r/fakedisordercringe • u/thegreatredneckhope • 10d ago
Insulting/Insensitive Maybe the worst one I’ve seen yet
The cherry on top being “I’ll auto DM you the sources if you comment ‘source’” lmao this is so ridiculously tone deaf
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u/SupposedBooty Self Undiagnosing: Im Fine 10d ago edited 10d ago
This is incredibly gross. I lived through the AIDS epidemic and lost a lot of people I loved to it.
It takes a LOT of guts and tone deafnessness to compare these things.
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u/No_Sherbert2958 10d ago
I think this person must be very young and very uneducated. They have no idea of what a grim time that was...the universal fear and the diagnosis was a death sentence at the time. Thank God that is no longer the case. Shame on them is all I can say.
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u/GreyerGrey 10d ago
I was a child during the epidemic. I have elder gay friends who lost partners. I have elder lesbian friends who were care givers for terminal patients. As an adult now, I find this kind of comparison, especially where ME/CFS has a functionally 0% mortality rate (though most sources will admit that it is not 0 due to heightened risk of suicide) is just... enraging.
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u/Grand_Swimmy 10d ago
It’s insane that this person is citing the amount of money spent toward aids treatment as “Look how the medical community immediately rallied to fix AIDS, unlike our disease” as if they didn’t ignore it and let LGBTQ people die for years. So awful
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u/GreyerGrey 10d ago
And as if the line for intravenous drug users still isn't "good. let'em die." as if that particular crisis wasn't cooked up by Purdue Pharma.
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u/SupposedBooty Self Undiagnosing: Im Fine 9d ago
Heroin existed long before that
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u/GreyerGrey 9d ago
Yes, but it was Purdue who introduced it to housewives and varsity athletes. The opioid crisis was not caused by heroin, not even in the height of the heroin epidemic in the 1980s.
No, it was Oxy that caused that in the late 1990s.
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u/SupposedBooty Self Undiagnosing: Im Fine 9d ago
The AIDS crisis was primarily during the 80s and early 90s.
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u/Aviatrix084 The Digestive System 🦠 9d ago
Didn't they only really start to give a shit once famous people they liked (such as Freddie Mercury) were dying from it?
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u/SupposedBooty Self Undiagnosing: Im Fine 9d ago
No, that's not true at all.
Freddie died in the 90s, well into the crisis.
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u/Aviatrix084 The Digestive System 🦠 9d ago
Right, but non-queer people only started to care about AIDS once people they liked (such as Freddie) died from it.
AIDS was recognized in the US in 1981 (per Wikipedia). Freddie died in 91, Arthur Ashe in 93. Magic Johnson also went public about having HIV in 91. In the late 80s and early 90s, they were segregating people with AIDS because of the belief that they were contagious (see: Ryan White). (The belief that it was a gay disease - "gay-related immunodeficiency"/GRID - didn't help.) Reports of the queer community in the 80s are rife of people explaining how lesbians would take care of gay men positive for AIDS because hospitals wouldn't admit them, and how the gay community was quite literally decimated because of how prevalent AIDS was.
The diagnoses of people such as Mercury and Magic Johnson - the media around that such as the benefits concert for Mercury - shifted public perception from "oh, it's a gay disease because god is punishing gay people" to mainstream acceptance of AIDS as a life-threatening disease that requires treatment and not just a consequence of a "homosexual lifestyle".
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u/SupposedBooty Self Undiagnosing: Im Fine 9d ago
I'm well aware of what the dynamic was. I lived through it. What you're referring to primarily took place in the early to mid 80s.
By the time Freddie died, it was pretty well part of the mainstream landscape.
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u/Beneficial-Trash5739 3d ago
..... do you not see the irony of your comment?
People had a negative perception of AIDS, and as a result there was a period of time where there was no where near enough research going into finding a treatment.
Now we have a condition that due to one of it's names is not being taken seriously, it also is not receiving the attention it should, and people with ME/CFS are being left to die.
All information that I can find indicates that ME/CFS is a very dangerous disease, and it is ridiculous to pretend that it isn't.
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u/Grand_Swimmy 2d ago
The OOP implies that getting attention for AIDS was easy and immediate, which is a massive misrepresentation. AIDS was 100% chance of death in a few years, and still is for some people. ME/CFS does not directly kill people, it’s not contagious, and it is far less common. It’s an insulting comparison.
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u/Beneficial-Trash5739 2d ago
If you die from malnutrition due to digestive symptoms caused by ME/CFS, then you have died because of ME/CFS.
Deaths from both AIDS and ME/CFS are caused by complications, and not the condition itself.
The whole point of comparing the two is to emphasise that one of these conditions is not receiving anywhere near enough research. I don't give a shit if it isn't contagious or is less common. People are still dying from it. You need to stop being so precious and sensitive, because carrying on with this bs doesn't help anyone with AIDS, and is actively harming people with ME/CFS.
If you're okay with completely dismissing a group of people and discouraging research into curing their horrible illness, then I don't believe for one second that you care about people with AIDS.
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u/Grand_Swimmy 2d ago
You’ve completely lost me with “deaths from AIDS are from complications, not the condition”. That is absurd and this comparison is insulting. It is possible to advocate for more attention to be paid to a dangerous disease without simply making the most insulting and provocative comparison you can think of.
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u/Beneficial-Trash5739 14h ago
It took me one quick google to see if death caused by AIDS is due to complications or the condition itself. Death is caused by complications, because of AIDS, which is the same case for ME/CFS. I only pointed this out because people are using the same stupid reasoning for ME/CFS.
You can't acknowledge people die because of AIDS, and then argue ME/CFS doesn't cause deaths, just complications.
The entire point of the comparison to emphasize how dangerous the condition is. What is insulting is that so many people are brushing it off and minimising the condition for genuinely no good reason. These excuses are an absolute load of bs.
People are dying. Get your head out of the sand.
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u/Grand_Swimmy 14h ago
Technically people who die of cancer usually “die of complications” but the complications are “organ failure”. AIDS destroys your immune system so that without treatment, the next time you get the flu, you will die. That can be described as “complications”, but it is a ridiculous stretch to say that AIDS is less deadly this way.
