I’m Emily Taylor, Solve M.E.’s Director of Advocacy and Community Relations. I’m also a caregiver for my mother who has ME/CFS.
My mom, Stephanie, taught me to fight. Her struggle with this terrible disease drives me to fight. And, I fight for her and the millions of others who don’t have the support of a loving family, appropriate medical care, or even a proper diagnosis of their illness. I am honored to fight side-by-side with tens of thousands of ME/CFS advocates trained, supported, and empowered by our work.
I have seen first-hand the damage caused by poor information about this disease. The acute pain of being terribly ill and having a medical professional tell you “it’s all in your head” is one of the most heartbreaking and belittling experiences I have ever witnessed. I am not exaggerating when I say that this experience in a medical setting drives people to suicide.
My experiences as my mother’s caregiver have taught me that the fight against ME/CFS looks different for each person. For me, my commitment to improving the life of my loved one led me to becoming an advocate. If you’d like to hear more of our story, you can watch this video. Filmed at an ME/CFS benefit concert in Petaluma, CA in 2019, I talk about how my mother’s collapse in 2008 changed the trajectory of our lives.