I'm sad, confused, and exhausted to see @NICEComms, @rcgp, and SIGN haven't listened.

Our illness is not 'Post-Covid syndrome'.

It is #LongCovid.

I didn't review the guidelines, but I wrote to these groups from @LongCovidScot, prior to naming...

/1 https://www.nice.org.uk/news/article/nice-sign-and-rcgp-set-out-further-details-about-the-uk-guideline-on-management-of-the-long-term-effects-of-covid-19

I said:

'Patients strongly prefer the term Long Covid. Terms like ‘Post-Covid Syndrome’ present inaccuracies, implying the main illness is ‘over’, despite many feeling much more unwell at 6 months than in the initial weeks.'

/2

'Persistent infection is also still a possibility that is yet to be ruled out. The terms ‘post’ and ‘syndrome’ carry a long legacy of stigma, and so we ask they are not used. '

I linked to a piece I co-authored, as a linguistic bias expert:

https://blogs.bmj.com/bmj/2020/10/01/why-we-need-to-keep-using-the-patient-made-term-long-covid/

/3

I won't have been the only one to question this.

They have gone with a term patients do not want, that contribute to inaccuracies and stigma.

This will affect patient outcomes, and possibly patient safety.

/4

Please @NICEComms, @rcgp, @MartinRCGP @qureshisafia1-- listen to patients.

We took what little good time we had to inform you, as active partners in our care.

We deserve more than lip service.

Our condition doesn't belong in parentheses, and neither do we.

/end.