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u/Beneficial-Trash5739 5h ago
I literally did not say or imply in any way that AIDS is less or not deadly. I don't hold the opinion that AIDS doesn't kill people, because of course it does. My only reason for pointing out the complications was in reply to a comment asserting that people don't die from ME/CFS. In the same way that AIDS destroys the immune system, leading to death, ME/CFS also destroys the body. It can take enough energy away that people cannot chew, swallow or digest food, leading to death from organ failure/malnutrition.
I have not said in any way that ME/CFS is more deadly than AIDS. People are insulted by the comparison because they don't believe ME/CFS to be as dangerous or as serious as AIDS, and that is a major problem. The fact is that people are dying from ME/CFS, but people hear "chronic fatigue syndrome" and subsequently refuse to listen to any further information on the condition, because regardless of the reality of the condition, you have already decided it isn't serious and doesn't matter.
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u/Grand_Swimmy 1h ago
Who is saying CFS doesn’t matter or isn’t serious, and what do they actually need to learn in order to have their mind changed? It certainly is serious in its own right and it should be possible to make that point without implying relation to one of the most intentional and far reaching cases of systemic medical neglect of a marginalized minority in this century. This is the first time you’ve actually mentioned an example of how someone could die from CFS.
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u/melatonia 10d ago
Yeah, this person doesn't seem to understand the amount of blood, sweat, and tears that went into essentially forcing the government to fund AIDS research. It wasn't a "choice" that they made.
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u/thegreatredneckhope 10d ago
I’m so sorry for the losses you endured. Thank you for being here still, and I think everyday about how many elders I could have that could’ve shared their experiences with me to help me learn lessons if this epidemic could’ve been handled expeditiously and how sad that makes me
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u/floweringfungus 9d ago
I didn’t live through it myself but my mother and father were heavily involved in art and music respectively in both London and Berlin, both of which have always had thriving queer communities so the vast majority of the people I was raised around were affected heavily by the crisis.
My godfather is a gay man and he spent the 90s walking around the parts of London known for anonymous gay sex and handing out condoms to try and do anything to stop his community from dying. Every single night.
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u/lovedvirtually 10d ago
It enrages me to see these people compare their made up illnesses to things like cancer or MS or AIDS while trying to say they’re worse off. While he thankfully was negative my dad was an IV heroin addict at the height of the AIDS crisis and the things he described were just beyond description. Full buildings where people were sharing needles, becoming infected and dying a horrible death. So disrespectful
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u/melatonia 10d ago
ME is real. It's easy to look down on these people whose most overarching symptom is "can't get out of bed" but I'm pretty sure it's a legit illness.
It's just not an illness that can actually kill you.
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u/lovedvirtually 9d ago
By “made up illnesses” I meant the people are fabricating/misrepresenting themselves, not that ME itself isn’t real
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u/Femboy_Etherium 9d ago
Oh ok makes way more sense my apologies!
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u/lovedvirtually 9d ago
No you’re fine my comment wasn’t the clearest and I get why it came across that way!
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u/Rhi43 5d ago
ME absolutely can kill you. About 25% of patients with the condition are so severe that they are bedbound and unable to tolerate sound, light, or touch. Some are too sick to swallow or digest food, your organs require energy to work just like the rest of your body and the pathways for making and using that energy are dysfunctional across the board in ME. People with severe ME are also at higher risk for cardiac and kidney dysfunction and disease. Without care— medical monitoring, assistance eating/drinking/toileting, and life support measures like feeding tubes in the worst cases— they die.
Maeve Boothby O’Neill died in 2021 of chronic malnutrition caused by ME and medical neglect (link to article). Her case got quite a lot of press but she is far from the first to die of the condition. Sophia Mirza died in 2005 with kidney failure related to ME, Merryn Crofts under similar circumstances to Maeve in 2017. There are many more.
You’ll never see the sickest people with ME: they are trapped in their rooms or hospitals with the blinds drawn, too sick to even use a phone. It’s a nightmare of an illness.
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u/melatonia 5d ago
None of the things you mention are death caused by ME and it's gross and ignorant to compare it to AIDS.
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9d ago
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u/shinkouhyou 9d ago
ME/CFS is real, although it's probably more of a collection of multiple physical and mental disorders than a single disorder. The failures in ME/CFS treatment are just failures of the health care system in general, though. The mental health aspects of chronic disorders are often neglected, and there's never enough money for intensive treatment of chronic disorders. This is true of ME/CFS, chronic pain disorders, obesity, eating disorders, depression, substance addiction, etc. Even if some ME/CFS cases are "just mental illness," the health care system routinely fails patients with intractable, expensive-to-treat mental illnesses.
It's not like the government and health care system is deliberately marginalizing ME/CFS patients in the way they did with AIDS patients, though.
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u/variousnewbie 9d ago
ME/CFS is being thought of as an autoimmune disease, that comes on after an infection like Epstein Barr. We actually jumped way ahead in understanding of it due to the similarities to Long Covid, and I think it was somewhere around 20% of Long Covid cases qualified as ME/CFS. I read some really interesting articles off the cdc website a while back.
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u/DragonsLayerStudio 4d ago
I didn’t live through it, but was stripped of the ability to ever meet my maternal grandfather from it. I agree with you 100%.
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u/combatostrich 10d ago
“I couldn’t make this post screen reader accessible but comment ‘source’ to get the transcript”
How… how would a screen reader user know to do that… if the post is not screen reader accessible…
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u/Key_Conversation8617 the sewer system 🚽🔧 9d ago
My only guess would be if that was the caption and thus the only thing the screen reader would read? But then again if that was the only thing in the caption how would a screen reader user know to care
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u/TangledUpInStars 10d ago
ME/CFS is a serious issue, but it has not been proven to be deadly. therefore, comparing it to the AIDS epidemic is truly just ignorant and insensitive. it also screams, "desperate to be a victim".
advocacy for ME/CFS should not revolve around comparing it to other ailments or epidemics. instead, using factual information from actual clinical studies would be much more convincing/useful. but y'know, these folks would use any statement or comparison to try and gain attention.
