Abstract
This paper explores an illness, chronic fatigue syndrome, that is ambiguous in nature and has engendered problematic, stigmatizing societal responses to it. In addition, it offers research strategies to prevent the stigmatization caused by biases and unexamined assumptions about the nature and likely etiology of this disorder. In addition, it offers research strategies to prevent stigmatization caused by biases and unexamined assumptions. In the area of chronic fatigue syndrome (CFS), key decisions regarding the name, case definition, epidemiology and treatment were made many years ago within a sociopolitical context in which CFS was assumed to be a psychologically-based problem (Friedberg & Jason, 1998). In part, some of the decisions may have been due to the predominance of female patients with this illness, whose medical complaints have historically been discredited by the predominantly male establishment ([Richman & Jason, in press; Richman, Jason, Taylor, & Jahn, 2000). Many physicians and other professionals have continued to believe that most individuals with this syndrome have a predominant psychiatric illness. Many CFS activists have argued that the current name contributes to the invalidation and stigmatization process. Due to the controversy surrounding the name, etiology, and diagnosis of chronic fatigue syndrome, people with the illness frequently face disbelieving attitudes from their doctors, family and/or friends, and many experience profound losses in their support systems ([Jason et al., 1997).
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References
American Psychiatric Association. (1994). Diagnostic and statistical manual of mental disorders (4th ed.). Washington, DC: Author.
Burns, R. (1998). Responses for CFS name survey two. http://www.cais.net/cfs-news/responses-2.htm
Cantwell, D. P. (1996). Classification of child and adolescent psychopathology. Journal of Child Psychology and Psychiatry, 37, 3–12.
David, A. S., Wessely, S., & Pelosi, A. J. (1991). Chronic fatigue syndrome: Signs of a new approach. British Journal of Hospital Medicine, 45, 158–163.
Deale, A., Chalder, T., & Wessely, S. (1998). Illness beliefs and treatment outcome in chronic fatigue syndrome. Journal of Psychosomatic Research, 45, 77–83.
Dutton, D. B. (1986). Social class, health and illness. In L. Aiken & D. Mechanic (Eds.), Applications of social science to clinical medicine, and health policy. (pp. 31–62). New Brunswick, NJ: Rutgers University Press.
Endicott, J. & Spitzer, R. L. (1977, May). A diagnostic interview: The schedule for affective disorders and schizophrenia. Paper presented at the American Psychiatric Association, Toronto, Canada.
Feighner, J. P., Robins, E., Guze, S. B., Woodruff, R. A., Winokur, G., & Munoz, R. (1972). Diagnostic criteria for use in psychiatric research. Archives of General Psychiatry, 26, 57–63.
Friedberg, F. & Jason, L. A. (1998). Understanding chronic fatigue syndrome: An empirical guide to assessment and treatment. Washington, DC: American Psychological Association.
Friedberg, F. & Krupp, L. B. (1994). A comparison of cognitive behavioral treatment for chronic fatigue syndrome and primary depression. Clinical Infectious Diseases, 18, S105–S110.
Fukuda, K., Straus, S. E., Hickie, I., Sharpe, M. C., Dobbins, J. G., & Komaroff, A. (1994). The Chronic Fatigue Syndrome: A comprehensive approach to its definition and study. Annals of Internal Medicine, 121, 953–959.
Gilbert, D. T., Fiske, S. T., & Lindzey, G. (1998). Social Stigma. Handbook of Social Psychology, Vol. 2 New York, NY: Oxford University Press.
Gunn, W. J., Connell, D. B., & Randall, B. (1993). Epidemiology of chronic fatigue syndrome: The Centers-for-Disease-Control study. In B. R. Bock & J. Whelan (Eds.), Chronic Fatigue Syndrome. (pp. 83–101). New York: John Wiley & Sons.
Hoh, D. (1999). Why not just call it M.E.? The CIF1DS Chronicle, 12, 9.
