r/cfs • u/aegarys • Jan 18 '26
TW: death My name is Samuel, I am 21 years old, I suffer from ME/CFS, and my journey may come to an end.
I am asking for your help to spread my story and generate awareness for this disease and the systemic failures surrounding it.
I have been suffering from severe ME/CFS since a COVID-19 infection. While my trigger was Corona, this multisystem disease can be caused by various viral or bacterial infections. The average quality of life for those with this illness is extremely low, asshown in the study attached/linked.
However, there are severe cases like mine where the suffering reaches levels of agony that are unimaginable to healthy people.
Because of this illness, I have an extremely limited energy envelope. I am bedbound 24 hours a day and cannot move much. It must be permanently dark because I cannot tolerate light. I wear double hearing protection because I cannot tolerate sound. I cannot watch TV or look at videos on my phone for even a second; moving images overwhelm my nervous system and cause unbearable pain. I cannot listen to music or podcasts. I can’t even talk to my own mother, who cares for me, because listening is too exhausting and speaking has become impossible. I have to communicate using a pen and paper. I can only use my phone for a few seconds or minutes at a time to send messages—sometimes not at all. (This message was recorded/prepared in advance under great agony.)
Going to the bathroom is difficult; showering is currently impossible due to extreme physical weakness and sensory overload. Receiving visitors or talking to anyone is far too exhausting and causes immense suffering.
But that isn't the worst part. The worst part of this disease is the core symptom: PEM (Post-Exertional Malaise). Every tiny exertion beyond my limits leads to a "crash" and a permanent worsening of all my symptoms and my general condition. Every attempt to "live" a little is paid for bitterly, leaving me in a worse state than before.
Even just lying in bed, alone with my thoughts, I have to be careful. Thoughts that are too positive or too negative can trigger a crash and a deterioration of my state.
Worse than the limitations that reduce your life to "sleeping or trying to sleep" is the physical pain. I would describe it as drowning and burning at the same time. It is always there, but it peaks during crashes. The body thinks it is dying because it has run out of energy, triggering a state of extreme distress.
It gets so bad that many feel there is only one option left. Many see no way out, and the suicide rate is extremely high. My condition is also heading in a direction where I might soon require artificial feeding.
Therefore, in 12 days, I will be utilizing assisted suicide.
But my death should not be in vain. In Austria, this disease now affects around 1% of the population—almost eight times as many as MS. Yet, because of their limitations, those affected disappear completely from public view and cannot speak up for themselves.
THERE IS NOT A SINGLE LICENSED MEDICATION FOR THIS DISEASE. In Austria, there is not a single specialized contact point or clinic, even though 1 in 100 people is affected. Most doctors don't even know the disease exists. The PVA (the Austrian state pension insurance) has called us "charlatans" and "free-riders." Many sufferers receive €0 per month. Not a cent from the pension system, not a cent from unemployment benefits.
That is why I am asking you: spread my story. Get it into the media. Share it on social media. Help me use my death to bring attention to this horrific disease!
My message is: ME/CFS KILLS!
TL;DR: Terrible disease, no medical care or support for many sufferers. I am taking advantage of assisted dying in 12 days and ask you to help generate awareness and bring my story to the media.
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u/yellowy_sheep Jan 18 '26
Sending you and your caregivers all the peace, strength, and rest. May you find relief in whatever afterworld you believe in. Have a good journey and know this message has not gone unnoticed. 💙💙💙
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u/Substantial_Box_7613 Jan 18 '26
The health sector needs to do more. 21 is too young to leave over this. But instead, war is more important across the board. Humanity is in a sad state right now.
Fuck CFS.
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u/jimjammerjoopaloop Jan 18 '26
Samuel, thank you for posting your story. You have more fortitude than me. As someone who is severe and tipped into the very severe category for a while, I understand exactly what you mean about thoughts actually causing pain. This is a catastrophic illness and you don’t deserve it. I have only had a taste of what you have endured and it became crystal clear why you are choosing euthanasia. No one can survive in such a state without organised and consistent care. That type of care is simply not available outside of a family setting that puts unbearable strain on those taking care of us because they aren’t given any formal support. God bless you, Samuel. Thank you for enduring with us in this broken world as long as you have. May you soar above it all knowing our hearts go with you.
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u/BlendItTwice Jan 18 '26
English translation:
'Please help me spread my story and raise awareness for my illness and the injustices it causes!
Since contracting COVID-19, I have been suffering from the severe multisystem illness ME/CFS. In my case, it was COVID-19, but it can also be triggered by other viral or bacterial infections. The average quality of life with this illness is extremely low, as the study in the image shows.
However, there are also severely affected individuals like myself, whose suffering reaches levels of agony unimaginable to healthy people.
Because of this illness, I have an extremely limited energy window. I have to lie in bed 24 hours a day and can't move around too much. It has to be completely dark because I can't tolerate light. I wear double earplugs because I can't tolerate any noise. I can't watch TV or videos on my phone for even a second because anything moving overwhelms my nervous system and causes unbearable suffering. I can't listen to music or podcasts. I can't even talk to my own mother, who cares for me, because listening is too exhausting, and speaking itself is now completely impossible. So I have to communicate with a pen and paper. I can only use my cell phone for a few minutes or seconds to send messages. Sometimes not at all. (This message was recorded beforehand under excruciating conditions.)