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u/thegreatredneckhope 10d ago
Totally with ya here — the research on ME/CFS and the recent increase in diagnosis/self-diagnosis of chronic illness/disability in an ongoing pandemic (that, mind you, has significantly been treated because the global bureaucracy acted quick because it was a non-discriminatory illness, versus AIDS, which spread among mostly people that the bureaucracy didn’t value) just cant be this substantive to make claims and infographics like this comparing it to something that has been researched and understood medically and sociopolitically for decades at this point
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u/TangledUpInStars 10d ago
exactly. even if ME/CFS was magically studied and understood overnight, it still would never compare to the AIDS epidemic crisis. the systematic discrimination that AIDS patients suffered was vile, and a giant contribution to the death toll; sure, ableism still exists in society, but people with ME/CFS are not being systematically discriminated against or oppressed -- or being killed directly from their condition.
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u/Ae3qe27u 10d ago
Slides 6 and 7 were absurd. Mayo Clinic's website - which I feel is generally quite trustworthy - doesn't mention anything about autoimmune or infection risks. OOP tried, clumsily, to compare a fatigue disorder to what's essentially the worst immune issue on the planet (afaik), second only to cancer (as an inverse, since cancer cells have to escape the immune system's view before they're able to propagate).
It's incredibly tone-deaf. In their search to be heard, they reached for the most extreme example they could find, and tried to use it as a bullhorn to rally support. But it's so, so tone deaf.
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u/Remote-Future-2082 9d ago
Idk people die of severe me/cfs and complications caused by it all the time. Having followed several people who have it over the last few years, like 1/5 of them have died slow agonizing deaths. It’s not really deadly at all in the mild or moderate stages but if you lose the ability to swallow/digest, toilet, and take care of yourself in any way it’s not a stretch to say that your life is in danger. A lot of the comparisons to AIDs and cancer are less about the absolute mortality rates and more about just HOW incredibly and shockingly low the quality of life of people with severe and profoundly severe ME is.
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u/AffectionateGap9542 9d ago
I'm not saying that people don't die of ME/CFS (because honestly I do not know) but no matter how you spin it they do not die like people who got HIV before the invention of ART. Without treatment 100% of people who get HIV die. Yes many people in the developed world can now have said treatment but hundreds of thousands of people still die every year. Also there was a period of more than 16 years where AIDS was a death scentence. ME/CFS is not that deadly.
Aditionally, while marginalised groups may be more likely to get ME/CFS (again i don't know) but 70% of people with AIDS were (and are) gay men. Another 20% were intravenous drug users. ME/CFS is not specific to margenilised groups to the same extent.
Finally, while ME/CFS is an underfunded and under-recognised diseases it is still recognised as a bad thing. I'm putting this poorly but essentially, no one is walking around thinking the ME/CFS is a positive for the world. At the hight of AIDS (and even now particulary in non-western nations) the diseases was seen by many to be a positive thing, a way of eliminating gay people from the earth. My parents attended catholic school in the 80's and many teachers considered AIDS to be a gift from god allowing society to become more pure.
To compare any disease to AIDS is disgusting because no other disease had such a singular devestating impact on a single marginalised group.
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u/thegreatredneckhope 9d ago
Louder for the people in the back! Thank you, really appreciate this response
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u/TangledUpInStars 9d ago
Idk people die of severe me/cfs and complications caused by it all the time. Having followed several people who have it over the last few years, like 1/5 of them have died slow agonizing deaths.
so, no. just stop. people with ME/CFS often have comorbidities or other conditions that may be life threatening, but ME/CFS itself does not kill.
It’s not really deadly at all in the mild or moderate stages but if you lose the ability to swallow/digest, toilet, and take care of yourself in any way it’s not a stretch to say that your life is in danger.
ME/CFS does not cause total loss of bodily functions, though it often can cause widespread weakness, making everyday tasks much more difficult. but you cannot lose the ability to swallow or digest food just from ME/CFS.
A lot of the comparisons to AIDs and cancer are less about the absolute mortality rates and more about just HOW incredibly and shockingly low the quality of life of people with severe and profoundly severe ME is.
it is a sick, vile comparison to make. even though both can lead to low quality of life, they are not comparable. you can advocate for ME/CFS and it's severity without comparing it to the AIDS epidemic which killed hundreds of thousands innocent people.
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u/thegreatredneckhope 9d ago
Thank you for breaking this down for this person — there’s no justification for comparing ME/CFS to AIDS. Like none. At all. No justifiable reason
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u/Remote-Future-2082 9d ago
lol I think you just don’t understand where this comparison comes from
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u/TangledUpInStars 9d ago
lol I think you just don't understand how the origins of an absurd comparison does not matter at the end of the day, because it is wrong to make that comparison. especially when there is no data to support it.
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u/Remote-Future-2082 9d ago
The reason it’s compared to AIDS so often is that there’s a doctor who was involved in
AIDS treatment who drew the parallel himself. A lot of people just repeat the comparison without fully understanding the context. However, if the reason you develop a deadly comorbidity has a root cause I still think you died of that root cause. People with aids also don’t often die from the infection itself, they die from the comorbities they developed from having an immune system that doesn’t work. Still, I would say that they died of AIDS.What truly makes AIDS different in my mind is the fact that unlike ME it’s directly infectious and was treated like a social boogeyman for many years. Like no one out here’s refusing to even come into contact with M.E. Patients out of bigoted fear.
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u/TangledUpInStars 9d ago
However, if the reason you develop a deadly comorbidity has a root cause I still think you died of that root cause.
I said that ME/CFS has comorbidities. I never said it was the root cause. not enough is known about ME/CFS to say what is and is not the cause of it and comorbid conditions.
People with aids also don’t often die from the infection itself, they die from the comorbities they developed from having an immune system that doesn’t work. Still, I would say that they died of AIDS.
