Today is #SevereMEday. There is a reason why it's separate from the general #mecfs day (May 12). Severe ME is an extreme, torturous illness, causing sufferers to be bedridden, most have to lie in dark room 24/7, often in severe pain. And of course, the world doesn't see them.

A dear friend of mine has severe, progressive #mecfs. She hasn't been able to take a single step in years. Sound causes her agony, she has several extremely painful conditions yet receives no pain treatment. It's heartbreaking and makes me feel powerless.

Some with #SevereME are tubefed. Many are unable speak. Some die. All suffer.

"At the end of the month, emaciated due to his inability to digest food, he selected five final tiles and spelled out: D, Y, I, N, G. Then he rang a bell for his father." https://stanmed.stanford.edu/2016spring/the-puzzle-solver.html