CFS Tuesday

Part of our ongoing series about life with CFS.

Today is Lobby Day for the CFIDS Association of America. Almost 100 patients, caregivers, family and friends are pounding the halls of Congress to ask for more federal research dollars. I will not be with them.

I went to Lobby Day last year. Here is what I wrote about the experience then: "I felt empowered and encouraged that other patients felt it was important to participate, and that staffers felt it was important to listen . . . If CFS were not an invisible illness, we would not have to beg for research crumbs. So what’s the answer? MAKE THE ILLNESS VISIBLE!" But here is what I said about the aftermath: "Recovering from Lobby Day 2006. It’s a bitch. I’ve seen a lot of my bedroom ceiling and my nightstand. . . I don’t feel too terrible unless I get up and walk around. You know, for big things like using the bathroom or getting some water. So what am I complaining about, really?"

Although I felt the experience last year was valuable and empowering, I chose not to make the same sacrifice this year. Life with CFS means hard choices and not doing important things you might desperately want to do. Lobby Day is another one of those things.

But I will not be unrepresented. My mom and best friend will be lobbying on behalf of me and the more than one million other people in the United States with CFS. Today, a very few, dedicated people will try to speak loud enough for our government to hear. They will ask our lawmakers to mount a meaningful response to this illness, which costs our economy billions of dollars in lost productivity and healthcare costs. They will ask Congresspeople to pay attention, and to DO something about all that patients have lost and will continue to lose until there is a cure.

Would you like to help? Join me at the Virtual Lobby Day and write to your own representatives. Or donate to support the work of the CFIDS Association on behalf of the million-plus people like me.