Journal of IiME Volume 5 Issue 1 (May 2011) PRESENTERS at the 6th INVEST in ME INTERNATIONAL ME/CFS CONFERENCE Dr. David Bell Dr. David Bell graduated from Harvard College and gained an MD degree at Boston University. Post doctoral training in paediatrics was completed with subspecialty training in Paediatric Behaviour and Developmental Disorders. In 1978 he began work at the University of Rochester and then began a private practice in the town of Lyndonville, New York. In 1985 nearly 220 persons became ill with an illness subsequently called chronic fatigue syndrome in the communities surrounding Lyndonville, New York. This illness cluster began a study of the illness which continues today. Dr. David Bell is the author or co-author of numerous scientific papers on CFS, and, in 2003 was named Chairman of the Advisory Committee for Chronic Fatigue Syndrome of the Department of Health and Human Services. Publications include A Disease of A Thousand Names, (1988) and The Doctor's Guide to Chronic Fatigue Syndrome, (1990). Dr. Bell is currently performing ME/CFS research into the XMRV retrovirus. Abstract: Twenty five Year Follow-up of Adolescent Subjects with ME David S. Bell MD, FAAP; State University of New York at Buffalo David E. Bell MPH; Department of Anthropology, State University of New York at Buffalo Contact Information: dsbellmd@Yahoo.com From 1984 until 1987 an apparent outbreak of Myalgic Encephalomyelitis (ME) occurred in New York State, in a small rural area between Rochester and Buffalo. Two hundred ten persons (sixty one children) were identified during this period, and have been followed for the ensuing twenty-five years. Diagnostic criteria for this outbreak were published in 19881 prior to publication of the CDC criteria2; in retrospect this outbreak would fulfil current criteria for ME or for chronic fatigue syndrome (CFS). Early papers showed no connection with Epstein Barr virus infection3, and similarity with Primary Juvenile Fibromyalgia Syndrome4. An epidemiologic study showed increased incidence within families and association with drinking unpasteurized milk, this latter finding remaining unexplained5. In 1995 a paper documented the health of the adolescent-onset subjects 13 years after onset6. In this study, twenty percent were disabled and remained very ill, with the most predictive factor being the severity of illness at onset. The remaining eighty percent considered themselves either "much better" or "recovered". Half of these considered themselves entirely well and the other half had mild to moderate symptoms but were functioning fairly well. This study, published in 1995 helped foster the incorrect conclusion that children with ME recovered at a very high rate. In the current study emphasis was placed upon disability instruments, thus preventing comparison to the 1995 study. Three subjects had developed malignancy (thyroid cancer, cancer of the cervix, and acute myelocytic leukemia) and were not included in the present study (10.7% of respondents). 25 remaining subjects were the subjects of this study. Instruments used included the SF-36, Pittsburg Sleep Questionnaire, McGill Pain Questionnaire, Bell Ability Scale, Visual Analog Scores for 7 symptoms, Number of Hours of Upright Activity Scale, and the Fisk Fatigue Impact Scale. Two subjects (2/25 or 8%) had scores on these instruments that were close to control scores and Continued page 49 Invest in ME (Charity Nr. 1114035) www.investinme.org Page 48/58

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