Lesbian AIDS: An Illness of One’s Own?, 2025, Rogers

[Utsikt]

In general I don’t like comparing diseases, but we can’t get around the fact that in a capitalistic world, everything is compared to everything. We have to speak their language if we’re going to have any chance of receiving funding.

Even though I wish it would be sufficient to say that «ME/CFS is a terrible and not too uncommon disease with no treatments - please give it a fair amount of attention and resources».

If there’s anything we can learn from the history of HIV/AIDS it’s that the world isn’t fair.

 

[elimrogers]

we can’t get around the fact that in a capitalistic world, everything is compared to everything.

Strongly agree and likewise wish it were sufficient. The goal of my work is to shed light on why.

To the earlier post, I will add the context that I think there's a way to compare diseases without flattening differences or wishing gay men dead (as some of the writing I discuss did, which you can see in the article, but I understand the various reasons folks are choosing not to read it/are unable to read it). Ultimately, the article is about how gay men with AIDS were positioned as the antagonists of lesbians with dismissed chronic illnesses. Calling it "problematic" is not to say that people aren't allowed to compare diseases, but rather that the way these writers went about it did not end up being an effective form of advocacy back then, and perhaps we should be be mindful and strategic about how we do so in the present.

 

[Utsikt]

Ultimately, the article is about how gay men with AIDS were positioned as the antagonists of lesbians with dismissed chronic illnesses.

Are there examples of broader campaigns by pwME/CFS or pwLC that employ a similar narrative today?

My impression is that things are generally lumped together into PAIS or whatever, which appears to be very counterproductive because it hampers scientific progress when nobody gets into the details and the specifics.

 

[Verity]

Calling it "problematic" is not to say that people aren't allowed to compare diseases, but rather that the way these writers went about it did not end up being an effective form of advocacy back then, and perhaps we should be be mindful and strategic about how we do so in the present.

I am a bit confused because this is not the same reasoning you gave in your earlier comment for calling it problematic.

I am not able to read your full paper because of my ME. I just wanted to respond to your comment that said it was problematic for people to compare ME to AIDS because it could cause hard feelings between ME and HIV patients (deeply unlikely to be a significant problem) and because AIDS isn’t fully “solved” (but it is highly treatable, which is the whole point of the comparison). I don’t think these are good objections. It sounds like you raise other objections in your paper, but that isn’t what I was trying to respond to.