I believe the quotes that are attributed to me in this article leave out at a crucial point as to why I have experienced some improvement in my ME/CFS symptoms and it would be inaccurate for anyone to be left with the impression that this was due to “pacing” or that I have somehow rolled over and accepted this illness.
Like so many patients, I have spent years trying to uncover what had caused my health to deteriorate after experiencing a bad case of upper respiratory flu like symptoms. It was not until I found an infectious disease doctor knowledgeable about this illness that I received an accurate diagnosis. It was also following this diagnosis that I received anti-viral treatment that for the first time provided me with noticeable improvement in my symptoms (such as throbbing muscle pain, searing sore throat pain, migraine headaches, swollen lymph nodes, cognitive impairment in speech, memory and motor processing, light and sound hypersensitivity, gastrointestinal upset and extreme fatigue that is so unrelenting and intense that it feels like the worst case of the flu that you have ever experienced).
Unfortunately, I was not able to sustain the same level of improvement that I first experienced on anti-viral treatment, but the fact that I have not returned to spending every day tethered to my bed has given me and those around me great hope that someday I may find my way back to a more normal life. In the meantime, I do try to pace myself to be able to have a few precious hours each week to let the world know that I am still alive and kicking. It is my hope that a second course of anti-viral treatment and/or other immunomodulator treatment will bring me closer to finding a path to remission from this illness.
Susan Kreutzer (
mecfsneid@gmail.com)