrome’ refers to characterised symptoms, which is also inaccurate. /2
The connotations are equally powerful.
‘Post X Syndrome’ means benign, forgettable, weak, and incurable. This cultural bias, likely borne of self-preservation and denial, is deep-seated enough to affect research funding.
People don’t want to acknowledge these conditions. /3
‘Post X Syndrome’ means benign, forgettable, weak, and incurable. This cultural bias, likely borne of self-preservation and denial, is deep-seated enough to affect research funding.
People don’t want to acknowledge these conditions. /3
‘Opposite bias’ will be in play too.
Positioning ‘post’ as 'after acute' signals it is black-and-white. Covid = serious and needing attention, while Post-Covid = not serious, and meh.
It doesn’t capture the reality of clots, low-oxygen saturations, and cardiac damage. /4
Positioning ‘post’ as 'after acute' signals it is black-and-white. Covid = serious and needing attention, while Post-Covid = not serious, and meh.
It doesn’t capture the reality of clots, low-oxygen saturations, and cardiac damage. /4
#LongCovid is patient-made, inclusive, and freeing. It gets attention. It is ‘polyvalent’, meaning it has the openness of an umbrella term, with little risk of being turned upside down (a wastebasket).
I’d like to see the similar open language for other conditions. /5
I’d like to see the similar open language for other conditions. /5
In short, 'Post-Covid Syndrome' holds us in chains.
It doesn't come from patients, and will be used against us: medically, socially, and politically.
*hands the term back*
/end.
It doesn't come from patients, and will be used against us: medically, socially, and politically.
*hands the term back*
/end.
