About CFS Blues

Kathy's picture
Photo taken at European Sleepworks, Berkeley CA

“The CFS Blues” was recorded as a fundraiser for the American Association for Chronic Fatigue Syndrome’s 7th International Conference in Wisconsin, September, 2004, and to advocate for better awareness of CFS.

I fit the criteria for CFS. But it’s hard to describe this disease to others. I have been ill since college, but I still haven’t figured out an elegant, effective way to talk about something so profoundly awful and insidious using the name “CFS.” You know what happens. “Oh, that’s where you’re tired all the time, oh, I have that too, you get it from stress, oh, have you tried vitamin C?” “CFS” gets no respect, no respect at all. It’s the Rodney Dangerfield of illnesses.

I’ve been diagnosed with CFS for over 20 years (OK, first it was Chronic Epstein Barre Syndrome. It’s also called Myalgic Encephalomyelitis, M.E. outside the U.S..) Fortunately for me, I’ve had the care and support of my husband all that time, so I haven’t had to become a ward of the state. And thanks to CFS, I also haven’t had to be bogged down with life’s little annoyances like a career, family, travel or other adventures. That has left room to sometimes be able to focus on my music: playing guitar, percussion and singing. Over the years I’ve been lucky enough to be in several small bands, ensembles and choirs. In the summer of 2004 I decided to check out a songwriting class. It was led by a wonderful teacher and musician, Carol McComb in Palo Alto, California. I never thought I could write songs, especially about a subject so daunting and close to me, but it was the first one I presented in class. I soon learned about the conference in Wisconsin, and was on my way, with the help of Carol and many other supportive friends, to recording “The CFS Blues” and sending it to them as an exclusive fundraiser.

All of the information in the song, to my best knowledge, is correct. (Check the Links for more info.) The famous people mentioned either have had CFS and are in remission, or actively have it. I took the “million of us” from the most recent prevalence report for the US. And yeah, one of my doctors really did say, “If I were you, I’d shoot myself”. On more than one occasion, actually. It was meant to be sympathetic, not prescriptive, but I don’t think she realized how it came out.

Kathy's picture
Photo by Erin Malone

This song comes from my frustration of needing a name that actually describes the serious nature of our disease, as well as the need for better public and professional awareness about it. I believe part of our healing must come from feeling understood and integrated into the wider community, instead of marginalized and isolated as we are now. “Coming out” with this song in class, and now being able to present it here, has been a healing experience for me. I’m grateful to everyone who has helped me on my path to sharing it.

And, I’d LOVE to see the movie Blake Edwards could come up with on CFS. Make it a comedy. With a strong female lead.

-Kathy Goll-Derstine