Chronic Fatigue Syndrome Often Not Believed

Chronic Fatigue Syndrome (CFS), also called Chronic Fatigue Immune Dysfunction Syndrome, had Carl Miller of Georgetown, Ohio, and his doctors, completely baffled for a long while. He reads this column in the Georgetown News Democrat.

Said 64-year-old Miller, “I used to drive a tour bus and it was getting really difficult for me to unload and load luggage without getting very worn out. Also, I used to run a lot out on the road and remember running the day the World Trade Center towers were hit. I knew something was going on (with me physically) because I was going halfway out on my run and having to walk back home. Before that I used to run five miles regularly without any problem.”

The fatigue became much more problematic. His doctor thought he was making it up. The verbal exchange with this doctor would so bother and “floor” him that he did not see another doctor for a long time. He said, “I didn’t know why (the doctor) would tell me such a thing. I’ve always tried to be a good person and not lie.”

Eventually, after seeing perhaps a dozen physicians and specialists, and having brain and bone scans only to find nothing, he was diagnosed with CFS after a physician ruled out all other possibilities. He became eligible for disability payments in 2002.

His biggest problem, he said, has been dealing with the many people who believe he has been exaggerating or lying. You don’t look sick, they say. In addition, Miller three years ago was diagnosed with spinal stenosis, which occurred when the spaces between his spine narrowed, causing painful nerve and spinal cord pressure. The spinal stenosis was unrelated to CFS.

He said, “So I spend a lot of time in the house. As for getting up and down, after just walking to the bathroom and back, I need recovery time. It just wears me out. The last couple years, the fatigue has gotten a lot worse and I’ve really gone downhill in terms of being worn out. (With CFS) I also get what they call brain fog and lose my words and say wrong words in places.” He has been prescribed a power wheelchair, but has been unable to procure one.

In terms of advising others with CFS, he said, “Be sure to know your limits and don’t overdue. I try to keep busy mentally.”