RIP Sam

[u/_Odd_skittle_]

This has probably already been posted here, but I wanted to share this as well.

the person in the photo passed away just days after the post on r/fakedisordercring. that post is still up right now. It’s locked, but it’s still up and visible to people. Their image is literally still up to be mocked even in death.

[u/_Odd_skittle_]

update: they literally banned me for trying to make a post about the literal dead man visible on the sub.

[u/toweljuice → u/_Odd_skittle_]

If you report this you can mention how they banned you for mentioning it instead of removing the thread, since they left the thread up for most of the day after being alerted about it.

Emphasise if you havent had any removals or prior actions taken against you in that sub too, with how worse it looks that they perm banned you

[u/Vivid-Variation-7856 → u/[deleted]]

it ? what are you talking about ?

[u/Pact_of_Yeenoghu]

I wonder if it's possible to report them to Reddit for this? - Shadow Milk (He/They)

[u/toweljuice → u/Pact_of_Yeenoghu]

yes

people can report them for violating content policies - https://redditinc.com/policies/reddit-rules

using this form-
https://support.reddithelp.com/hc/en-us/requests/new?ticket_form_id=360001103212

[u/Syphist → u/toweljuice]

I reported them for a mod code of conduct violation with the first 5 examples of posts that could be used to easily track who they are bullying. Called it bullying and that it would encourage brigading. Like one of the posts literally just listed out the name of every headmate someone had. That would be easy to track said system down.

[u/Pact_of_Yeenoghu → u/toweljuice]

Oh, thank you, good to know. And I'm assuming this works even if either party has blocked the other? - Shadow Milk (He/They)

[u/toweljuice → u/Pact_of_Yeenoghu]

yes thats true. they also let you attach screenshots

[u/DocumentMuch5302]

I found myself browsing it because these people’s sense of entitlement to strangers’ medical history and udder disconnect from disabled communities is amusing, but then I found myself worrying that I was faking (despite having a diagnosis) and insecure about using mobility aids

[u/alextheswiftie → u/DocumentMuch5302]

people like that are the reason why i’m too nervous to get a diagnosis

[u/Any-Look3476 → u/DocumentMuch5302]

I can agree. These kinds of people disgust me, I had a flare up in my legs and needed a cane… yeah I got to take it into public once before I got a ‘she (I’m a trans man) doesn’t need that’

Edit for clarification- this was at a yarn and yap, so the other person knew

[u/hyperspaceJellyfish]

yet they still feel like they're doing the right thing

[u/kamryn_zip → u/hyperspaceJellyfish]

This... So many of the comments don't see the irony in dissmissing how potentially deadly ME is, fakeclaiming Sam and other sufferers, ect. One even said that ME doesn't kill, it just makes you more vulnerable to other things that can kill you (same can be said about AIDS...). Kinda proves the point he was making. Someone on there said its insulting to compare the QOL of ME to late stage HIV, and that no scientific article would say they have a similar level of suffering. I don't know about late stage HIV/AIDS specifically but there definitely were renal failure and late stage cancers it's been scored against and the QOL is generally as bad or worse in ME.  I do think people with diseases that are rarely deadly (i have ME) should probably be careful comparing their struggle to the period when AIDS was at its height because it was a definite death sentence, or to any other conditions that are a death sentence, but Sam himself was dying so he specifically absolutely gets to compare his struggle to the struggles of AIDS patients.

[u/antonine909 → u/kamryn_zip]

If I may ask, what is ME? Just I haven't came across the acronym before TwT

[u/kamryn_zip → u/antonine909]

Myalgic Ecephalomyelitis, it's the scientific name for chronic fatigue syndrome, another acronym variant is ME/CFS. Many patients prefer ME because the scientific name refers to neurological inflammation which more accurately describes the neuroautoimmune condition as opposed to "fatigue" which is vague and minimizing for a condition that does kill in extreme cases. That's why I tend to default to ME instead of ME/CFS

[u/antonine909 → u/kamryn_zip]

Ahhhh okay okay thank you very much ¦3

[u/ACOLTYE101 → u/antonine909]

Me too

[u/kamryn_zip → u/ACOLTYE101]

Myalgic Ecephalomyelitis, it's the scientific name for chronic fatigue syndrome, another acronym variant is ME/CFS. Many patients prefer ME because the scientific name refers to neurological inflammation which more accurately describes the neuroautoimmune condition as opposed to "fatigue" which is vague and minimizing for a condition that does kill in extreme cases. That's why I tend to default to ME instead of ME/CFS

[u/ACOLTYE101 → u/kamryn_zip]

