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

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Signs: Journal of Women in Culture and SocietyVolume 51, Number 1

Lesbian AIDS: An Illness of One’s Own?​

Emily Lim Rogers

Abstract

This article examines the term “lesbian AIDS” as a lens to explore contested definitions of lesbian identity, community, and illness during the AIDS crisis (1989–99). Drawing on lesbian archives and chronic illness narratives, it investigates how chronic fatigue syndrome and related conditions were politicized in relation to AIDS, reflecting competing frameworks of illness and identity. The article analyzes how these debates shaped activism, ranging from separatism to coalitional organizing, and offers lessons for contemporary health movements, including long COVID advocacy.
 
It's hard to know exactly where this paper is going from the abstract, and if it's a helpful direction.

Certainly, the characterisation of the AIDS crisis as being only about homosexual men would be inaccurate. I found this commentary that seemed relevant:
On July 3rd, 1981, the New York Times quietly reported of a “Rare Cancer seen in 41 Homosexuals.” Early news coverage of the AIDS crisis, like the below 1983 article “Homosexuals Confronting a Time of Change,” characterized AIDS as a disease of only gay men, highlighting what was seen to be “differences in styles of life for homosexual men and women.” Even today, lesbians are frequently characterized only as the nurses of the AIDS crisis, remembered only for the role they played in caring for gay men. Though medical caretaking was a huge part of lesbian AIDS activism, this characterization erases the direct impact AIDS had on lesbian communities.
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Lesbians did die of AIDS. In 1991, about forty percent of HIV-positive individuals and twelve percent of AIDS patients were women. The definition of AIDS used by the Centers for Disease Control and Prevention (CDC), however, was skewed towards men’s experience with the disease, failing to recognize opportunistic infections that commonly affected women with AIDS, like Pelvic Inflammatory Disease and cervical cancer. As a result, 65% of HIV-positive women died without ever being diagnosed with AIDS. These women, suffering and sick, were ineligible for vital healthcare provided by the Division of AIDS services, like at-home nursing attendants. The CDC’s exclusionary definition led to intense medical misogyny: clinical trials for developing HIV/AIDS treatments excluded “pregnant and non-pregnant” women. This case aims to uncover the critical role lesbians played in the AIDS crisis. Lesbians were caretakers, activists, lawyers, protestor, artists, and historians. They were everywhere.
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A suggestion that AIDs was not and is not a female disease also ignores the huge and ongoing impact on whole communities, both males and females, in poorer countries.

I'm rather uncomfortable with the title of the paper, suggesting as it does that chronic fatigue syndrome could be the 'female equivalent of AIDS', with an almost volitional aspect. As in, choosing to have 'a room of one's own' and 'an illness of one's own', perhaps because others are getting attention.
abstract said:
Drawing on lesbian archives and chronic illness narratives, it investigates how chronic fatigue syndrome and related conditions were politicized in relation to AIDS, reflecting competing frameworks of illness and identity.
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But, it sounds interesting and, as I said, it's hard to know where the paper is going. We have talked before about whether the AIDS crisis has some lessons for ME/CFS advocates.


Perhaps someone with access to the paper can tell us if there is information we should be know or ideas we should be thinking about here?
 
The author has written about ME/CFS previously. See

Dakota15

Post in thread 'News from the USA, United States of America'

Public Books: 'Will “Care” Save Us?'

By Emily Lim Rogers

"It revealed the devastating free fall caused by a vacuum of care. Consequently, anyone writing about bodies, care, disability, and medicine over the last four years seemed compelled to answer the question: “What about COVID? For that matter, what about long COVID?”

While the CDC has acknowledged its existence for four decades, myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) reached new prominence in the aftermath of COVID-19. The virus is causing syndromic postviral illness at massive scale, with many cases of...
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Dolphin

Thread '“When postviral goes viral”. Chapter in “How to be disabled in a pandemic” book'

Kornstein H, Rogers EL.
When postviral goes viral.
How to be disabled in a pandemic [Book].
New York Univ Press. 2025 Feb 25:191.

https://nyupress.org/9781479830855/how-to-be-disabled-in-a-pandemic/

https://books.google.com/books?id=o...n+Postviral+Goes+Viral"&redir_esc=y#v=onepage
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Kalliope

Thread 'A Syndrome in Search of a Virus - ME/CFS, Disease Paradigms, and the Social Function of Pathogens, Emily Lim Rogers, 2024'

Journal: Osiris

Abstract

In 1984, a team of American researchers led by Robert Gallo announced that HIV causes AIDS. Seven months later, the US Centers for Disease Control investigated a postviral illness of unknown cause, which would later be known as chronic fatigue syndrome (aka myalgic encephalomyelitis, or ME/CFS).

