Thread by @ahandvanish

I feel bad for everyone who was exploited in this article. The blame obviously lies with the author; I can't get over the fact that there are people willing to try to discredit the experiences of millions of people, in exchange for some funding behind the scenes.

But...

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https://twitter.com/shelbyhedgecock/status/1440485728966754306

I also think there were advocacy gaps that allowed this to happen. And I feel frustrated, because this harms our whole movement.

I hope #LongCovid groups take away a few lessons from this, including:

Advocates must be historically informed. There's a long history of...

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discrediting virus- and infection-initiated illnesses, in many cases starting with articles just like these. This happens constantly in ME & Lyme & happened early on with AIDS & other illnesses, & has started ramping up with #LongCovid.

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A lot of institutions stand to lose a lot of money from waves of newly disabled people, & have the resources to sway the narratives around it. It's important to a) be aware this is happening & b) be able to recognize & not strengthen the people who are in this camp. #LongCovid
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Once you learn it, it's easier to see. This is especially true with pieces like this- to an uninformed eye it initially looks innocuous, but on second read is full of intentionally discrediting & undermining language.

Being historically informed is not perfect protection -

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there are always some writers who are insidious, who don't list their funding or past works online, or don't answer questions, etc. But being historically informed does make it more possible to recognize & not grant interviews to those fostering this agenda. #LongCovid

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Secondly: getting press and/or attention can't be the goal of advocacy. All press is not good press!

Basic checking of journalists' backgrounds is necessary. This one's history was found easily.

https://twitter.com/emily_rj/status/1440936029725286400

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You *have* to ask yourself why someone is writing the article, and not let ego answer for you. Be careful who you work with and make sure it is in the service of the movement. Err on the side of caution where it seems vague.

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Third: work with multiple people & groups, lift up work that is not only your own. Anything that centers one person is harmful not only as a movement, leaving out countless views and perspectives (no one can be 100% right or see every issue!), and is also exploitable.

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Prioritize patient-led engagement. #NothingAboutUsWithoutUs & related concepts shouldn't be new to anyone in this space, whether they are a patient or ally. Advocacy issues should be decided by patients; patient voices should be highlighted (not going through a middleperson).
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If you make a mistake, don't buckle down on it. Everyone makes mistakes! I personally have made more in the last 18mo than I can count. But the way through is to address it & make changes going forward. The more this article spreads, the more it will harm #LongCovid...

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patients. Good non-patient allies serve the patients they work for. That means listening to them and doing better. #LongCovid

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Being historically uninformed, focusing primarily on press/attention, & centering one person are all exploitable. Knowing your history & focusing on careful collective advocacy goals are vital. Self-interrogate often.

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We're all human & we're all works in progress. I believe in restorative practices & hope there can be changes moving forward. #LongCovid

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