ME/CFS is not rare. It’s ignored. Every May, we raise our voices for the millions who can’t. From 2020 to 2025, nothing has changed fast enough. We’re still here. Still missing. Still fighting. #MillionsMissing #MECFS #InvisibleIllness #MEAwarenessMonth Repost it for awareness !!

If you were able to go on vacation for one week as a healthy person where would you go … I’ll start Korea or Hawaii #mecfs #longcovid #pots

Does anyone here take good prebiotics and probiotics (without getting stool tests done), just for general gut health coverage? Products from Europe or even better Germany are desirable

I will never experience love again. Even if I fully recover, nobody in their right mind would date someone who spent their whole 20s in bed, missing out on so much. And I have standards too. I’m not just going to date anyone. #mecfs

I’ve tried so many things, even things that scared me, pills not even on the market. I’ve seen countless doctors and spent more money in the last few months than I did the entireyear I lived in AU. There aren’t many options left, and I haven’t been mild even once. I’m losing hope

Please, God, let me fall asleep quickly. Let my body rest deeply, and let me wake up tomorrow feeling even a little better than I have this past week. I’m begging you. I just can’t keep feeling like this anymore.

2) Not on me, but on herself. The burden I carry is already so heavy, and seeing her like that breaks my heart even more, even though part of me resents her for not really being there for me.

haven’t seen my mom like this in a long time. It’s 1 thing that she’s not really there for me during such a hard time, but it also feels like she’s losing herself. Her eyes seem darker somehow. I understand that she’s struggling too, but it feels different — like she’s giving up.

It’s one thing to be stuck in bed because of a chronic i, but it’s another when it’s not just fatigue. Your legs burn, your stomach turns, you feel dizzy, and your eyes ache. You feel like you have the flu all over again( silent inflammations) It’s just too much to bear.

2) And every time it happens, my mom says no one in her groups acts like this, that it has nothing to do with ME/CFS — that I’m just unstable.

Sometimes I feel like I’m the only ME person who has mental breakdowns. Screaming until it hurts to swallow, throwing things, making a mess, knowing PEM will hit after. But sometimes I just can’t keep it inside anymore.

I'm so tired of hearing "it's okay that you can't do this or that, focus on your health, on resting, that's the most important thing". No, I don't WANT TO have to constantly be focusing on my health, I want to be angry about not being able to do the things healthy people can do

I'll still occasionally accidentally overexert physically. Still haven't fully adjusted to having capacity this low (plus have had some minor deterioration in more recent times) But yeah I'm still sometimes surprised by how little I can do, my physical capacity is really low

Being severe again makes time feel different. I don’t really know how to put it it feels like time stops, but at the same time it keeps moving. You lose track of the days, and suddenly Monday has turned into Friday. There’s no routine anymore. You’re just stuck

I didn’t appreciate having mod #mecfs as much as I should have. Dgmw I was grateful, but I was still struggling. The symptoms were there 24/7 and never went away. Still, I could wash and feed myself and even go on short walks. Now I’m stuck in bed, and it feels surreal.

Being severe again makes me think about my situation even more. When I was moderate, I could sometimes go to the supermarket w mom, watch a movie w sister, build a Lego set, or draw. Now all these thoughts especially the things that have already happened to me come crawling back

Knowing I spent the whole of 2023 confined to bed makes my skin crawl, my stomach turn, and my eyes water. #mecfs #pots #longcovid

Can POTS/ME cause blurry vision, air hunger, and a “bubble” feeling even without a high heart rate? My pulse can be ~80 and I still feel disconnected, even in a quiet room. Could this be low brain blood flow or autonomic dysfunction?

Another day in paradise … ups sorry auto-correction … I mean in hell #mecfs #pots #longcovid

Have to tell you: doing a sit to stand, rising from bed or sofa: HR 67- 148: it feels dire, it feels like dying, heart pounding in chest, in ears, in throat, in fingertips. It’s truly horrible. It settles quickly, but the fright remains. DO NOT GET COVID. Do not. . 🙏🏻

Question: if my parents want to go on vacation after not going for the past 4 years. How am I able to stay alive in this week. I’m severe so no cooking or cleaning and if I need to prepare some instant ramen I will not be able to go to the bathroom … so like how is this working