Prime of life, rising incapacity

The trend toward "rising incapacity" in this study caused Dr. Bell to ruminate on how the illness could affect people during what should be the best years of their lives—which ME/CFS does already.

"At 40," he said, "you should be at the top of your profession, thinking, ‘Life is good.'  At 60, you should be able to retire and to travel." Instead, many people in this group who became sick as children remained ill into middle age, with no indication they would enjoy better health as they got older.

Even those who were already disabled faced the prospect of even worse health.

An interesting side note: To complete this research, Dr. Bell contacted patients who had left the Lyndonville area, and his practice, at some point after their diagnosis and early treatment.

"When I called them, I asked, 'Have you told your current doctor that you have this illness?'  A lot of them said something like, 'I'm not going to subject myself to that!" 

This anecdote lent support to Bell's contention that many patients ultimately decide to avoid the health-care system altogether.