Humans of ME/CFS

In 1986, I came down with a sudden viral illness that took out my immune and energy systems. Within two weeks, I was unable to walk. I was 24 years old and had been working full-time as a word processor for a law firm in Denver. I found myself completely disabled, bedridden and unable to work.

It was 11 years before I found a correct diagnosis and a doctor to help me, Dr. Daniel Peterson of Sierra Internal Medicine in Incline Village, Nevada. Dr. Peterson is known as a “pioneer” in the field of ME/CFS. Dr. Peterson’s determination has never wavered from pursuing the cause and treatments for this horrible illness. I was one of the first five of his patients to be on the AMP-511 cost-recovery FDA clinical trial and got Ampligen for the first time in December of 1997. I had an incredible and wonderful response to Ampligen and was on it continuously for eight years. I enjoyed increased energy and brain clarity and that allowed me to care for my family and advocate for fellow patients. I have never had any side effects from the drug.

Ampligen increased my ability to eradicate viruses. I went from not being able to walk up the stairs to being able to exercise for 19 minutes on the treadmill. The joy that even a small improvement can give a person, to be able to do household tasks or get out of the house and use my body to take walks, is something that many patients do not have. The quality of life of a patient with this horrible illness is so difficult not to care for yourself and have to endure severe pain in muscles and nerves, being too exhausted to even take a shower or lift my arms to fix my hair. The suffering is immense. Many patients have to lie in bed for 18 hours a day, as I did before Ampligen, needing care and not having a life of their own. Many patients have lost all friends and family.

Having any help is something to be grateful for. I only had that chance because of Ampligen. I became an advocate for ME/CFS. I took bike rides with my kids and was the mother I had always dreamed of being. We hiked, we biked, and I attended every baseball game and school performance and volunteered in their classrooms. It was like rising from the dead.

I am burdened to watch the suffering of fellow patients and to see the heartbreak of many people that take their own life because they can no longer tolerate the years or decades of suffering and have no treatments or hope. There are no approved therapies for this illness and only one drug (Ampligen) currently in clinical trials, so I urge you to approve Ampligen in order to give others the hope and the chance to get well.