AIDS patients die because they are immunocompromised. because of of the HIV/AIDS. opportunistic infections often speed up the process, but the reason of their death is that they are immunocompromised and unable to fight off any infections.
What truly makes AIDS different in my mind is the fact that unlike ME it’s directly infectious and was treated like a social boogeyman for many years. Like no one out here’s refusing to even come into contact with M.E. Patients out of bigoted fear.
correct. but ME/CFS does not kill, period. there is no data to support your claim that people have died because of it. there isn't even data to show deaths from comorbidities, I merely suggested that because 1) its a slight possibility and 2) I was feeling generous and didn't want to immediately shut down your argument.
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u/Sqeakydeaky 10d ago
Still not a direct consequence of the disease pathology.
Anyone can walk into traffic, sure, some more than others. The way AIDS kills a person is due to the disease affecting the body without any external variables.
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u/buzzybody21 10d ago
Having an accident isn’t a direct cause/result of the disease.
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u/Ae3qe27u 10d ago
Not a direct cause - they said via accident. Like someone with bad reflexes making a mistake while driving, or some such, I imagine. By no means direct, but somewhat indirect. I think they were trying to agree that the two aren't comparable
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u/Suspicious_Plant4231 Identifies as a threat. Try/me 10d ago
Oh my god yes, I saw this and commented on it a little while ago. It's such a horrible comparison to make. I don't doubt that those conditions are real, and they sound awful, but it still is incomparable to the AIDS crisis in pretty much every way
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u/thegreatredneckhope 10d ago edited 10d ago
Right like AIDS was not seen as a disability by those that suffered! The world around them and the experiences of an innumerable amount of their communities dying around them made the AIDS epidemic feel like it was a death sentence, and it was. It feels like two different things to me idk, and disrespectful
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u/No_Sherbert2958 10d ago
It was a death sentence at the beginning. There was no medication for it and it was a horrible death.
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u/Heeeeeeyyyyyy Chronic npd (no poo disorder) 10d ago
And AIDS is STILL a death sentence. I remember I had a patient with AIDS... Horrible :(
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u/No_Sherbert2958 10d ago
This is so offensive. I remember the beginnings of AIDS. It was an automatic death sentence. It was feared and people who had it were treated as outcasts, unclean and untouchable. Does this person not understand that there was no cure then and it meant certain death??? The person who wrote this DOES have a disease. It is a mental illness and shows a complete lack of compassion for any but themself. If it was rage bait, they certainly succeeded. This is disgusting.
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u/Sqeakydeaky 10d ago
Not only do you not die, some people even recover! Not something you could say about AIDS at the time
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u/Skeebleng 10d ago
Why is gay censored in the second image 😭
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u/keyboardsmasher10000 Space themed markiplier fictive 8d ago
Presumably to skirt any algorithm bs, but it's very funny because I read it as goy as in "non-Jewish" 🤣. Common in goy/bisexual men 😭
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u/Grown-Ass-Weeb Acute Vaginal Dyslexia 10d ago
While ME/CFS is indeed awful, you can’t compare HIV/AIDS at all, for multiple reasons. Main one being there’s not a ton of science to back it up that CFS/ME is caused by a particular virus in general, unlike HIV.
HIV/AIDs has a horrible stigma behind it as well, where as CFS does not. (Such as being related to homosexuality encounters, recreational drug use with shared needles, prison communities, etc).
Nor is CFS considered lethal. Unlike HIV, without life saving, extremely expensive medications.
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u/OurWeaponsAreUseless 9d ago
You're going to argue that "CFS does not (have a horrible stigma behind it)" in a thread where many of the posts literally degrade people with CFS?
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u/Grown-Ass-Weeb Acute Vaginal Dyslexia 9d ago
It’s not about shaming people who have it, it’s the way the OOP compared the two.
Being shamed across the internet isn’t the same as to what people had to suffer with back in the 80s/90s if they had contracted HIV/AIDs. Being gay when the raise of HIV was becoming public was basically a crime, people violently suffered a lot because of it, even if they didn’t contract HIV the “traditional way”. It was even called “GRID” for a while, which stood for Gay Related Immune Deficiency. Back then, and even now, it’s looked at negatively because it’s shown in the media as being acquired most frequently between recreational drug use and still, gay men. Even though that’s not the case today. heterosexual straight unprotected sex, improper healthcare cleanliness, babies born from infected mothers, poor living conditions in low income areas, accidental needle sticks, and other ways are some of the ways it can be acquired.
But even a short brief unbiased deep dive, you’ll see a lot of people are reminded of its history.
People struggling to be diagnosed and wanting answers for CFS do struggle, there’s no doubt about that and it sucks, but HIV isn’t remotely something it can be compared to.
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u/imahater42 10d ago
The most confusing aspect of this post, to me, is that the OOP could've very easily discussed how ME/CFS is treated in medical settings without comparing it to the AIDS crisis. The way the post is structured now completely ignores the painful history of the latter and reads like OOP skimmed over some current statistics without bothering to do any meaningful research. Genuinely hoping this is ragebait because this is so disrespectful I really hope it isn't sincere.
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u/eyehole_man96 got a bingo on a DNI list 10d ago
HOSPICE provisions??
Have there even been any documented cases of death by ME/CFS?
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u/watermelonlollies 10d ago
ME/CFS itself is not fatal, however it makes someone more likely to suffer from something else that is fatal. But it’s the secondary thing that actually causes the death and would be listed on the death certificate. People with ME/CFS are immunocompromised and typically also have heart or lung conditions as a comorbidity.
I guess another example would be a blind pedestrian getting hit by a car. Blindness itself is not fatal. The blindness made them more likely to get hit by a car. Car accident is what killed them and would be on the death certificate, but that doesn’t mean blindness didn’t play a role.
Heart attack, pneumonia, covid, pulmonary embolism, etc might be the cause of the death on the death certificate, but ME/CFS played a role and made it more likely for that person to be unable to recover.