This article argues that ME/CFS’s emergence was entangled with HIV/AIDS. Once the cause of AIDS was widely agreed upon by the 1990s, the virus-to-syndrome model became the predominant paradigm for understanding syndromic diseases of as-yet unknown...
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Kalliope

Thread 'Cogut Institute for the Humanities, Brown University - Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)'

A Q&A with Emily Lim Rogers who is a teacher and has a current research project about ME, "probing what scientific uncertainty about the illness reveals about the fraught gendered and racialized dynamics that determine who is considered ill and examining the uneven uptake of debility in the sociocultural contacts of the United States".

Emily Lim Rogers: Unraveling the Knot of Myalgic Encephalomyelitis (Chronic Fatigue Syndrome)

quote:

ME/CFS remains “incompletely medicalized,” by which I mean things are missing or spotty at four levels. First, there is clinical practice: people...
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Sly Saint

Thread 'New York University Center for Disability Studies (CDS)'

Building a community of teaching, research, & activism about disability
In the spring of 2017, the NYU Senate’s Equity, Diversity and Inclusion Task Force approved a proposal for a cross-school Center for Disability Studies (CDS). The Center builds on ten years of activity of the NYU Council for the Study of Disability, funded by the Provost’s office since 2007. Faye Ginsburg (Anthropology/Faculty of Arts & Sciences) and Mara Mills (Media, Culture, and Communication/Steinhardt), who formerly directed the Council, are the current co-directors of the Center.

The Center...
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Dolphin

Thread 'Staying (at Home) with Brain Fog: “Un-witting” Patient Activism, 2020, Emily Lim Rogers (on ME/CFS)'

Free full text:
http://somatosphere.net/2020/staying-home-brain-fog-patient-activism.html/

October 5, 2020
Staying (at Home) with Brain Fog: “Un-witting” Patient Activism
By Emily Lim Rogers
This article is part of the series: Reworking the Cognitive Bias
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http://somatosphere.net/2020/staying-home-brain-fog-patient-activism.html/

Science, Medicine, and Anthropology
A collaborative website covering the intersections of medical anthropology, science and technology studies, cultural psychiatry...
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Jonathan Edwards said:
I see the connection between ME/CFS and AIDS as best forgotton. It gave rise to 'CFIDS', XMRV, ICC criteria and a myth of immunodeficiency. I see words like 'biosocial' and 'cultural psychiatry' here that also don't look helpful.
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The connection is not about the disease process, pathology or anything like it. It's the social dynamics and systemic discrimination that condemn people to a shorter, miserable life. On this they are quite similar, and they reflect completely opposite paths: what happens when necessary advocacy in ending discrimination against a disease works out, vs when it's so thoroughly crushed that even an event like Long Covid doesn't even move the needle one tiny bit.

The AIDS movement was just as reviled as we are at the beginning, but eventually science worked out enough to make people afraid of it, even though the facts of it didn't change. Eventually it was understood that any contact with infected blood could doom people to the same fate, something health care professionals face every single day. I think it was even made into law that HIV+ status had to be declared in some places. This made them share in the stakes, whereas with us no one feels that it could happen to them.

We're still on the other side of this. Ironically even though it is definitely a real problem that any health care professional could face total life destruction from a simple infection, but they don't believe in it, so even though the threat is real, they simply ignore it. Even though the awful reaction to COVID has made this an even bigger threat, by essentially ending most infection control, even encouraging infections as good for health.

The main lesson from the AIDS crisis was pretty much: crush discriminated patient movements hard, make them so unpopular that no one will even think of helping them. Its success hasn't been repeated since. Long Covid was as perfect a test of this as it gets, and it was 100% botched for all the wrong reasons.
 
