I& #39;m sad, confused, and exhausted to see @NICEComms, @rcgp, and SIGN haven& #39;t listened.

Our illness is not & #39;Post-Covid syndrome& #39;.

It is #LongCovid.

I didn& #39;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">https://www.nice.org.uk/news/arti...

I said:

& #39;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.& #39;

/2

& #39;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. & #39;

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">https://blogs.bmj.com/bmj/2020/...

I won& #39;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& #39;t belong in parentheses, and neither do we.

/end.