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What is recovery?

How recovery should or could be defined—by patients, by doctors, by society—has still not been resolved in ME/CFS, Bell said. "Is recovery the [total] absence of symptoms and a return to [entirely] normal function?" he asked, pointing out that many patients learn to deal with their limitations so well that they may not be perceived as ill.

The 40% of patients who weren't totally better often led what seemed to be normal lives, but "they had to be careful," Bell said. If they worked or exercised particularly hard, they had to allow themselves recovery time; using a common coping technique, they also tailored their calendars to avoid scheduling too many activities back-to-back. They couldn't work all day and then party at night, the way those who had recovered could.

The issue of recovery is multi-layered. There is no gold-standard lab test, as there are with other illnesses, to establish the absence (or presence) of ME/CFS. And people with chronic symptoms inevitably adapt to them; patients who cope effectively may inadvertently mask how ill they are, even to themselves. The problem is deepened by how well most patients look, and complicated further by the way many individuals, particularly medical professionals, continue to dismiss the reality of the illness.