CFS Stuff

Pretty soon I'm gonna add my CFS story, but for now, I'm gonna put some links or articles about it... keep in mind that this page is a work in progress. :) Thanks!

The second part of my story begins in January of 1997. It was "Superbowl Sunday", but I had tickets to go see Miss Saigon. .... to be continued... ;-)

This is an article that Claudia sent to CFS-Y. It's great! :)

UPI Science News CHICAGO, Aug. 4 (UPI) -- Children and adolescents suffering from the mysterious disease called chronic fatigue syndrome have a brighter future than adults with the same diagnosis, new research indicates. The baffling condition, once derided as ``yuppie flu,'' commonly causes sore throat, fever, abdominal pain, headache and impaired cognition. It also causes swollen glands, muscle pain, joint pain, difficulty sleeping and feelings of malaise. Frequently, it so debilitates victims they are unable to work or function in other capacities. And there is neither a known cure nor completely effective medications. Children complain of similar symptoms, but also loss of appetite and diarrhea. But according to a study published in Pediatrics, the journal of the American Academy of Pediatrics, children seem to reach a more normal state than adults diagnosed with the illness, and sooner, usually in one to four years. For adults, it can last a few years or a lifetime. Scientists from the New York University and the Albert Einstein College of Medicine reviewed charts of 58 children and adolescents who previously had been enrolled in a New York hospital chronic fatigue treatment program. The researchers conducted follow-up interviews with families of the children. They found that 95 percent of the former patients were considered to be either cured or improved by their families, one to four years after beginning treatment. That was much better than has been reported for adults in many studies. In the latest study, half of the youths were between the ages of seven and 14, and the other half between 15 and 21. All had been ill for seven to 36 months. At the time of the follow-up, 71 percent of the families interviewed indicated that the medical care they had received for their children had been helpful, and 68 percent felt the psychosocial care had helped, too. The study authors concluded that despite earlier reservations in the medical community about diagnosing chronic fatigue syndrome in pediatric patients, the diagnosis alone can have a positive effect on recovery, because victims no longer feel others think the condition is ``just in their heads.'' Lead author Dr. Leonard Krilov of the New York University School of Medicine in Manhasset, New York, said most patients had a worsening of school performance and a decrease in social activities, and that all reported problems with fatigue, while 74 percent reported chronic headaches. Children, the researchers concluded, can come down with the illness just as adults do, but children seem to have a ``more optimistic outcome."

This is an article that Cori sent to CFS-Y:
CFS and Adolescents By Karen Lang David S. Bell, MD "We've always assumed [in our culture] that if you cope well, your illness will be better, [that] you can cure yourself with a positive attitude," Dr. Bell said. "We were looking for a trend that better coping styles meant less fatigue." The study of 170 PWCs between the ages of 11 and 18 did not reveal such a trend. It found no correlation between positive coping styles and reduced fatigue, or between negative coping styles and greater fatigue. Duration of symptoms ranged from two years to greater than five years. Of the sample, 42% had been ill longer than five years, a finding that substantiates the possibility that a significant number of adolescents with CFS or CFS-like illness may experience a prolonged cycle of illness. 40% of the participants were age 11-12; 34% were 13-14; 15% were 15-16; and 10% were 17-18. Noting that it is possible to assess whether secondary gain, or primary or family emotional disorders are involved in a child's expression of illness, Dr. Bell reported that these factors were ruled out for all of the participants. Dr. Bell illustrated the difference between positive and negative coping styles by comparing the response of two patients to the question, "How are you feeling today?" The patient who is coping well says, "Fine." The one who is not coping well says, "Terrible! I can't do anything anymore, I'm stuck in bed most of the time and I feel awful!" Neither response, Dr. Bell noted, tells anything about the level of fatigue. The study also looked at the relationship between coping strategies and perceived self-confidence. It found no correlation between positive coping styles and higher self-confidence, but there was some connection between negative coping styles and lower self-confidence. There was no apparent relationship between social support and fatigue severity. An important result of this study, Dr. Bell pointed out, is that its findings are atypical of psychiatric or psychosomatic illness and even some physical illnesses, where positive coping mechanisms have been shown to improve the patient's condition. These findings support other evidence that CFS is not a psychiatric disorder. Dr. Bell emphasized that the study does not imply that adaptive coping mechanisms are not useful or valuable in disease management, only that they do not seem to affect fatigue severity.

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