Good to see #LongCovid getting more attention, but wow, do I see some alarming medical field biases in this article. (Not remotely @guardian’s fault, to be clear). Thread time! (1/13) https://www.theguardian.com/society/2021/jan/05/many-long-covid-sufferers-unable-fully-work-six-months-later

“Fewer than a third of respondents in the survey also had a confirmed Covid-19 infection. ‘There may be differences in terms of … those with confirmed infection & those without,” said Dr Tim Nicholson.”

True from a scientific perspective but a bad idea to say w/o context! 2/13

*Many* people couldn’t *get* tests in March/April, so dividing them into “confirmed” and “unconfirmed” infections is much more arbitrary than the medgeeks want it to be. Did you happen to get a test? Lucky you, you’re “valid!” Didn’t get one? You’re a different cohort then! 3/13

This happens all the time in medicine more generally. I couldn’t get a confirmed RA diagnosis for 3 years. It doesn’t mean I didn’t have RA then. I just couldn’t get anyone to *listen* to me. #LongCovid folks have already been ignored/dismissed/pushed off for *months*. 4/13

Artificially dividing them into “valid test” and “no test, so maybe #LongCovid, maybe it's some magically different thing, and maybe they’re LYING!” is not helpful, even if it sounds interesting to the boffins. 5/13

Let’s look at another “sounds good, but is not helpful” line: “People who recover from #LongCovid are less likely to complete the survey limiting the comparison of those who fully recover to those who don’t.” 6/13

Sure, but that’s the case with *every* illness. Compare: “Most asthmatics don't see pulmonologists.” Yes, and? This taints “we want more data” (rational!) with a certain air of “people with more severe symptoms might just be malingering.” (Untrue, gross, gaslighting.) 7/13

And the final one: “doctors assessed the patients in hospital and checked their medical records, but some patients may still have had undiagnosed cognitive problems before they became infected.” Again, sure, this could be true and is worth study, *but*... 8/13

There’s an air of “well, if they had undiagnosed cognitive problems *before*, then they should be treated *differently* (i.e. less-thoroughly/taken less seriously) because that means any cognitive problems they have now aren’t *really* down to #LongCovid.” Ew, ew, ew, ew. 9/13

This isn’t The Guardian’s fault, these are things the *doctors* said. And they worry me. #LongCovid folks need to be aware that this is *already* happening - the medical establishment, in its desire for nice “clean” data, is already trying to divide you into “valid” & not. 10/13

#LongCovid folks need to resist. It’s draining & terrible & you shouldn’t have to fight this battle on top of the rest, but no one will fight it for you (trust me, I have a lifetime of experience). Dissent *loudly* when this happens. Even when you’re tired. Especially then. 11/13

#LongCovid is one of the largest groups with the same condition in history. If you stick together, they won’t be able to fob you off. You’re not there to make their data look nice. You’re there to get answers (and hopefully to get well!). They’ll get their data in due time. 12/13

& because there are so many of you, & you all have different medical histories, it’s going to be messy data. That. Is. Not. Your. Problem. You should feel free to repeat that as many times as necessary. You not fitting what they think they should see is NOT your problem. 13/13