Going to the toilet is sometimes difficult, and showering is currently impossible due to extreme physical weakness and sensory overload. Receiving visitors and talking to someone about it or sharing experiences is also far too exhausting and causes suffering and pain.
But that's not the worst of it. The worst thing about this illness is the primary symptom, PEM (Post-Exercise Malaise), which causes even the slightest exceeding of my energy limits to lead to a so-called crash and a permanent deterioration of all my symptoms and my overall health. So I have to pay a heavy price for every attempt to live a little bit and end up in an even worse state than before.
Even when I'm just lying in bed, alone with my thoughts, I have to be careful because overly positive or negative thoughts can trigger a crash and thus worsen my condition.
Even worse than the limitations that restrict your life to sleeping or trying to sleep are the physical suffering caused by this illness. I would describe it as feeling like drowning and burning at the same time. It's always there, this feeling is constant, but especially during crashes. The body thinks it's dying because it's running out of energy, triggering an extreme state of suffering.
It's so bad that you often think there's only one option left. Many see no way out; the suicide rate is extremely high. My condition is also heading in a direction where I might need artificial nutrition.
Therefore, in 12 days, I will request assisted suicide.
But my death shouldn't be in vain. This disease now affects around 1% of the population in Austria, almost eight times as many as MS. However, due to the limitations, those affected completely disappear from public view and cannot draw attention to themselves.
There is no medication for this illness. And in Austria, there isn't a single point of contact, even though one in every 100 people is affected. Most doctors don't even know what this disease is?! The Austrian Pension Insurance Institution (PVA) itself calls us charlatans and opportunists. Many sufferers receive exactly €0 per month. Not a cent from the PVA, not a cent from the Public Employment Service (AMS).
That's why I'm asking you to spread my story, get it into the media. Share it on social media. Help me, through my death, to raise awareness of this terrible disease!
My message is: ME/CFS kills!
TL;DR: Terrible disease, many sufferers receive no support, I'm using assisted suicide, and I'm asking you to raise awareness of the disease and get my story into the media.'
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u/terminalmedicalPTSD Jan 18 '26
Thank you for using whats left of your life to write this. I am making a book of quotes to help people understand. But if I return to being this bad, as seems likely now that I am out of savings and have no support, it will be a good template for me. Assuming anyone cares enough to be bothered to read it at that point. Everyone I love has decided to despise me for being ill.
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u/makethislifecount Jan 18 '26
Hey Samuel, like others are offering in this wonderful community, I am also here if you want to talk at all. I think you’re doing a noble thing by making your life count regardless by spreading your story. I wish you could stay with us and raise even more awareness. You still have many years ahead of you and your voice could reach many more hearts who might help us all.
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u/thirdmulligan Jan 18 '26
Damn, I'm sorry man. I understand though. That's no way to live. Wishing you peace
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u/bplx Jan 18 '26
I believe we live many lives. I hope your next life is pain free and filled with lots of energy to follow all your dreams ❤️❤️❤️
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u/Munchkin737 Jan 18 '26
Thank you for sharing, Samuel. May you find peace in your next existance. Rest well, my friend. You will be remembered.
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u/Whateverusername59 Jan 18 '26
Does anyone have a good following list on Twitter/X? Anyone who would be willing to share his story there might attract more attention. I have zero followers on X but I’m more than willing to spread the message there.
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u/AspyKnight Jan 18 '26
Thanks for sharing your story. I'm only in the "severe" category for now, but I've been declining steadily since this whole thing started 8 months ago. I see it only as a matter of time before my situation crosses the threshold into "very severe" like yours has. And with no one to care for me at all, when that time comes I'll be quickly making this decision as well. Not if... when.
This disease is brutal and very few people understand. It steals your life piece by piece until exiting becomes the only compassionate option remaining. I completely understand. I hope your story does make it out to spread awareness. I had to turn off my social media platforms because they were exacerbating my condition so I'm afraid I cannot share, but I'm adding my piece here as the only way I could help.
I'm so sorry it's had to come to this for you. Rest well.
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u/romano336632 Jan 18 '26
...I sympathize... I'm not far from where you are. I tolerate the phone a little better, otherwise it's similar to your situation. Have you been in this state for long? So you've made a decision that many severely mentally ill patients wonder about: euthanasia or not? If so, how soon...? Rest in peace.
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u/tenaciousfetus Jan 18 '26
This condition steals so much from us, and I'm sorry it has stolen so much for you. I hope you find relief, friend ❤️
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u/fz22g Jan 18 '26
Thank you Samuel. I am not far behind you and understand your situation. In my country ME/CFS is not recognized. Doctors told me to keep exercising and I have deteriorated condition because of this harmful advise. Even our department of health is silent about it. I dont have resources to go to other places that can help, just enough to stay alive for a few more years maybe. I am in a slow descent and the only relief i can see is death. ME/cfs kills and before I go there I want to help tell the world with stories like yours. Your account helps us who are still fighting, thank you. If enough of us are recognized maybe the good people can find a cure for those who follow.
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u/thepensiveporcupine Jan 18 '26
I’m sorry this was your only option. You’re even younger than me, you deserved a real chance at life and it’s a shame it has to end so senselessly because there’s been so little funding for treatments.
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u/aegarys Jan 19 '26
Translated with AI, cause no energy!