worried about MECFS and internets
i posted this on another sub I've tried to shorten it for here
tl;dr I believe I have MECFS but when I look online influencers tell me things that make it seem like I'll die if I keep working and pushing, but if I don't work I will be homeless sooner rather than later.
there's helpful advice in there but I don't know if I'm allowed to block people with very severe/severe without being put out of every community help or if I can find advice anywhere else or something
long version:
every activity I do wipes me out. in the long term I feel myself more and more fatigued. i only feel best when I'm lying down it's like magic small bit of energy back. I do have other health issues, including SLE which is energy limiting Apparently PEM is only present in MECFS
I have no support system so I work, I come home and I can't eat or shower I just have to get into bed.
I also think I have mental health issues or something, in short I hear voices and feel targeted and nervous seeking help for things.
the concept of ME/CFS came up on my feed a few weeks ago. Some creators keep coming up. They can do as they want, this post isn't at them, more the effect it's having on me so I hope nobody feels like that if they do I'm sorry.
I see a lot of stuff on tiktok about how like, it's terminal, you'll be sicker than AIDS patients/the sickest patients in the world and you have to stop all activity otherwise in future you're going to end up severe/very severe or die and how there's no way to improve your symptoms.
If I rest like they say I have to I will starve and I will die.
Said influencers also give conflicting information as to how the disease works often with no sources. I found scientific journals reassuring mods.
But then the moment I go try to look online again also the influencers say it's like mitochondria dying and running out of fuel and your brain is literally starving of energy and you can't do anything about it. No real evidence, describing it like it's a terminal mitochondrial disease.
I don't minimise suffering that people go through here, but these influencers are literally telling me I will drop dead if I do not stop everything but if I do stop everything I will starve and be homeless.
do I simply need to log off and block and ignore people that make me feel bad, even though one has equated doing that to violence against people with MECFS, and I'm worried it makes me a bad person so the community out there won't help if I need help because I blocked or ignored people because of that
or am I actually fucked or are there other places that can help me get information on managing this without telling me I'll die
Posted Aug 29, 2026, 1:31 PM UTC