Hoh, D. (1997). Rename it? Debate Centers on timing, choices for a new name. CFIDS Chronicle, 10, 7–9.
Holmes, G. P., Kaplan, J. E., Gantz, N. M., Komaroff, A. L., Schonberger, L. B., Strauss, S. S., Jones, J. F., Dubois, R. E., Cunningham-Rudles, C., Pahwa, S., Tosato, G., Zegans, L. S., Purtilo, D. T., Brown, W., Schooley, R. T., & Brus, I. (1988). Chronic Fatigue Syndrome: A working case definition. Annals of Internal Medicine, 108, 387–389.
Jason, L. A., Fitzgibbon, G., Taylor, S. L., Johnson, S., & Salina, D. (1993). Strategies in identifying people with Chronic Fatigue Syndrome. Journal of Community Psychology, 21, 339–344.
Jason, L. A., Fitzgibbon, G., Taylor, R. R., Taylor, S., Wagner, L., Johnson, S., Richmond, G. W., Papernik, M., Plioplys, A. V., Plioplys, S., Lipkin, D., & Ferrari, J. (1993). The prevalence of Chronic Fatigue Syndrome: A review of efforts—past and present. The CFIDS Chronicle, Summer, 24–29.
Jason, L. A., King, C. P., Richman, J. A., Taylor, R. R., Torres, S. R., & Song, S. (1999). U.S. case definition of chronic fatigue syndrome: Diagnostic and theoretical issues. The Journal of Chronic Fatigue Syndrome, 5, 3/4, 3–33.
Jason, L. A., Kolak, A. M., Cantillon, D., Purnell, T., Camacho, J. M., & Lerman, A. (In press). Disability as the lens for new perspectives on community interventions. Journal of Prevention and Intervention in the Community, 21, 35–52.
Jason, L. A., Melrose, H., Lerman, A., Burroughs, V., Lewis, K., King, C. P., & Frankenberry, E. L. (1999). Managing chronic fatigue syndrome: A case study. AAOHN Journal, 47, 17–21.
Jason, L. A., Richman, J. A., Friedberg, F, Wagner, L., Taylor, R., & Jordan, K.M. (1997). Politics, science, and the emergence of a new disease: The case of Chronic Fatigue Syndrome. American Psychologist, 52, 973–983.
Jason, L. A., Richman, J. A., Rademaker, A. W., Jordan, K. M., Plioplys, A. V., Taylor, R., McCready, W., Huang, C, & Plioplys, S. (1999). A community-based study of chronic fatigue syndrome. Archives of Internal Medicine, 159, 2129–2137.
Jason, L. A., Taylor, R. R., Plioplys, S., Stepanek, Z., & Shlaes, J. (in press). Evaluating Attributions for an Illness based upon the Name: Chronic FatigueSyndrome, Myalgic Encephalopathy and Florence Nightingale Disease. American Journal of Community Psychology.
Jason, L. A., Taylor, R. R., Wagner, L., Holden, J., Ferrari, J. R., Plioplys, A.V., Plioplys, S., Lipkin, D., & Papernik, M. (1995). Estimating rates of Chronic Fatigue Syndrome from a community based sample: A pilot study. American Journal of Community Psychology 23, 557–568.
Jason, L. A., Wagner, L., Rosenthal, S., Goodlatte, J., Lipkin, D., Papernik, M., Plioplys, S., & Plioplys, A.V. (1998). Estimating the prevalence of chronic fatigue syndrome among nurses. The American Journal of Medicine, 105(3A), 91S–93S.
Katon, W. & Russo, J. (1992). Chronic Fatigue Syndrome criteria. A critique of the requirement for multiple physical complaints. Archives of Internal Medicine, 152, 1604–1609.
King, C. P., Jason, L. A., Frankenberry, E. L., & Jordan, K. M. (1997). Think inside the envelope. CFIDS Chronicle, Fall, 10–14.
