Thread by @BeesBattle

Today (well, yesterday now) is #MEAwarenessDay. I've been one of the #MillionsMissing since age 16. I turned 23 last week.

There are so many things I could say about life with #SevereME, so many alarming statistics & horrifying, heartbreaking stories. (1/8)

But I don't have the physical or cognitive capacity to. So if there's just one thing you take away from this thread, whoever you are, please know:

We were and are people. We had lives, and often still have big hopes & dreams despite being mostly or completely bedbound. (2/8)

Most of us cannot tolerate basic sensory input so we must live in darkness, silence, isolation. Many are unable to speak and/or communicate due to neurological effects. Some cannot tolerate a comforting hug, a gentle touch – and this disease happens to children too. (3/8)

Some cannot swallow, digest, or tolerate food/drink and rely on tube feedings and/or parenteral nutrition (IV nutrition). Some are paralyzed. Any exertion can cause further decline in health – potentially permanently.

Some cases are fatal. (4/8)

I do think that many of us survive each day by hoping – maybe of very different things, maybe deliberately or unintentionally. But I think hope is vital.

Unfortunately, hope is often not enough, not without some sort of action to meet it....(5/8)

There is still very little funding dedicated to finding a cure or even an approved treatment for #MyalgicEncephalomyelitis. With more people developing #PostViral illnesses than ever, this is relevant to everyone, worldwide. (6/8)

We must fight for adequate federal funding to support research into this disease, and practical support for those living with it (including adequate treatment). Whoever you are, please use your voice. We need it. You just might too one day, and by then, it could be too late (7/8)

For now, I'll fight when I can, and rest when I can't, and I'll be grateful for the moments when I'm well enough to dream of a better future. And if any of my fellow #pwME are seeing this, please know: I'll keep dreaming of that better future for all of you too 💙 (8/8)