Long COVID and the Rise of Digital Patient Activism, 2025, Mendenhall

[Dolphin]

https://online.ucpress.edu/currenth...11/Long-COVID-and-the-Rise-of-Digital-Patient

Research Article January 01 2025
Emily Mendenhall
Long COVID and the Rise of Digital Patient Activism
https://doi.org/10.1525/curh.2025.124.858.9

HIV patient activism has had a profound influence on the embodied health movements that followed it.

Complex chronic conditions—for which there is no verifiable test or clear treatment program—have been called “illnesses you have to fight to get,” in part because patients struggle to convince doctors to take their pain seriously enough to give a diagnosis.

This essay puts Long COVID into context with other embodied health movements, highlighting how Long COVID activism built upon previous social movements, and how digital networking and viral social media messaging set it apart.

• Long COVID, COVID-19 pandemic, HIV, patient activism, disability activism, health care

https://twitter.com/user/status/1875965777175789746

 

[rvallee]

I don't think that's an accurate framing. For one thing, that activism has made zero difference. They do describe that it's nothing new, and offer HIV as the prime example, but ME/CFS activism is a direct line to LC activism, one and the same really, and it hasn't made any difference other than the sheer size of it.

Despite which, it has lead to nothing at all. The exact same outcome: 100% failure. Patient activism is soundly rejected by medicine, which wants nothing to do with it and in fact clearly sees it as adversarial in a "oh, so you're criticizing us for not doing a good job, uh?! well we'll ignore you further and say bad things about you all the time". Because this is who they are.

Nothing is rising. In fact LC activism has since deflated completely. Because none of this matters. Medicine is the gatekeeper and they don't give a damn about us. Chronic illness is still the same topic of mockery and disdain, a peek at medical forums makes it clear that if some of them have changed their minds, they are in the hundreds. Out of tens of millions, that's nothing.

So this is more in line with decades of articles framed as "things are changing for people with ME/CFS". No, they're not. And the fault is 100% on the medical profession. They don't want to change and no one in a position to do something has the courage to even try. They are stuck in their old ways and will see all of us dead before they move an inch. As they always have.

Ultimately this is about tens of millions of lives. Polite language doesn't cut it, it will never make any difference. Neither do any appeal to humanity, to compassion or any of this. It should be framed as a crime against humanity, which it very much is. But even that's impossible. Spelling it out loud for what it is is politically impossible. No major controversy can be addressed when simply voicing it is impossible.

Change will only come from a breakthrough in pathophysiology, and then it will only matter for the specific problem it can show, and no further. This is how medicine functions, this is who they are and what they do. They have made it very clear that they'd rather ruin tens of millions of lives than admit they got it wrong, prefer to ram the ship into the iceberg every single time before they let some pesky commoner tell them that it never works out well for the passengers.