MEAction editorial: "Inside/outside activism: Why we must shout in the streets and sit at the table."

[Andy]

..almost as soon as ACT UP formed, a group within ACT UP realized: it would not be enough to inform the world of our plight and put the people in power on notice that we’d be holding them responsible for the epidemic’s burgeoning death toll. We, the AIDS community, were the real experts on an epidemic that was baffling the people who had the power. We would have to design the policies that would save us. To do that we’d have to make ourselves expert in the arcane fields of drug regulation and research. Even while we demonstrated on the outside, our goal was to blast down the doors and make our way inside where we could make effective policy.

HIV at the time seemed so strange and forbidding: a bit like ME today, another condition that has devastated the lives of so many people living with the condition and the lives of their loved ones. But ME does have some unique problems. There is no definition everyone agrees on for the condition. We don’t know if there is one causative agent for ME or several contributing factors. We don’t have biomarkers for ME that would guarantee the correct diagnosis or to figure out whether potential treatments are helpful. Unlike with HIV, there is not a growing death count to pressure the establishment into getting serious. Nor are people living with ME concentrated in particular demographic groups or in urban centers which can aid in gaining political clout and getting heard.

https://www.meaction.net/2019/10/03...st-shout-in-the-streets-and-sit-at-the-table/

 

[rvallee]

And there's a solid comparison to make that the people who hijacked ME with their psychosomagic nonsense are to ME what HIV deniers are to AIDS. Their involvement is just as toxic and as devoid of attachment to reality. Main difference is the HIV deniers were kept out while the ME deniers hold a total monopoly and have successfully impaired progress for a whole generation, actually managing to make everything worse in the process, an impressive feat of mediocrity.

The main lesson learned from the AIDS crisis is that no lessons were learned from the AIDS crisis. Even accounting for what was learned from it but erasing specific knowledge of it, if it happened today it would roughly unfold the same way. Only technological progress would make it faster, everything else is just as lousy. Despite that, the AIDS crisis was handled far better than what ME was subjected to.

If only we could be healthy enough to do what ACT UP did, a fact as absurd as it's accurate.