Study: Most Lyndonville Children Report At Least Mild Improvement
By Mark Giuliucci

Seventeen years ago, an unexplained epidemic struck the small upstate town of Lyndonville, N.Y. More than 200 people developed long-term, severe fatigue and a host of other physical problems. Doctors found no cause for the illness and discovered no cure. To this day, many of those stricken by the mystery ailment still feel the effects.

Now, a follow-up study of 35 children affected during the outbreak confirms that they were suffering from chronic fatigue and immune dysfunction syndrome (CFIDS). The study also says that 80 percent of the children surveyed said they had either fully recovered or had made some improvement. The results of the study were published in the May 2001 issue of the journal Pediatrics.

"There is some good news here," says David S. Bell, MD, FAAP, co-author of the study. But Bell, who cared for all of the children during the outbreak in the 1980s, warns that the results aren't completely positive. Many of the children who reported improvement, he says, have been forced to adapt their lifestyles to deal with lingering fatigue. And a significant percentage of the rest have shown little or no improvement since falling ill.

Bell, Karen Jordan, PhD, and Mary Robinson, MS, sent detailed health questionnaires to the 46 children and adolescents who were stricken during the Lyndonville outbreak between 1984 and 1987. Thirty-five of the children responded, 24 females and 11 males.

As children, all of those who returned the surveys would have met the current guidelines for CFIDS, which had not been created in the 1980s. None of the respondents had ever developed other diseases that would have explained their fatigue. The children were ages 5-18 when they first developed CFIDS symptoms.

Thirteen of the 35 patients who responded to the survey said they "recovered completely and feel entirely well" since first falling ill. Another 15 said they "never recovered completely but feel pretty well." Four said they "recovered somewhat but remain ill," and the other three said they were more ill than they were 10 years ago.

Bell says parents of children with CFIDS should find cause for optimism from the fact that so many of the Lyndonville respondents said they had improved over the years. But he warns that fewer than half of those children claimed to be fully recovered. "The other half have simply learned to adapt," Bell says. "There is a very big difference between the two groups."

Meanwhile, the other 20 percent of respondents are "doing terribly," Bell says. "Their lives have been totally disrupted."

Predicting which children will improve over time is still not possible. But Bell says the survey results found a few factors that may play a role. The most important predictor was the amount of school that the children missed during the first years of their illness. In general, those who missed the most school days tended to fare the worst over time.

This could mean that those who develop severe early onset of CFIDS symptoms could be at higher risk than those whose symptoms worsened over time, Bell says.

Children who showed some improvement during the first three years of their illness also tended to make greater long-term gains than those who stayed the same or got worse during the same period. In addition, those children who developed severe neurological symptoms, such as brain inflammation (encephalitis), during the first year of their illness had poorer outcomes over time.

Bell stresses that these are overall trends, and do not apply in every case. He also says that it remains unknown whether the improvement rates in cluster outbreaks like the one in Lyndonville will differ from the rates in individual, non-outbreak cases.

Finally, Bell says that recovery seems to have little to do with the attending physician's empathy with the patients. Ten of the 35 children surveyed had been patients of Bell for more than 10 years, while the rest had not seen him since the early years of their illness. There was no significant difference in the rates of recovery between the two groups. Bell says this should help refute claims that children with CFIDS complain more about symptoms if they have a sympathetic ear from their doctor.

Overall, 80 percent of the children who responded to the survey said that their illness had little or no effect on their social lives. The other 20 percent reported a moderate to severe impact socially. In general, these reports coincided with the reports of overall recovery rates. Of the 12 children who claimed no social effect, 10 also said they had fully recovered from their CFIDS symptoms.

Reference: David S. Bell, MD, FAAP; Karen Jordan, PhD; and Mary Robinson, MS. "Thirteen-Year Follow-Up of Children and Adolescents With Chronic Fatigue Syndrome." Pediatrics. 2001. 107(5): 994-998.

Copies of this study are available for purchase through The CFIDS Association of America. Please see the Educational Materials Supplement in this issue for details. This study and others also may be obtained through the Association's Web site at www.cfids.org/ecommerce.

Mark Giuliucci is publications editor of The CFIDS Association of America.

"With every year that goes by, I get more confused about it," says David S. Bell, MD, FAAP, the physician who treated most of the 214 people who developed CFIDS from 1984-87. "I think it's safe to say that, at this point, we'll never know what caused it."

Health officials looked at a number of possible causes years ago, from contaminated drinking water to airborne pathogens. Though he has no solid proof, Bell says his "educated guess" is that the outbreak was most likely caused by an infectious agent like a virus or bacteria.

The passage of time has made finding the cause unlikely, Bell says. It's too late to test for sources of infection or other causes, since they have long since disappeared. "All we can do is move forward and find better treatments," he says. "That's what's most important now."