Condition at five years predictive?

Bell was asked about diagnosis, often a painfully long process, as too many Association members can attest. "My experience is that anybody who looks like they have CFIDS/ME at 3 months, will be diagnosable at 6 months.”

Once a patient receives a diagnosis, the next logical question—along with what treatment options are available—is, "How long will this thing last?" Bell sees five years as the point at which an individual's prognosis can often be established.

"If someone's condition isn't improving after five years, if things aren't changing, they're probably going to stay there," he said. "If they're really bad off then, their situation will likely become one of those nightmares we've all heard about." Bell has seen patients improve after the five-year mark, but in his practice, dramatic improvements after that point were not common.

While the focus of the talk was on long-term illness, rather than on patients who recovered or improved, Bell spent some time talking about the patients who saw "good results." He said he had not seen anyone recover as a direct result of physical therapy, but cautioned that he had trouble differentiating the effects of exercise from recovery in general.

There are many types of physical therapy. Stretching joints may be important for someone who is developing contractures but, Dr. Bell said, stretching “is not going to increase exertion that much. If you’re talking about an exercise therapy where you are out and jogging around the block, you have to use common sense.” 

Patients must judge for themselves how much exercise they can tolerate (if any), watching carefully for post- exertional malaise. Dr. Bell stated that “Sometimes doctors have no way of assessing this based upon a physical exam.”

Asked whether he'd seen any other approaches that correlated with better results, he said no. "There are lots of people who eat terribly, don't exercise, and generally don't take care of themselves who get well anyway," he said.

He was talking not about treatments, but about personal lifestyles, which—at least in his experience—just didn't seem to make much difference in recovery rates.

Whether ME/CFS is casually contagious (can be spread through kisses, coughs, or sharing kitchen utensils) is a perennial question. With the introduction of a new virus, XMRV, audience members once again asked about contagion. "My personal belief is that the disease could be casually contagious only in the first six weeks," Bell said, "but you don't tend to see people transmitting it to anybody else. Transmission would be extremely unlikely with XMRV, because of the low viral load."