Adams said she wishes it was so black and white. It's hard to predict when she'll be feeling well enough to venture outside, she said, or when she'll feel so exhausted that walking to her own bathroom will cause her heart palpitations and weakness.
Because so many doctors told Heather Sparrow, a 24-year-old resident of Farmington, Maine, that nothing was wrong with her, self-doubt began to set in.
"I went through five different doctors and it took ruling out everything," said Sparrow. "It got to a point of thinking, 'OK, is this is my head?'"
Desperate for answers, Sparrow actually went to a therapist to find out if the symptoms were her actually "in her head."
The therapist told her she was fine, but her symptoms worsened.
"I knew that a 24-year-old shouldn't feel like a 94-year old," she said. "I felt really alone. No one knew what I was feeling," she said.
In the study, published in the August issue of journal of Psychotherapy and Psychosomatics, study authors examined more than 500 patients from Georgia. More than 100 participants had been diagnosed with CFS, 264 participants had unexplained fatigue without CFS and another 124 healthy participants made up the control group.
Investigators administered the Personality Diagnostic Questionnaire, a survey used by health professionals to screen clients for various personality disorders. Study authors said that 29 percent of participants with CFS had at least one personality disorder, compared with 28 percent of the non-CFS patients and 7 percent of the control group.
"A lot of people cried foul when this study came out, and since then, there has been rigorous debate," said Dr. Nancy Klimas, a professor of medicine, psychology, microbiology and immunology at the University of Miami Miller School of Medicine. "My reaction from my own clinical experience is: no, I don't believe that. My patients tend not to have those [personality] issues."
Klimas explained that extensive scientific research shows that CFS is similar to an autoimmune disorder.
"It's like we're getting slammed back to the 1980s with this article talking about personality disorders and disregarding all the scientific research that has taken place since then," continued Klimas.
Dr. Anthony Komaroff, the Simcox-Clifford-Higby professor of medicine at Harvard Medical School and editor-in-chief of Harvard Health Publications, said CFS first gain substantial attention in the mid-1980s. Komaroff said many doctors thought CFS to be a psychiatric condition.
"It was a reasonable possibility, but over the course of 25 years, there are literally thousands of peer-reviewed papers showing things you can measure in patients that are different from healthy people," said Komaroff. "There is abundant evidence showing that there are objective things to measure that people aren't just imagining being there. There is an underlying biological process."
"I feel bad about this study because these poor patients get nothing but attitude, they're patronized and have a poor standard of care," said Klimas. "It's just not right. They're terribly ill and they deserve better than that. "