On the night of September 9, 2015, I developed upper respiratory symptoms that resembled a mild cold. The following morning I awoke to symptoms of extreme fatigue, body pain, and brain fog. The symptoms went on for six weeks before I had lab testing that revealed a reaction to Epstein Barr virus (mononucleosis). Because I thought that this was a simple case of mono and I had never had mono before, I fully expected the pain and flu-like symptoms to resolve within a month. They never went away. After six months of rest and being unable to hold down a job, I felt well enough to attempt entry level employment; however, I not only was unable to return to my previous level of functioning, but my condition worsened further to the point that I ended up taking two 3-month long FMLA leaves, one in 2017 and 2018. Extensive lab testing, 2 CAT scans, MRIs, X Rays, and cardiac work-up showed nothing wrong. I had a normal thyroid test; normal muscle, kidney, and liver function tests, normal testosterone, negative cancer screening, negative Lyme’s, negative STD, and negative AIDS testing. I attempted neck injections and physical therapy. Both resulted in temporary improvement; however, my condition again worsened after each bout of treatment.
After my second FMLA leave in February of 2018 and six weeks of rest led to a failed second round a physical therapy, I sought further medical evaluation to rule out other factors and my worst suspicions were confirmed. I was diagnosed with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). Since that time I have undergone treatment with Prozac and gabapentin, which has improved my sleep and therefore added some extra ability to function; however, even with this treatment I am at most capable of doing 25% of what I had done before I became ill and then my body becomes unable to sustain the energy to maintain activity. I am wading through the SSDI process and am now facing an appeal at the Federal Level after two years of rejections. Due to this process, my inability to maintain work, and the misunderstanding and neglect of the medical and social world in regard to chronic fatigue syndrome, I also endured a dramatic bout of homelessness from September 2019 into April 2020. In the two years since I've been diagnosed, I have been both floored and infuriated by the ignorance, indifference, and prejudice of the world in regard to people who have ME/CFS and the mistreatment and callousness directed toward not only myself but the ME/CFS Community. This website is my attempt to use emerging science and the power of social media to begin to lead the attempt to fight back and destroy the contempt the world has for people with ME/CFS and those who love and care for them.
Please subscribe to this website and the social media links below and help me start building a community to join me in battle. I will be coming up with ways that you can become more involved.
Copyright 2020 Scott Schneider Productions - all text written and maintained by Scott Schneider.
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