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Perception perplexity

Dr. Bell has long criticized doctors who see ME/CFS patients as psychiatric patients, rather than as physically ill. But MDs aren't the only ones with incorrect perceptions.

"For years I’ve been saying that people with CFIDS/ME aren't 'fruitcakes,’” he said. "But this is the one place where they actually are fruitcakes: They tend to be really confused about how sick they are."

The confusion can be profound; if a doctor as experienced as Bell can't define recovery, how can a patient be sure about his or her illness? Bell coined the phrase "health-identity confusion" to denote an inaccurate self-image, the result of "year after year after year of no answer."

The story of one Lyndonville patient illustrated the way doctors contribute to patients’ confusion. In diagnosing this woman, Dr. Bell referred her to three different specialists for evaluation. "One doctor said she had Hodgkin's, and had only a year to live. The second said she had Multiple Sclerosis, and had only 10 years to live." Bell paused, then delivered the kicker: "The third said she was a complete fruitcake and would never die.”

Little wonder, Bell remarked, that many patients will say, "I'm opting out of this system."