Karen's Story When I was 43, I had started my own personal training business. Since I was always at the gym, I figured it was reasonable to earn some money from it. I took the National Council on Exercise test. It wasn’t easy, but I passed and was excited to begin a career in something that I was so enthusiastic about. I really believed exercise could help people live longer and healthier lives. Suddenly I came down with what seemed like some type of flu. I didn’t recover and ran a temperature of at least 100 degrees for three months. No one could tell me what was wrong. I felt horrible and my exercise buddies jumped the " friend ship” like rats off a sinking boat. I didn’t blame them. In our business, illness is death to income. I went to Miami to undergo some testing being done by a new doctor named Nancy Klimas. I had blood drawn, underwent testing and was told that I fit a profile of an illness called Chronic Fatigue and Immune Dysfunctional Syndrome...Yuppy flu? That was 23 years ago... My life is almost gone and NO REAL progress on treating/curing this disease has been made. I never believed the public/government could ignore an illness as life-stealing as this one. I was wrong. I can’t get those decades back. I have lost the ability to play with my grandchildren-- something that makes me even more ill. I am the “sick” grandmother, not the one who sews or cooks incredibly… the sick one. I won’t be remembered for my strength, which was at one time remarkable, but my weakness. I won’t be remembered for my laughter because it so seldom happens anymore. I can’t believe that I will die with this illness. I can't believe in 23 years how little progress has been made in the way of curing or even understanding this disease, 23 YEARS? As hard as some are trying, there has still been so little done to ease the suffering caused by ME/CFS, especially becoming bed-bound for such long periods of time. I guess it’s better it doesn’t seem possible, because if I really thought about it, the anger might be too overwhelming to bear. All those years of my life--gone. Nothing but watching my “friends” live REAL lives, all while I lie in bed-- putter around the house on "good days." No exercise in 23 years. No laughter. No socializing. No simply enjoying food or a movie. No real life. Maybe one of the hardest parts of all this is that my me/cfs story does not end with me. Unfortunately, my 32 year-old son was going for his majors in the Air Force when he too, succumbed to this disease. A rising star in many capacities, he was one of the youngest to test for Major, had a congressional nomination to the Air Force Academy and plans to go into space! Quite an adjustment. Dreams of being an astronaut, which he had since age 4, were slowly erased with each doctors visit. The feeling of helplessness created by this disease is extremely difficult, but having to watch your child experience the same symptoms is agonizing. I feel guilty. How did I give this to him? What can I do to make him well? Sadly, I am all too aware of just how few options there are. As a woman with MECFS, it’s difficult, but as the mother of a son with the disease, it's excruciating. Thank you for reading. -Karen Burroughs If you'd like to share you or a loved ones experience with me/cfs, please email me at theothergelpi@gmail.com. Right now, patient voices are one of our strongest assets, and I believe our stories can truly help change the distorted perception and lacking policy regarding this disease. I encourage you to share yours. Otherwise, please sign, share..talk...help us change the conversation about mecfs into something real and true. Sign this petition so people like Karen, her son, and millions of others can at least have an actual chance at getting better and getting their lives back. Right now millions are suffering-- we don't have a real chance. Thanks again yall, until next time... Mary