Let's Unite for ME/CFS – Let's Organize to Do Something Concrete

Hello everyone,

I'm a person with ME/CFS, and like many of you, I live every day with the frustration of a devastating, invisible, and still largely ignored disease. Despite the enormous impact it has on our lives, we often find ourselves isolated, without real medical or institutional support, and with very little public awareness.

Lately, I've felt an increasingly strong need to do something concrete. I'm not just talking about venting (although that's necessary), but about truly coming together to organize, give ourselves a voice, and start making some headway—even with small steps: an awareness campaign, a serious petition, a targeted fundraiser, or the creation of a support and advocacy network.

I know that many of us have very little energy. But precisely for this reason, if we unite, we can divide the tasks and each can contribute what we can. There are those who can write, those who can translate, those who have contacts with associations, those who can simply help spread the word.

Want to start talking about it seriously? We can create a group (on Discord, Telegram, or even via email) where we can discuss and figure out how to get started.

If you're interested, write in the comments or send me a message.

Together, we can do more.