Sandy, after all said and done still has hope

this is sandy, i asked her for a Skype interview

she said she is too ill right now,

she was so kind, apologizing that she

was too overwhelmed looking for medical

treatments over the holidays.  sandy said to use

any of the words we had on messenger

"Yea, ME is like the body breaks down and goes to a near death state but refuses to die and everyone is different in how sick they are and what symptoms they have and what helps them. I have been sick for 9 years, but wasn't exactly well before that either, so it's hard to say where the line of sickness starts and health ends. And mine started out very strangely, with a rare and disabling eye condition, and didn't morph into ME until years later. Figuring out the next move is hard. I feel like when you reach a certain severity, it's all about day to day survival...trying to plan a next move is nearly impossible."

below is sandy's husband along with her words

I didn't sleep last night, again. Not one minute. This is not uncommon for me, despite the fistful of medications, herbs, supplements, teas, and practices. My heart raced, hot and cold sweats, untouchable widespread pain, along with dozens upon dozens of other unbearable symptoms.

This afternoon, when I was finally able to reach for my phone, I realized that today was the global protest for ME. My husband had attended the protest. I had no idea he was going to until I saw this pic he texted me. In that poster is Ron Davis, world famous Stanford geneticist who had been named one of our greatest inventors, along with the likes of Elon Musk. And yet, he struggles to get federal funding to study the disease that is killing his son, instead relying on private donations.

I was beyond moved. And then I cried.

I cried because the afflicted aren't the only ones missing from their lives. Our caregivers are missing, too. My husband looks tired because he doesn't sleep much either - between work and care taking, there is little time for him to do much else. He's healthy, but like all other caregivers and scientists and doctors and advocates devoted to this cause, he is missing, too. He has missed exciting career opportunities because it would require too much time away, countless family and social events, travel, sporting events, his hobbies of golf and basketball league, along with all the things we said we would do together.

Awareness, understanding, equality, and funding is missing and desperately needed.

Check out #millionsmissing for list of protest demands.