I started my blog, Occupy ME, in February 2012 with one fundamental goal: to speak the truth about living with Myalgic Encephalomyelitis (sometimes called Chronic Fatigue Syndrome). This disease is more disabling than MS or congestive heart failure, and yet people with ME are invisible to the world. No more! I write to give voice to the struggle. I want people with ME to have the information they need to advocate for themselves and each other. Occupy ME covers politics, science, and life with ME. Nothing is more rewarding to me than hearing how people have used my blog to inform their own advocacy.
I am constantly amazed at the depth and breadth of research, the sharpness of the insights and the quality of writing that Jennie brings to her blog about myalggic encephalomomyelitis. That she does this while suffering from the disease herself is all the more remarkable. She is a true gift to a community of disabled patients in desperate need of someone to speak out for them. — Mary
For many/most patients and interested others, it can be hard to follow and keep up with US ME/CFS activist issues, particularly relating to government agencies and contracts. Jennie does a great job keeping up-to-date (as well as digging deeper with FOI requests) and sharing her knowledge on her blog.
I’m a Patient Leader