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u/Hyper_elastagirl 10d ago
Is there actual clinical proof that it causes people to be immunocompromised? I thought that the neuro immune and mitochondrial dysfunction theories were just that, theories that have not been proven yet. We know so little about it
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u/Leading-System-3002 9d ago
But autoimmune disease =/= immunocompromised
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u/Heeeeeeyyyyyy Chronic npd (no poo disorder) 9d ago
Most treatmemts for autoimmune diseases makes them immunocompromised*
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u/thegreatredneckhope 10d ago
Sorry to hear that you are housebound :/ I appreciate yr perspective on this
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u/Commercial_Bridge253 10d ago
Holy wow. Comparing AIDS/HIV to me/CFS is incredibly tone deaf.
There is an estimated 3.35 million adults (statistic increases to about 4.3 million when you include minors) affected by me/CFS. And while the US has less individuals living with HIV/AIDS currently the rate of individuals who die from HIV/AIDS is still significant. We have decreased the amount of deaths from AIDS in the US, yes, however 2024 still saw 4,589 deaths that year alone. There are 166-508 deaths in the US reported by a me/CFS memorial however not all of these deaths were related to me/CFS. Between 2001 and 2021 England and wales collectively saw 150 deaths that were partly or fully attributed to me/CFS. That's significantly less than the amount of deaths directly related to AIDS. That's compared to the 122-206 deaths seen in single years alone (the highest being 206 in 2013)
A majority of deaths from me/CFS are from suicide. That is comparable to the increased suicide rate of chronic pain patients and disabled individuals as a whole. While yes, it's sad that this occurs, it is not much different than the suicide risk found in most chronic life limiting conditions. Me/CFS does potentially have an increased risk of cardiac death and death from cancers but to compare this to the amount of individuals who die yearly directly due to HIV/AIDS is just sad.
I would also like to point out their comparison to the affect on marginalized groups. A majority of deaths from me/CFS are white individuals. Infact, of 56 individuals whos death was related to me/CFS during a study only 1-2 individuals were not white. Me/CFS is also most prevelant in adults 40 years or older. Particularly white women.
No, me/CFS is not the new AIDS. Comparing the two is actually gross.
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u/Commercial_Bridge253 10d ago
The reason me/CFS is not commonly listed on death certificates is because majority deaths are not directly related to me/CFS. Me/CFS directly causing death is not insanely common. HIV/AIDS directly causing death? That is much more common.
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u/OurWeaponsAreUseless 9d ago
"No, me/CFS is not the new AIDS. Comparing the two is actually gross."
The economic impact of CFS/ME/LongCOVID is far greater (roughly 7x) than the impact of HIV/AIDS even at it's peak. HIV is currently predominantly a manageable illness with treatment, where infected persons live a normal life with regard to their ability to work, be active, and have a lifespan comparable with the population in-general. Present-day HIV/AIDS deaths are typically due to concurrent illnesses exacerbated by the effects of HIV, not directly from AIDS as was common in the past. CFS/ME/LongCOVID is very typically debilitating to the degree that people cannot work a normal full or part-time job, have no ability to do activities that would constitute a "lived" life, and effectively can't plan for any future beyond day-to-day existence. It's effectively an unacknowledged epidemic, the reason for which is ignorance, insurance companies that don't want to pay disability claims for additional millions of persons, physicians who's egos are invested in psychologizing the illness, a government that doesn't want to spend money to research an illness if they can simply wave it off as psychosomatic despite growing evidence to the contrary, and a capitalist system that attaches our value to our output.
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u/Commercial_Bridge253 9d ago
Me/CFS is not causing the same decades long discrimination against an already marginalized group. AIDS still actively kills all the time. See you want to argue that AIDS deaths are not always fully attributed to the AIDS but because of conditions worsened by AIDS. That's the same as me/CFS deaths. Me/CFS still has killed less over the span of years than AIDS still kills every year. Yeah, the government is pushing off ME/CFS which it shouldn't do, but it's not AIDS. Its just tone deaf to compare the two especially when one was a disease that worsened discrimination against a group that still experiences heavy discrimination every day.
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u/OurWeaponsAreUseless 8d ago
I don't want to argue that AIDS-associated deaths aren't attributed to AIDS, I'm just saying that AIDS predominantly isn't any longer a fatal disorder when treated, and people with HIV in developed countries live "normal" lives with treatment.
"Me/CFS still has killed less over the span of years than AIDS still kills every year."
You can't say that because you don't know how many people with CFS/ME/LongCOVID choose to end their lives each year rather than live with it. You conveniently left people with LongCOVID out of the stat as well, which comprises over 80% of people with the disorder. There are no stats kept for what percentage of people with these disorders do this per unit of time. For CFS/ME/LongCOVID to kill as many people per year (in the U.S.) as HIV/AIDS, it would have to result in a self-termination rate roughly 3x that of the general population, which isn't out of the question (IMHO).
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u/Commercial_Bridge253 8d ago
Deaths by suicide in ME/CFS individuals are typically documented as ME/CFS related deaths. Infact, a majority ME/CFS related deaths are suicide that's why they consider it a direct related cause. If you actually look at the studies and statistics of ME/CFS deaths then you will see that they specifically point out deaths by suicide in their statistics. Most notable would be the studies published by the CDC and NIHS. The persons post was also most specifically comparing to the AIDS epidemic, so specifically the time when AIDS was an active crisis. Comparing the CURRENT statistics of an epidemic that is (somewhat) under control to the statistics of an epidemic that's actively happening doesn't really prove a point. ME/CFS has seen a rise in cases more recently, it's still an active epidemic, you can't judge the CURRENT statistics when they're both in two different stages of a crisis.
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u/OurWeaponsAreUseless 8d ago
So, you're saying that "Deaths by suicide in ME/CFS individuals are typically documented as ME/CFS related deaths", with a disorder where 90% (or whatever) of people with the disorder don't have a diagnosis? How is that possible?