Hey all, this is the author here. Thanks for sharing and comments. I usually don't respond to these threads, although I am sometimes tempted to because of misunderstandings about my work that have been disheartening (and at times hurtful) on this forum. I live with POTS and EDS and believe we have related struggles and challenges. As someone above said, it is difficult to tell the direction of this article from the abstract alone, because my argument as versus the content of the article isn't fully spelled out in the 150 word limit: I am critiquing the notion of "lesbian AIDS" by looking at problematic comparisons lesbian writers made in the 90s that absolutely obscured women with AIDS and didn't do much to advance the cause, despite mostly good intentions. As others have said, comparisons between AIDS/ME/LC are really thorny, which is what the article is arguing. My email is off of my website due to doxxing I experienced, but you can message me here for this article and any others you may want. Happy to share PDFs. Hope you can read with an open mind and of course the knowledge that writing in the humanities is very different than in scientific and public health journals. I look at the social and cultural dynamics as the last response noted, and I am interested in how they lead to the oppression and dismissal of PwME so that we may combat it on multiple fronts.
Cheers,
Emily
 
Hi and welcome to the forum @elimrogers

Thank you for clarifying what you’re arguing in the paper. It’s a real shame if the style of abstract only allows descriptions of the kind of analysis you’ve done, and nothing about the actual conclusions.

The only humanities-paper I’ve read on ME/CFS so far are some of the ones by Joanne Hunt, and my general gripe with the genre is that 1) it’s largely very inaccessible to outsiders due to the impenetrable lingo, and 2) they often use frameworks to discuss topics even though every single framework is completely arbitrary and usually heavily influences the conclusion.

The second point means that all of the discussions end up being «if we assume that X is true, then Y means Z», but X is hypothetical and can’t ever be verified so it just becomes talk for the sake of talking.

In that way it reminds me of most of the BPS papers because they also build on unverifiable models and never really address the issue. That might explain some of the perceived aversion towards the humanities in general.

It also strikes me that I’ve never seen a humanities paper that explores the history of ME/CFS in the context of scientific ignorance. I’m curious about what an account of the history would look like if you examined what was known at the time and where people made unfounded or unreasonable leaps of judgement one way or another.

My hypothesis is that it would show that even without the privilege of hindsight, ME/CFS is first and foremost a tale of catastrophic ignorance.
 
elimrogers said:
Hey all, this is the author here. Thanks for sharing and comments. I usually don't respond to these threads, although I am sometimes tempted to because of misunderstandings about my work that have been disheartening (and at times hurtful) on this forum. I live with POTS and EDS and believe we have related struggles and challenges. As someone above said, it is difficult to tell the direction of this article from the abstract alone, because my argument as versus the content of the article isn't fully spelled out in the 150 word limit: I am critiquing the notion of "lesbian AIDS" by looking at problematic comparisons lesbian writers made in the 90s that absolutely obscured women with AIDS and didn't do much to advance the cause, despite mostly good intentions. As others have said, comparisons between AIDS/ME/LC are really thorny, which is what the article is arguing. My email is off of my website due to doxxing I experienced, but you can message me here for this article and any others you may want. Happy to share PDFs. Hope you can read with an open mind and of course the knowledge that writing in the humanities is very different than in scientific and public health journals. I look at the social and cultural dynamics as the last response noted, and I am interested in how they lead to the oppression and dismissal of PwME so that we may combat it on multiple fronts.
Cheers,
Emily
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Hello

I found the title concerning due to my understanding of jokes from the 90s UK that it was unfair lesbians wouldn’t get AIDS (which is untrue, in particular in instances in South Africa of so called “corrective rape”). Even in 1999 the film “Boys Don't Cry” was released, I think there was some understanding that women and trans men are always at risk of rape by men.
I think we in the UK in recent years there has been a move to remember the role of the lesbians who are nurses and caregivers who rallied round to look after the men dying of AIDS in hospital and the subsequent change of landscape (or not, looking at you RVT) in gay and lesbian culture where gay pubs were geared to men and didn’t even have female toilets, so unwelcome were lesbians in the 70s and 80s. Often the only nurses willing to look after AIDS patients were lesbians.

I mentioned South Africa and it’s worth mentioning that I have a UK view, I don’t have an African or South American view but I know in both places lesbians often had to hide their sexuality and marry men, in any case in more religious societies like these AIDS was rampant in men and women due to lack of contraception and education, meaning lots of women and lesbians had AIDS.

It’s a particularly triggering title, and if it can’t be easily explained in a few words, or even 150, then I think it’s a bad title, and it will put some people off. If some lesbian writers wrote pieces which unintentionally obscured the experience of women with AIDS over 30 years ago in the last century then that’s a shame but honestly all I can see this title doing is offending a lot of people like me, or giving a good laugh to people who aren’t at all like me and I don’t want to converse with. It sounds like you’re punching down on lesbians. It sounds homophobic.

