alli🌞
Region: US
Friday 28 August 2026 14:24:01 GMT
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Charly :
I agree! People just don’t take this debilitating illness seriously and I don’t get why. I cried so much yesterday about Sam (hero.my.hero) and the general public is so ignorant to this even happening.
2026-08-28 14:31:36
173
estelle 😋 :
genuinely renaming it to “chronic fatigue syndrome” has done irreparable damage to people with ME. no one is taking it seriously and it’s terrifying.
2026-08-28 14:34:29
911
✨️✨️✨️✨️ :
if you fall off a building you don't die from the fall. you die from the impact. but if someone said "they didn't die from the fall they died because of brain injury" it'd be seen as rude. I don't see why these people can't apply the same logic. "oh they died from malnutrition not ME!" ??? they died from malnutrition because their ME was so severe they didn't have the energy to chew, swallow and digest. 6 and half a damn dozen.
2026-08-28 14:35:44
783
gulfcoastgremlin :
So many people with hEDS have passed in the past year it’s so disheartening meanwhile even people within the EDS community say hEDS is mild 😐 being bed ridden and not able to walk or hold my head up last year and then amount of pain I live in everyday and seeing so many mutuales and people I know starve to death because their digestive systems fail doesn’t sound mild to me.
2026-08-28 17:24:48
199
Shadow♣️ :
It scares me, because I'm a teenager, and I could possibly have ME/CFS, but being able to discuss it with a doctor while being younger, not having much money, and not many forms of transportation is extremely difficult. Among the fact there isn't a super specific diagnostic criteria(as far as I'm aware) It's so heartbreaking how many people are dying from this illness, it's so underfunded and under researched, and people just don't care
2026-08-28 14:32:37
50
Emily Turner :
I have ME. And the amount of disbelief there is with this disease is sickening. We’re not believed in so many aspects. And we need to be. Cause it’s the darkest and most terrifying illness.
2026-08-28 18:15:41
40
Shariefa :
what caused your ME? I had swine flu in May last year and never recovered
2026-08-28 15:43:47
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Kat De Santa :
if I pass from an aorta dissection I pass because of complications of a connective tissue disorder. i have Hypermobility Syndrome and even though im low risk of having an aorta dissection it doesnt mean there's no risk.
2026-08-28 19:30:56
78
Mir :
Yes, just because something isnt terminal doesnt mean it cant be fatal.
2026-08-28 15:13:29
71
Fox :
I got ME/CFS in early 2009. I'm so very, very tired. Thanks for the support and understanding.
2026-08-28 16:18:50
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Joel didn't die. 😝 :
M.E isn't taken seriously and I'm so tired of it. What do you mean MY OWN DOCTORS don't know the basics of it? It's so hard to make any progress with doctors who don't know what to do with me, along with any others nearby with M.E too
2026-08-30 05:44:52
14
ShiShi Rose :
What’s so wild about people saying you can’t die from it is that it’s literally brain inflammation. Like wtf do they think happens when the brain becomes severely inflamed???
2026-08-29 05:38:06
15
Chel𓇼 :
I didn't know Sam... I just checked his profile and he was following me, makes it hurt that bit more 💔
2026-08-30 00:53:24
8
Cara Reel 💙🌈 :
people who are denying this is real are using the excuse that it doesn't say ME on their death certificate but my mom's said multiple organ failure due to steroids but the steroids were for her being malnourished from severe celiac disease for over 10 years. The conditions may not be listed as cause of death but it is still the problem.
2026-08-28 18:02:01
7
corey.h.creates :
Thank you so much for speaking up for the ME community even when you yourself don’t have it. It helps so much when other that don’t have the disease understand it and speak up about it. Thankyou so much
2026-08-29 17:41:24
6
grubenis :
Thank you alli. It’s terrible to live with. There’s be an insane influx of ableism regarding ME.
2026-08-28 15:10:04
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🎃👨🏼🦼Teagan🩹🎃 :
thank you for always standing up for our ME community 🫂
2026-08-28 19:56:00
9
Hannah Zoe :
I’m so sorry. I’ve had creators I follow with the same conditions I have die, and it’s so sad and also terrifying. Sending hugs 🩷
2026-08-28 14:30:08
9
Terrie ME/CFS :
Malnutrition is common with ME, and malnutrition is as damaging to a liver as too much Tylenol and alcohol. Nausea and just the inability to digest proteins optimally drives the malnutrition. All the organs of the body need energy from the mitochondria. So, when ur body’s mitochondria are suppressed and then less energy, the brain, digestive system, muscles, nerves, all are not operating well. Also, emergencies with blood sodium and electrolytes can cause death. And, medical neglect can cause the death. As well as other ways to die with ME.
2026-08-29 04:32:19
19
avanna22 :
People in general don't understand it and until they go through something like it,many will have zero empathy. The only thing you can do is keep talking about it.
2026-08-29 13:23:11
10
Mateo (Armand's version) :
Thank you for continuing to post about him, helping make sure his light will never dim. In our three years of friendship he impacted me and helped me in ways words will never be able to describe. I'm just lucky I got to know him and was local enough to be able to know him IRL
2026-08-28 20:56:27
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marymaggers :
If I die from CFS and anybody dare come to my funeral I will haunt them forever!
2026-08-29 12:18:48
5
💜Sarah 💜 :
Take for the whole chronic illness community. Just because a certain chronic illness doesn’t kill YOU doesn’t mean it doesn’t kill OTHER PEOPLE. Many of these illnesses have slightly different strains (example type 1 and type 2 diabetes) and many of these disorders have other factors that impact survivablity for example many disabled people have comorbid disorders for example often times people who develop anxiety are more likely to develop depression and so then some people with anxiety have TWO disorders anxiety and depression instead of just anxiety. Having another disorder putting pressure on the first one puts your body under more stress and impacts survival. In my research many people who have MECFS also have something else ontop of it. In addition a really sadly small amount of research has been done on ME so we don’t know if some people may have a more deadly variant or what.
2026-08-28 17:27:22
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Tammy :
I have me/cfs post covid…and I was so close to dying bc of pulmonary emobolism, and they just randmly caught it cuz I broke down crying bc of my horrible fatigue and panting. I had blood clots. I still feel the same btw…they don’t even believe me when I say I have long covid or mecfs :(
2026-08-29 20:35:44
7
. :
May I ask how they die from ME? Is it the lack of eating and the ability to stay healthy?
2026-08-29 16:21:06
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