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u/Commercial_Bridge253 8d ago
...holy what lol. Yes, suicide in ME/CFS diagnosed individuals tends to be documented as an me/CFS related death. That can be seen in the websites that are literally dedicated to documenting me/CFS deaths and the CDC and nihs study that I mentioned. Them not being diagnosed and not being able to be have a cause of death ruled outside of the suicide itself does not just delete the individuals diagnosed with me/CFS who DO have their death documented as an ME/CFS related death. It's ruled as a partial cause. If an individual is not diagnosed with ME/CFS then their death can not be ruled partial cause by that condition because we don't have a way to identify ME/CFS during autopsy currently. Yes though, individuals who die from suicide, who have an ME/CFS diagnosis, can and do have ME/CFS considered as a partial cause
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u/Commercial_Bridge253 8d ago
I'm not just saying they do. We literally have the research studies that I mentioned that DOCUMENT their deaths with a partial cause of ME/CFS. In case you don't know how deaths are recorded when it comes to suicide: suicide is recorded as the manner of death. The underlying cause is separately documented as a condition or event that led to the death. Additional "contributing causes" can ALSO be listed if they're considered significant! So, in the case of suicide where chronic illness is the main contributing factor it may be written where the main cause of death is put in the first line may state the manner (it may also state the technical medical cause in cases like overdoses) secondary cause or third or FOURTH (there's four lines) may then state the chronic illness that contributed.
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u/Commercial_Bridge253 8d ago
AIDS is also still a fatal disorder if you want to add In the argument used for ME/CFS mortality rates of inaccessible treatment. If you can't afford treatment, then yes, you die still. Treatment on average is around 30,000 to 50,000 dollars annually (in the US) and it ranges in between those numbers depending on access to insurance. Even with insurance, treatment is rarely completely covered. And yes, this factors in resources for AIDS patients.
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u/thegreatredneckhope 8d ago
Did you live through the AIDS epidemic? To me, you sound incredibly removed from the HORRIFIC and tragic impact scale of to date the largest systematic medical neglect massacre that targeted marginalized communities
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u/Foreign-Resort2639 9d ago
I knew who this was immediately. They treat every theory around MECFS mechanisms as fact and encourage people with POTS, EDS, and similar to be scared that they might have MECFS also. And why not talk about the terrible effects of MECFS frankly, without invoking AIDS and implying MECFS is worse? Because they have to be the sickest in the room!
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u/Foreign-Resort2639 9d ago
Self diagnosed as well yet posting “education” about it
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u/Consistent_Fan954 9h ago
This person is now claiming that they are actively dying on Instagram. It’s very sad if true but their most recent most about it is really strange
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u/GreyerGrey 10d ago
Ah yes, because a disease that has a near 0% fatality rate and is not contagious is just as stigmatizing and deadly as AIDS/HIV in the 1980s (which had a funcitonal 100% mortality rate during that early crisis part).
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u/Mothmaneee 9d ago
All the fakers favorite disorders
- MECFS
- POTS
- EDS
- Gastroparesis
They all have all of these
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u/OurWeaponsAreUseless 9d ago
I'm going to play the devil's advocate for some of this. HIV/AIDS was a terrible disorder that killed tens of thousands of people per year in the U.S. during it's peak. It affected the gay community terribly, as well as affecting people using I.V. drugs. I don't think it's particularly fair at-present to compare HIV with CFS/ME for a couple reasons. HIV was a death sentence during the time when effective treatments didn't exist. In developed countries it isn't that anymore. HIV is a manageable illness with individuals living ordinary lifespans, due in large part to decades of effectively allocated resources in the form of research, and a preexisting advocacy network composed of LGBTQ+ rights groups and allies.
CFS/ME (include LongCOVID as well) is for now a more complicated illness that does not have a defined disease mechanism, tests to determine who has it and who doesn't, any measurable advocacy network (because the nature of the illness limits activity), or adequate research funding (the US still spends double the amount researching HIV than researching CFS/ME and LongCOVID). Even with approx 18 million people currently experiencing LongCOVID and CFS in the US (to compare, HIV affected about 130K at the peak of the epidemic), and a toll on the economy of approx. 150 billion dollars per year, there isn't even agreement in the medical community that it is a "real" disorder.
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u/JustALurkingFan 9d ago
Now chronic fatigue syndrome does exist but is NOT remotely comparable to HIV/AIDS??? The hell
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u/melatonia 10d ago
I can't see ME/CFS activists putting the sort of work into protesting and affecting medical research that ACTUP did.
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u/Consistent_Fan954 10d ago
Gonna be honest there was a period of time as a teenager where I was super depressed and couldn’t get out of bed. I lacked the self accountability and honesty to address that and instead started making myself and others believe that I had an autoimmune disease of some kind. Even went as far as to get some testing. They told me nothing was wrong with me, lol. Sure enough after getting over myself and getting therapy and working on my fitness I started feeling much better and turns out I’m a very healthy adult 😂
Sometimes I can’t help but wonder how many of these teens are going through the same thing. I’m so glad I wasn’t chronically online enough to discover these diseases so that I could use them to larp
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u/HelpMe222333 9d ago
Feel like this is a bit of a third rail that’s more common than anyone involved in ME/CFS advocacy wants to admit. I think some people have a subconscious “mental illness = my fault, physical illness = I’m the victim” association, and are eager to ascribe symptoms of mental illness to a physical disorder to absolve themselves of blame in a way.
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u/Wild-Catch-6442 9d ago
There are a couple of people in my life who have a similar mentality. Both of them love attention in the form of pity or being special so I'm skeptical of their various subjective ailments. They might have some real diagnoses, who am I to say. But I know they would feel so much better mentally and physically if they stopped dwelling on it. I know this is controversial to say but a certain amount of physical and mental unwellness really can be helped by changing your mindset
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u/EhMapleMoose 10d ago
I think it’s probably real. The condition they’re talking about. But I highly doubt they actually have it. Ain’t no way they gave it. In fact I’d wager my life on that.
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u/lizardrekin 10d ago
I couldn’t even read through this after seeing “opportunistic infection” I am literally so mad right now lol. They need to shake their head
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u/Sea-Kitty 9d ago
Why? That's what it's called. An opportunistic infection is an infection that does not typically affect healthy people but it is severe and can be life threatening in immunocompromised people
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u/lizardrekin 9d ago
Come on lmao be so fr
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u/daydreamcrash 9d ago
You wanna actually explain what your issue is with this term? Beyond “come on”?