Am I correct in surmising that your titular paper is not about lesbians or AIDS and is about ME/CFS?
Have you thought of just talking about that and not lesbians or AIDS? Or using a better, less complex and more relevant metaphor? Women and their experiences have been erased throughout history, on a much larger scale than this incident you have selected so I am sure you can find an alternative example, unless it is the “click bait” horror of the title which drew you to it?

Personally I’m not a fan of ME/CFS “appropriating” other circumstances, having lived through Hillsborough (although I can see why people make comparisons on an intellectual level, I don’t like it) ME/CFS is bad enough as is without comparing and contrasting it to AIDS or Hillsborough or any other trauma, some of us already have the trauma.

Edited to add more because this is super upsetting
 
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Hi @elimrogers, welcome to the forum. Thank you for being brave enough to join us despite your anxiety about getting negative comments. Having only read the title and abstract, I can't say whether I would find the ideas in the article helpful or not.

I accept that the social science journals require you to write short abstracts which don't provide any clue to the conclusions you draw from your study of the topic, but I find that very disappointing as I feel none the wiser about whether I will want to read the article.

Given all my current demands and limitations I am disinclined to take up your offer of a copy to read, but would be very interested in a brief summary of your argument and conclusion in plain English.

Someone else mentioned Joanne Hunt who writes social science journal articles about ME/CFS which use the language and theoretical constructs of that discipline that I find tend to obscure rather than enlighten. She also writes a blog where she puts her ideas in plain English which I find much more accessible and interesting. Perhaps you might consider doing the same if you want a wider audience for your ideas, and to reduce misunderstanding of your work.
 
MrMagoo said:
Hello

I found the title concerning due to my understanding of jokes from the 90s UK that it was unfair lesbians wouldn’t get AIDS (which is untrue, in particular in instances in South Africa of so called “corrective rape”). Even in 1999 the film “Boys Don't Cry” was released, I think there was some understanding that women and trans men are always at risk of rape by men.
I think we in the UK in recent years there has been a move to remember the role of the lesbians who are nurses and caregivers who rallied round to look after the men dying of AIDS in hospital and the subsequent change of landscape (or not, looking at you RVT) in gay and lesbian culture where gay pubs were geared to men and didn’t even have female toilets, so unwelcome were lesbians in the 70s and 80s. Often the only nurses willing to look after AIDS patients were lesbians.

I mentioned South Africa and it’s worth mentioning that I have a UK view, I don’t have an African or South American view but I know in both places lesbians often had to hide their sexuality and marry men, in any case in more religious societies like these AIDS was rampant in men and women due to lack of contraception and education, meaning lots of women and lesbians had AIDS.

It’s a particularly triggering title, and if it can’t be easily explained in a few words, or even 150, then I think it’s a bad title, and it will put some people off. If some lesbian writers wrote pieces which unintentionally obscured the experience of women with AIDS over 30 years ago in the last century then that’s a shame but honestly all I can see this title doing is offending a lot of people like me, or giving a good laugh to people who aren’t at all like me and I don’t want to converse with. It sounds like you’re punching down on lesbians. It sounds homophobic.

Am I correct in surmising that your titular paper is not about lesbians or AIDS and is about ME/CFS?
Have you thought of just talking about that and not lesbians or AIDS? Or using a better, less complex and more relevant metaphor? Women and their experiences have been erased throughout history, on a much larger scale than this incident you have selected so I am sure you can find an alternative example, unless it is the “click bait” horror of the title which drew you to it?

Personally I’m not a fan of ME/CFS “appropriating” other circumstances, having lived through Hillsborough (although I can see why people make comparisons on an intellectual level, I don’t like it) ME/CFS is bad enough as is without comparing and contrasting it to AIDS or Hillsborough or any other trauma, some of us already have the trauma.

Edited to add more because this is super upsetting
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Sorry that you had that reaction, and indeed the title is provocative by intention, which won’t be everyone’s cup of tea. To clarify, I am a lesbian and the paper is a criticism of the “joke.” The paper is about lesbians who made problematic and oftentimes offensive comparisons between ME and AIDS (whom I critique), as well as lesbians with AIDS and the Lesbian AIDS Project and how they had a more productive understanding of health politics. I love your points about lesbians and caring for gay men with AIDS, which is talked about in the article. To other points about distrust in the humanities in general, I understand that, and I write about/critique that elsewhere in forthcoming work (how ME has been problematically taken up in the humanities and lent to the “social construct” view that fueled dismissal as psychological). I understand the pitfalls of being wordy, and I understand why with limited resources folks might not have capacity to read the whole article. But since these subjects are so complicated, as you all have pointed out, it is hard to summarize in 150 words or on this forum without reading the article.
 
