Origin of the 10+ study

The 10+ study was the brainchild of Maggie McKenzie and Rob Fontanetta. They walked out of the ME/CFS international research meeting in Albany, NY in 1992 and decided that they had heard one time too many the then-prevalent myth that most ME/CFS patients recovered before five years were up. Both long-term patients themselves, they conceived the notion of the study, and without funding, set out trying to contact people with ME/CFS who had been ill for more than ten years. Eventually long-term patients Fred Friedberg and I joined the team.

The final study had useable responses from 258 patients who had had ME/CFS for more than 10 years (with a range of 10-59 years and median duration 16 years), patients with ME/CFS less than seven years (with a range of 1-7 years and median duration of 3 years), and 179 "healthy" spouses, significant others and friends (27 of whom [15.1 %] met the 1994 Centers of Disease and Control Prevention (CDC) definition of CFS on paper, at least, but in other portions of the study did not indicate the level of impairment shown by the ME/CFS patients. So we kept them in the "healthy" group).