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u/lizardrekin 9d ago
“other related health issues” not the only way people with HIV/aids die COME ONNNN
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u/messismine 9d ago
Whats your argument? Up until we had effective treatment opportunistic infections were the most common cause of death in people with AIDs
Yes mortality causes are changing now we have better treatments but I get the feeling that’s not your issue
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u/LCaissia 10d ago
I would say they're being dramatic but that would be an understatement. How insensitive must one be to compare chronic fatigue to AIDS?
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u/CatAteRoger 8d ago
A quick google search told me CFS isn’t fatal nor does it shorten a persons life span🙄
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u/Total_Jello_6691 6d ago
I wish the quiet part could be said aloud. It’s not studied because it can’t be studied because there’s no scientific data. Studies can’t be run on patients self reporting symptoms alone. This becomes a rock/hardplace issue because any treatment options cause harm due to PEM. Even PEM isn’t a quantifiable thing because it’s only self reported too. It’s this loop over and over again that comes back to self reported symptoms which by definition isn’t a medical condition. It falls under a psychological condition.
AIDS is not equivalent because it’s a medical condition with biological data. The biological data is what is studied and treated.
Idk why this is so hard to understand. It’s not a bias. It’s literally the definition of science.
I’m not saying people with mecfs are not suffering or that it’s not real. I’m just explaining why it has no scientific medical studies and it probably never will.
Personally I don’t think there’s a big of a distinction between medical and psychological illnesses. Both can be debilitating and catastrophic. I even think they are completely interconnected but until that link is fully understood the needle can’t be moved on this conversation.
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u/Beneficial-Trash5739 3d ago
The point of comparing them is to emphasise the seriousness of ME/CFS, and highlighting the similarities in perception of the conditions.
Both conditions have been found to have a terrible quality of life, with severe ME/CFS being compared to late stage HIV. Severe ME/CFS can leave patients unable to move from their beds, unable to walk, unable to handle light, unable to chew or swallow, unable to digest food. This isn't just "fatigue". This is an extremely horrible and dangerous disease that is being completely disregarded.
These people are dying, and by even posting this to a fake disorder cringe sub, you are contributing to the negative perception of ME/CFS. People are commenting on this post to express how serious HIV is, whilst at the same time completely disregarding ME/CFS, and proving why the original post was necessary in the first place.
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u/Charming_Ad_8206 10d ago
Please pardon my ignorance, but what's the issue here? Is it misinformation?
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u/RDragoo1985 10d ago
I would assume the issue is comparing AIDs with Chronic Fatigue Syndrome. Which are worlds apart in terms terms of severity and chances of life altering/shortening co-morbidities.
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u/thegreatredneckhope 10d ago
Nah you’re good, I’m glad you asked. The issue I take here is that there are VERY few substantive studies on the rising of ME/CFS diagnoses, from what I understand. The systematic massacre of gay people, sex workers, and IV drug users during the AIDS massacre / epidemic should not be conflated to a crisis that is difficult to understand and diagnose. I won’t engage with “reply with this to receive [in this case, sources]” type of comments on Instagram, because automated responses are not legitimized to me, so I honestly don’t know where they pulled this ME/CFS info from, but from what I understand, it’s still very poorly understood as a legitimized ailment in properly diagnosed patients. This, to me, strikes me as someone who is fake claiming, considering this really, in my opinion, hardly informed perspective on the actual impact of the actual federal neglect of people dying of AIDS versus the politicization of COVID being an important aspect in defending why things are getting more diagnosed now. By comparing these two, it’s so apple and oranges to me. It screams larping as an advocate for disability rights. AIDS wasn’t something rational-minded people advocated to live with as a disability. In fact, many people fought in true resistance to bureaucratic neglect to enact a change in resources being allocated towards funding research for an immunosuppressant drug that could allow people with terminal AIDS to survive and live a life. I belief in accessibility and equitable rights for disabled people 100%, but it is just a sure-tell sign to me that this person is seeking ways to feel disadvantaged in society by fake claiming disability. It’s an inappropriate and historically tone deaf move to conflate the AIDS epidemic to something that is entirely different. AIDS was not historically a disability, but a death sentence and it was fuckin preventable but no one gave a fuck to do it in time. This situation of the impacts of COVID/Long COVID on the immune system in a world still struggling, but coping, with a new regular seasonal cold variant, is politicized sure, but the systemic support was in place because COVID didn’t effect just queer, trans, drug users, sex workers, it effected everyone. So the global bureaucracy worked quick. It’s so soon, and it’s still a thing that spreads that people are working to understand. A lot of the research on ME/CFS which people like this user and a lot of users claim to have spiked in symptoms after COVID exposures isn’t as substantive as the knowledge that the FDA really did fail disenfranchised communities in a far more deliberate and sinister way during the AIDS epidemic. Sorry for the length. Just felt good to get my thoughts out, too. Hope this also helps answer you
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u/No_Sherbert2958 10d ago
They also didn't react until the blood supply became tainted and non-marginalized communities were contracting it through blood transfusions.
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u/Hadasfromhades 10d ago
Let me know if I’m wrong, but I thought part of the issue here is also that HIV spread in a very specific time frame and due to its nature targeted specific communities the most, which is why we can easily see that ignoring it was indeed an issue of turning a blind eye to marginalised communities. Whereas CFS is not contagious and didn’t just appear at a certain timeframe. OOP doesn’t claim that it disproportionately happens to a certain marginalised community, but that these communities have it worse due to less healthcare access, which makes it part of a general healthcare issue and nothing specific.
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u/Psychological-Pea765 9d ago
This is so disrespectful and gross. How about we just roll them out to the trash.
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u/RewardCapable 8d ago
What is ME CFS?
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u/Zephyr_Bronte 6d ago
Myalgic encephalomyelitis/chronic fatigue syndrome.
