Going downhill?

The findings of the 13-year and 25-year surveys were similar. With the exception of those who had recovered, however, no one seemed totally okay this time around.

Forty percent (40%) had essentially no symptoms and apparently normal activity, but they were not as well as controls. Among the 20% who remained disabled, many experienced increasing debility over time.

The remaining 40% (the remitters) still had symptoms, but their activity level was close to normal; that sounds like a good outcome, but in fact many ultimately experienced a return of symptoms or an erosion in activity level.

Dr. Bell called this aspect of his analysis "worrisome" (a patient might call it depressing). Many long-term patients not only didn't improve, but actually seemed to worsen over time.

That was true both of the sickest people, who were already disabled, and many who were recovering. "The bottom line is that people who don't fully recover seem to be getting gradually worse, and that makes me nervous,” Bell told a nervous audience.

That a person with a chronic illness could grow even more enervated was one disturbing prospect. That many people don't understand how sick they are was another one.

Dr. Bell gave the example of a mother "who thinks staying at home is her choice. She seems to believe she's basically lazy, which she isn't. But by not trying to enter the workforce, she doesn't have to deal with a lot of issues, including the disability question."

Bell said that some people simply denied they had symptoms, and that others chose to think they were hypochondriacs, rather than acknowledging they were sick.

While a good percentage of those in the Lyndonville study did recover for good, the continuing illness and vulnerability of the others raise vexing questions.

Is this group typical of all ME/CFS patients? It's important to keep in mind that these patients may differ from others in many ways beyond the fact that they got ill as kids; they lived in a small, rural town that experienced a local cluster outbreak in the mid-'80s, one whose triggers remain unknown.