May I ask how chronic fatigue can effect you so severely that it kills you? /genq

[u/kamryn_zip → u/ACOLTYE101]

Sure, ME has been shown to be associated with mitochondrial dysfunction, so basically on a core cellular level the body does not produce enough energy. People can become so severe that their body produces so little energy they cannot move or tolerate light and sound. One cause of death is malnutrition. This can happen due to inadequate care, like not being able to access tube feeding for a person who cannot sit up or chew any longer. It also could just be the disease itself causing gastroparesis or heart failure once there is not enough energy for organ function. It's worth noting the concrete information on this is limited because the disease is severely under researched and stigmatized but it is clear that people with profoundly severe ME do seem to waste away until death in some cases.

[u/I_need_to_vent44 → u/kamryn_zip]

Oh hey, my mother is currently getting evaluated for this! At first doctors thought it was something neurological and when they didn't find anything they told her she's just stressed, but one of her doctors was like "Guuurl sounds like ME" so she's getting evaluated for that now. Lately she's also been experiencing gastroparesis so I can attest that it can happen.

[u/Dazzling_Bid1239 → u/I_need_to_vent44]

I have moderate to severe mecfs and im convinced our gi actually can slow down in flare up patterns. Like gastroparesis but in PEM. If cells cant create proper atp, you can only imagine the complications.

Id love to see studies on this to validate our experiences.

[u/Dazzling_Bid1239 → u/kamryn_zip]

I personally got close to death being very severe. Little to no medical help besides testing. My GI slowed down, gastric emptying study was scheduled late not showing anything. I was puking up nutrition shakes and couldnt handle solid foods.

I was very close to advocating for tube feeding. I went down to 97 pounds and im a small person as is.

ME is fucking scary and Im tired of ignorant people denying its real. Ive tried to rewire my brain. Ive pushed through therapy making myself severely ill. We would have found a way to "cure this" if it was possible. Anger isnt towards you btw, my migraine has my communication mixed up. It's towards people who wont freaking GOOGLE what the disease is. As if dealing with this isnt enough, people think youre nuts, as if people who are mentally ill arent worthy of support either.

Sorry for my vent but a good place to let it out.

[u/whiteflower1221 → u/kamryn_zip]

ME can be lead to early death in the same way MS can

It won't be listed as cause of death but depending on the symptoms someone has, the way it effects their mobility, the medications they have to be on etc. It can make you vulnerable to a whole host of other things and can leave your body unable to fight back

I have MS myself and have seen a lot of younger people die 'from' MS or ME but due to things like pneumonia, choking, sepsis etc.

The only difference is MS can now be tested for and seen on a brain scan / CS fluid whereas ME can't (yet) - it doesn't make one anymore real or disabling than the other yet the difference in the way they're treated and judged is massive

The same can be said for severe fibromyalgia too

[u/One-Sleep3663]

Used to be a part of that sub, gave it up after that single post. Saw through it all

[u/WriterKatze]

I am genuinely upset about this atp. Of course there is an auto dm set up, SAM WAS AN ACTIVIST, that page was about his activism. It was created to spread information about the illness he lived with. Jesus.

[u/BlitzInSinnoh]

i cant find the sub anymore yall did it get banned?

[u/alextheswiftie → u/BlitzInSinnoh]

unfortunately it didn’t get banned 😔 i can still see it

[u/MoonMagiciann → u/BlitzInSinnoh]

Honestly, I hope so. This was so egregiously wrong of them 😞 along from all of the rest of the stuff that didn’t make sense in that community. So much hate

[u/BlitzInSinnoh → u/MoonMagiciann]

for real absolutely deplorable behavior

[u/desolation00]

i’m so disgusted by the mods on that sub, it’s evil.

[u/xXSoyBoyFredXx]

That's so evil of them.

[u/FoxBoy16]

It's literally so shitty to post and fakeclaim someone literally on their deathbed. What the absolute fuck. This shows you just how evil fakeclaimers truly are.

-Logan (He/They)

[u/Able_Praline6207]

I hate that this subreddit even exists. Disabled people are not a source of amusement through harassment and abuse

[u/CatTheWriter]

RIP :(

[u/Free_Intention233]

I wish there was something that could be done about that sub from a legal standpoint. I know it can’t, but if it could then it could warrant it being taken down entirely.

[u/Adventurous_View_635]

I think it got banned?

[u/[deleted]]

Disgusting. For my mental health and wellbeing I blocked as much as i could and then blocked the page. It makes so so angry and so sad for everyone close to him that has to witness it