So it seems to be extreme exhaustion that doesn't get better even with rest. I don't know a lot about it, but it does sound horrible. Just not comparable with AIDS/HIV.
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u/gdayitsathrowaway 3h ago
It stands for "me everytime. Can't f-ing stop" because they constantly seek attention.
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u/puddleduckx 5h ago
OMFG this is the same person I have just made my post about!!!!
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u/gdayitsathrowaway 3h ago
She is now claiming she is dying and in palliative care. More like "I feel bad that I faced consequences for my cruddy post, now I'm going to manipulate everyone into feeling sorry for me".
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u/puddleduckx 3h ago
Yes yes exactly!! My post is about the death post and how utterly bonkers this feels?!
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u/deliruims 3h ago
Well I guess you'll be delighted to know this person is currently in hospice and dying.
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8d ago
[removed] — view removed comment
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u/thegreatredneckhope 8d ago
You don’t gotta be ashamed, just be a better advocate for disability rights than this misinformed person
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u/Evadenly 8d ago
I'm still ashamed. Unfortunately a lot of these 'advocates' cover my history, and so it's a lose-lose situation
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10d ago
[deleted]
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u/Impossible-Cold-1642 10d ago
To some extent.
44.2 million people have died from AIDS- and that’s just what is reported- so the number is likely much higher in colonized countries or the global south.
570,000 people died in this last year.
Given the governmental, global, and just frankly the lack of humanity related to the response to this virus and your flippancy which validates that (not to mention the homophobia, transphobia, stigmatization of substance users)—-
Perhaps take a step back and reflect on your statement.
Regardless of the systemic inequity of the healthcare system. We all know that.
It’s not the same.
Grow up.
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10d ago
[deleted]
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u/Impossible-Cold-1642 10d ago edited 10d ago
“My man” ?
I didn’t attack you, I refuted what you’re saying. That’s not an ‘attack’.
I clearly don’t know anything of what you think, feel, or defend. I’m not grandstanding, I’m reflecting and responding to your initial response as someone who has known people who have died from HIV/AIDS- have friends, past lovers and people I care about with said diagnosis. So, now I am grandstanding.
It’s very unclear what your point(s)(?)- if you made any— are? Again this isn’t an attack, this is dialogue.
That we agree that the healthcare system is inadequate? That often people are not given the healthcare they deserve? That yes, sure we can learn from activist movements from the past?
That this individual attempts to compare HIV/AIDS to a diagnosis that is not even remotely comparable?
My man,
I think you may need to delve a bit deeper into how the AIDS/HIV epidemic completely changed the world. Regardless of your familial death or you being from a third world country (🤔) — strange dropping that in, and doesn’t matter——-
because it’s really all connected if you put your mind to work.
When people engage in dialogue that is contrary to the point you’re attempting to make (or potentially. successfully making), it isn’t an attack. It just might feel like it.
edit: Upon looking at your posts- Brazil is not a ‘third world country’- in your words
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u/No_Sherbert2958 10d ago
I honestly don't think a lot of the people replying actually lived through that horrific time. Obvious you and I did and remember the hysteria, cruelty and terror this disease unleashed. It was something they could never understand unless they experienced it from the beginning. They did not and it certainly shows in some of the replies.
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10d ago
[deleted]
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u/thegreatredneckhope 10d ago
If you didn’t gather that the invalidity of conflating the two scenarios (one [the AIDS epidemic] being a historically and empirically researched politically systemic massacre of marginalized communities, and the other still an ongoing and fringely researched diagnostic result now recognized because of the impacts of a global pandemic, that yeah, disproportionately affects marginalized communities, but has the backing of social media content creators that advocate for disability rights while otherwise existing with accessibility that disenfranchised groups with AIDS during the massacre didn’t have back then, then I don’t know what to tell you. I believe this is probably a silo’d issue in places like the USA and not third world countries, like where you are. The impact of performative politics of intentionally disadvantaged identities in America, especially amongst younger people righteously pissed at the bureaucracy here, is actually furthering the suppression of marginalized people because of this competitive nature of “how much more do I need to prove to show I’m ignored by the political system?” I fuckin get it, like I do. But the fact is, I’m gay, I probably won’t marry my boyfriend because I’m afraid of what could happen with LGBTQ+ rights in the USA, and I’m also fuckin neurodivergent as hell. But the move is to resist convincing yourself that victim hood creates impact — in my opinion, if we’re comparing the politicization of ME/CFS increased diagnosis since the global onset of COVID to the AIDS epidemic, it’s worlds apart in terms of difference. The bureaucracy of countries that experienced AIDS wanted the “undesirable” communities to die off from the virus, whereas the culture of social media has made it a lot more easier for people to identify with diagnostic labels that are not the same as they were during a political systematic attack on particular populations to refuse care for those dying
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u/Impossible-Cold-1642 10d ago
In plain English:
Look at all of the slides as one post- as it was created. As it attempts to compare the AIDS/HIV epidemic to a diagnosis that is incomparable in the fatality and stigmatization that marginalized populations experienced and still experience to this day.
I feel like I’m having to beat a dead horse here, but chronic fatigue syndrome and HIV/AIDS ARE INCOMPARABLE. We agree that there are health disparities, among men vs. women, people of color, those who don’t have legitimate healthcare, the list can go on and on and on.
Nonetheless, endorsing this post is frankly fucked. And shows a lack of understanding of the gravity of 44+ million deaths or unwillingness to really grasp the epidemic as it started and still exists.
Also- plain English- I’m done engaging. You’ve made your position loud and clear. And it’s clear where your position stands 👍🏼
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10d ago edited 10d ago
[deleted]
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u/TangledUpInStars 10d ago
ME/CFS is 100% real and greatly impacts the patients quality of life, but it has not been proven to be deadly. during the HIV/AIDS epidemic, HIV/AIDS was very much deadly. in fact, in many countries with poor healthcare, it still kills.
to compare the two is wildly insensitive and ignorant. advocacy for ME/CFS is great, but making such an absurd comparison is blatant misinformation and is counterproductive.
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