As a long-term sufferer of myalgic encephalomyelitis (ME) - known in the US as Chronic Fatigue Syndrome (CFS) - I know what it is like to bear the stigma of a chronic illness which has not been accepted by the medical community. There are a million more like me in the US, and I want to do something to help them.
Before I contracted the illness, I was finishing my PhD at UT Austin in Speech Communication. At the same time, I was director of a non-profit refugee aid organization for Guatemalans who had lost their homes and families during the war known as "La Violencia." It was during my trips to the refugee camps in southern Mexico that I became ill.
ME/CFS is the central focus of my professional life. I have authored a book on ME/CFS, Chronic Fatigue Syndrome: A Treatment Guide, which is considered the definitive guide to treating the illness. The Guide has been endorsed by the leading medical experts in the disease. I currently work as an editor for ProHealth, the largest of the ME/CFS websites with a million visits a month. My job keeps me up to date on the latest research and developments.
In April 2015, the Mass CFIDS Association, the nation's oldest regional non-profit for ME/CFS, voted unanimously to appoint me the executive director of a project to form a national non-profit for ME and CFS patients. This is an idea whose time has come, as currently there is no national organization to represent patient interests, to provide them and their families with reliable information, and to help them find physicians and health care providers with expertise in the illness.