r/LongCovid_MECFS_Fibro

"When they exposed the IgG antibodies from the long-COVID patients to nervous system tissues, they found that it attacked parts of the brain (locus coeruleus (brainstem – principle source of norepinephine, autonomic nervous system regulator, sleep, pain), thalamus (major regulator of sensory information (!), brain fog), meninges (pericytes/endothelium) (poor blood flows associated with reduced waste clearance, blood brain barrier problems, brain fog, headaches, neck stiffness), as well as endocrine tissues (low cortisol?) and a wide array of nervous system proteins."

Hey everyone, welcome to the group.
I decided to create this community because, like a lot of you, I'm brand new to Reddit and immediately ran into a brick wall of over-moderation. I watched my own valid, important story about being gaslit by a doctor get instantly deleted, and I've seen so many other people complaining that their helpful posts are getting rejected over minor, complicated rules.

Dealing with a life-altering illness is exhausting enough without having to fight internet gatekeepers just to speak your mind. It really pisses me off how much people try to control everything on here, and I think we deserve a better space.

This group is a shared sanctuary for those of us living with Long COVID, ME/CFS, and Fibromyalgia. We all share so much in common—from our physical daily limitations to the constant battle of trying to get skeptical doctors to take us seriously. For most of us, the medical system failed us, and we had to diagnose ourselves and go hunting for the right medical help on our own.

Because of that, we only have one main rule here: just be kind to one another.

Unlike other groups, you are absolutely allowed—and encouraged—to share resources here. If you found a book, a video, a research paper, a doctor directory, or anything else that genuinely helped you, please post it. We get better resourced by sharing what we learn, not by hoarding it or banning people for trying to help. We are all adults, and I trust everyone here to read the information shared and discern for themselves what is safe and useful for their own body.

You can vent here, you can share your stories about medical gaslighting, and you can share what has helped you without worrying about a robot or a power-tripping moderator deleting your post.

If you feel up to it, drop a comment below to introduce yourself. Tell us a bit about your journey and what you are dealing with. Let's actually support each other and build an open community together.

If you're constantly stuck in a boom-and-bust cycle like I am, the Bateman Horne Center has a free 49-page PDF called the "ME/CFS Crash Survival Guide."
It’s completely free and was put together by medical professionals who actually have these conditions themselves. It covers everything from mapping out your "energy envelope" to setting up your house so you can survive a massive crash without completely burning out.
I’ll put the direct link to the guide in the comments below if you want to save it or read through it.