Trish said:
Hi @elimrogers, welcome to the forum. Thank you for being brave enough to join us despite your anxiety about getting negative comments. Having only read the title and abstract, I can't say whether I would find the ideas in the article helpful or not.

I accept that the social science journals require you to write short abstracts which don't provide any clue to the conclusions you draw from your study of the topic, but I find that very disappointing as I feel none the wiser about whether I will want to read the article.

Given all my current demands and limitations I am disinclined to take up your offer of a copy to read, but would be very interested in a brief summary of your argument and conclusion in plain English.

Someone else mentioned Joanne Hunt who writes social science journal articles about ME/CFS which use the language and theoretical constructs of that discipline that I find tend to obscure rather than enlighten. She also writes a blog where she puts her ideas in plain English which I find much more accessible and interesting. Perhaps you might consider doing the same if you want a wider audience for your ideas, and to reduce misunderstanding of your work.
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My best at a summary:

It’s really tricky and probably not a good idea to completely equate experiences between different illnesses! Solidarity between disease groups and between gay men and lesbians is important and can be done without conflating two different things or dismissing one another.
 
elimrogers said:
Sorry that you had that reaction, and indeed the title is provocative by intention, which won’t be everyone’s cup of tea. To clarify, I am a lesbian and the paper is a criticism of the “joke.” The paper is about lesbians who made problematic and oftentimes offensive comparisons between ME and AIDS (whom I critique), as well as lesbians with AIDS and the Lesbian AIDS Project and how they had a more productive understanding of health politics. I love your points about lesbians and caring for gay men with AIDS, which is talked about in the article. To other points about distrust in the humanities in general, I understand that, and I write about/critique that elsewhere in forthcoming work (how ME has been problematically taken up in the humanities and lent to the “social construct” view that fueled dismissal as psychological). I understand the pitfalls of being wordy, and I understand why with limited resources folks might not have capacity to read the whole article. But since these subjects are so complicated, as you all have pointed out, it is hard to summarize in 150 words or on this forum without reading the article.
Click to expand...
Super offensive then, as I suspected.

As usual with ME/CFS this is “everything about us, without us” I hear EDS is being erased, why not write about that from your own experience?
 
elimrogers said:
My best at a summary:

It’s really tricky and probably not a good idea to completely equate experiences between different illnesses! Solidarity between disease groups and between gay men and lesbians is important and can be done without conflating two different things or dismissing one another.
Click to expand...
Shame you chose such a divisive which will prevent that. And wrote an article conflating two different things which shouldn’t be. Meta. Maybe you’re the “lesbian AIDS” writer, well intentioned but erasing us, the ME/CFS community. Very post-post modern.
 
@elimrogers Thank you for joining and offering to share your paper. Unfortunately, it's really hard for me to follow these types of historical/sociological topics, so I'm not sure how much I can personally understand or contribute.

I'm sorry that comments on this forum have been hurtful. But hopefully your joining here can lead to some productive dialogue.
 
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I've read the paper and found it an excellent history of something I was only peripherally aware, and a much broader story than I had assumed. It is very readable and does not have impenetrable lingo. There are a few community terms, but these should be straightforward to the general reader too.

