The Centers for Disease Control and Prevention estimates that between 500,000 and a million people in the U.S. have chronic fatigue syndrome. Certain antidepressants and anti-inflammatory drugs have been found effective in managing the symptoms of CFS, but there is no known cure for this debilitating disease.
"You forget the meaning of common words. You are spaciously disoriented, you don't know where you are," Joan explains.
But things have changed significantly for Joan. She's now self-sufficient, and she credits the experimental drug Ampligen for her remarkable turnaround. The drug is now in the final testing stages here in the U.S., and so far researchers like what they see.
Dr. Richard Podell, a chronic fatigue syndrome specialist, says that the drug "seems to correct certain subtle metabolic abnormalities that are seen with people who have CFS."
CFS is more prevalent among women, but it also affects men, and people of all ages and races. The cause of CFS isn't known, but scientists believe it begins with a virus.
"The studies seem to suggest that the people who are more vulnerable are those people that are doing a lot physically, a lot mentally. They are so near the edge that the virus could be the straw the breaks the camels back," Dr. Podell says.
There is no evidence to support that CFS is contagious, as no outbreaks or epidemics have been reported.
For some CFS patients, the exhaustion lasts for just a few months. But for people like Joan who are sick for more than six months, it can take almost a year for the positive effects of Ampligen to kick in.
"Getting rid of dementia, even if Ampligen did nothing else, would be well worth the money, the needle sticks and the commuting," says Joan.
The Ampligen study should be completed in about a year and a half. Then it will have to go through the FDA's approval process, something many CFS sufferers hope will be speedy.