Severe ME Day

May 12 was ME/CFS Awareness Day, which I failed to write about because I've been terrible about blogging this year. There were #MillionsMissing events all over the world to highlight how patients have been missing from their own lives because they suffer from a disease that makes them too sick to work, too sick to socialize, and in some cases, ultimately too sick to survive.

Tucson's #MillionsMissing event happened on Saturday, May 11, at Monterey Court.

Sonya Heller Ivey talked about her own experiences with the disease. She's recovered to the extent that she can occasionally leave the house, but she had to sit to speak.

Amber Frame organized the event for the second year in a row. She has a family member with the disease.

Mayor Jonathan Rothschild said a few words, also for the second year in a row.

And Cinder Bridge provided the tunes. (Thanks to Nancy Biggins for the photo.)

So that was ME/CFS Awareness day. Today is Severe ME Day, which honors the most severely affected people. Patients with severe ME often spend their days in darkened rooms so that they can't be hurt by light, sound, or touch. They may not be able to stand, dress themselves, bathe themselves ...

Severe ME Day is a good day to turn awareness into action and donate to the Open Medicine Foundation, whose mission is to find a cure, and #MEAction, which educates the population about the disease and advocates for individuals who have it.