Some quotes that stood out for me —

My goal is to lay out the (in)coherence of “lesbian AIDS” as its own way into lesbian studies’ reckoning with definition and not merely a study “of” chronically ill lesbians. There is no way to do so without understanding “lesbian” as an adjective and not a noun […] Using lesbian archives of chronic illness, I look at what these politically multivalent and contradictory attempts to define lesbian experiences of contested illness—as “equivalents” to AIDS—might theoretically generate.
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Like Walters, I “tread on thin ice” here by even entertaining the term “lesbian AIDS,” but I show that this framework held real currency for disabled and chronically ill lesbians in the backdrop of the AIDS crisis. I open the question: Why does “AIDS for lesbians” or “lesbian AIDS” have legibility as a joke, as a shared but amorphous experience of chronic illness? And what does asking this question do for lesbian studies? Comparisons between lesbians’ chronic illnesses and HIV/AIDS have historical precedent beyond the joke. They occupied a significant space in lesbian writing about illness and disability in the late 1980s into the 1990s—with mixed and often uncomfortable political effects. In this essay I write with the same trepidation about walking the thin ice of contestation, borders, and definitions by mulling over what it means for an illness to “be lesbian,” things that routinely invisibilize lesbians with AIDS. But I wish to hold together both the incoherence of the object “lesbian AIDS” and the discomfort of the joke.
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I stumbled upon these questions because some of the few places in which one can locate anything about these chronic illnesses are in lesbian archives. […] Stigmatized at the time and underrecognized to this day, these illnesses fall through the cracks of official medical archives, as I noticed while I desperately tried to create a history of ME/CFS with some kind of coherence.
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As long COVID activists continue their work of creating and legitimizing a disease category, histories of lesbians with chronic illnesses and their entanglements with AIDS show that this is messy and contingent work, much like the work of defining lesbianism itself. We must not center our politics on separating disease categories or identifying specific pathogens as the end goal. The “border wars” between these diseases create, biologically and politically, single-issue causes. This investment in distinction and biomedical legitimacy has taken up too much oxygen in the room. It can eclipse the fact that health justice will not come without advocating for universal health care, abolishing for-profit insurance, and pushing back against the rapid dismantling of the welfare state.
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I also found the description of wider isolation from community interesting. Not just the stuck-in-bed-can't-leave-home or even can't-do-team-sports aspects with which we are all too familiar, but specific problems affecting those otherwise more mildly affected. Eg being unable to tolerate make up and so losing their particular femme lesbian identity, or unable to go to a club because perfume on others is intolerable. That probably isn't exclusive to lesbians, but an interesting narrative because I assumed that once people were intolerant of smells etc that would be associated with more severity anyway. Perhaps not according to these narratives from the 80s and 90s. (Edit: this concerns multiple chemical sensitivity and environmental intolerance as opposed to ME/CFS.)

The dichotomy of 1984 is illustrated —

The year 1984 was a watershed year for both AIDS and what would come to be known as ME/CFS. Human T-lymphotropic virus III, later renamed human immunodeficiency virus, would be identified as a cause of AIDS. Just a few months later, an outbreak occurred in the Lake Tahoe region (straddling Nevada and California). […] While this disease would soon be dismissed as “yuppie flu,” in this era it was understood as an infectious disease spread through community transmission and casual contact.
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These patients were not gay men but, disproportionately, white bourgeois women—contrasting with the emergent patient profile of HIV/AIDS at the time. And unlike Dr. Robert C. Gallo’s identification of HIV—a single pathogen that leads to a single syndrome—researchers could not locate a single, definitive cause.
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Hutan said:
Thanks for engaging here @elimrogers.

The abstract says

Can you tell us about those lessons and how you came to the conclusions about them?
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I look at key pieces of 90s lesbian writing on chronic illnesses (not just ME, but similarly-dismissed diagnoses (under the psychologizing label), and often these writers had multiple dx's) and show how some of aspects of their writing are eerily similar to arguments that people make about LC, AIDS, and ME. For example, and as I discuss, I have observed people with LC say "I wish I had AIDS instead, because at least there are treatments." Without denying people's own experiences of themselves, I think this can be problematic because it can pit people with AIDS against people with LC, and I think it obscures that HIV-pos people can have LC, too, and it's not exactly like AIDS is "solved." I have also observed sometimes people with LC are a little too combative against PwME, also, as if it's a zero-sum game. At the end of the day, we need more/better biomedical research and resources for all of these diseases.
 
elimrogers said:
it's not exactly like AIDS is "solved."
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No, but it really is preferable to have it than to have ME unless you have drug resistance. I asked a physician who is familiar with both before making this comment, and he strongly concurred.

I don’t like the casting of stating the truth as “problematic.” Patients should not be made to feel like they’re doing something wrong by stating the obvious—that having a horrible disease we know how to manage well is preferable to having a horrible disease with no treatments. The point of a comparison like this is to drive home how serious of a problem it is to have zero treatments for ME and LC, which is a point patients should be allowed to make without having their language policed over the extremely unlikely possibility of it causing any significant tension with HIV+ people.

A lot of injustices in how ME has been handled can be illustrated pretty clearly by comparison to other illnesses. I don’t think patients should be criticized for taking that approach. And I believe people with treatable illnesses generally have the emotional resilience to handle hearing that having an untreatable illness is worse and that we’d really like access to what they have access to.
 
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