Komaroff, A. L., Fagioli, L. R., Geiger, A. M., Doolittle, T. H., Lee, J., Kornish, R. J., Gleit, M. A., & Guerriero, R. T. (1996). An examination of the working case definition of Chronic Fatigue Syndrome. The American Journal of Medicine, 100, 56–64.
Leckliter, I. N. & Matarazzo, J. D. (1994). Diagnosis and classification. In V. B. Van Hasselt & M. Hersen (Eds.), Advanced Abnormal Psychology, (pp. 3–18). New York: Plenum Press.
Lloyd, A. R., Hickie, I., Boughton, C. R., Spencer, O., & Wakefield, D. (1990). Prevalence of chronic fatigue syndrome in an Australian population. The Medical Journal of Australia, 153, 522–528.
Matarazzo, J. (1983). The reliability of psychiatric and psychological diagnosis. In J. Hooley, J. Neale, & G. Davidson (Eds.), Readings in abnormal psychology (pp. 36–65). New York: John Wiley & Sons.
Murray T. J. (1995). The psychosocial aspects of multiple sclerosis. Neurologic Clinics, 13, 197–223.
Name-Change Survey Results (1997). http://www.cfids.org/chronicle/97summer/survey.html.
Osgood, C. & Osgood, Z. (1998, Nov. 15). Meet Zac. He’s really sick of being tired: A mysterious ailment steals two years of childhood and counting. Chicago Tribune, (Magazine section), 26.
Pesek, J. R., Jason, L. A., & Taylor, R. R. (2000). An empirical investigation of the envelope theory. Journal of Human Behavior in the Social Environment, 3, 59–77.
Reyes, M., Gary, Jr., H. E., Dobbins, J. G., Randall, B., Steele, L., Fukuda, K., Holmes, G. P.,Connell, D. G., Mawle, A. C., Schmid, D. S., Stewart, J. A., Schonberger, L. B., Gunn, W. J., & Reeves, W. C. (1997, Feb. 21). Descriptive Epidemiology of Chronic Fatigue Syndrome: CDC Surveillance in Four Cities. Morbidity and Mortality Weekly Report Surveillance Summaries, 46 (No. SS-2) 1–13.
Reyes, M., Nisenbaum, R., Stewart, G., & Reeves, W. C. (1998, Oct.) Update: Wichita population-based study of fatiguing illness. In L. A. Jason & W. Reeves (Chairpersons), New insights into the epidemiology of CFS. Symposium presented at the American Association for Chronic Fatigue Syndrome Conference. Cambridge, MA.
Richman, J. A., Flaherty, J. A., & Rospenda, K. M. (1994). Chronic Fatigue Syndrome: Have flawed assumptions derived from treatment-based studies? American Journal of Public Health, 84, 282–284.
Richman, J. A. & Jason, L. A. (2001). Gender biases underlying the social construction of illness states: The case of chronic fatigue syndrome. Current Sociology, 49, 15–29.
Richman, J. A., Jason, L. A., Taylor, R. R., & Jahn, S. C. (2000). Feminist perspectives on the social construction of illness states. Health Care for Women International, 22, 173–185.
Robins, L. N. & Regier, D. A. (1991). Psychiatric disorders in America: The ECA study. New York: Free Press.
Sharpe, M. (1998). Psychiatric morbidity and CFS: Summary of the state of our knowledge. Paper presented at symposium conducted at the Fourth International Research, Clinical, and Patient Conference of the American Association for Chronic Fatigue Syndrome, Cambridge, Massachusetts.
Sharpe, M., Hawton, K., Simkin, S., Surawy, C., Hackmann, A., Klimes, I., Peto, T., Warrell, D., & Seagroatt, V. (1996). Cognitive behaviour therapy for the chronic fatigue syndrome: A randomized controlled trial. British Medical Journal, 312, 22–26.
Shlaes, J. L., Jason, L. A., & Ferrari, J. (1999). The development of the Chronic Fatigue Syndrome Attitudes Test: A psychometric analysis. Evaluation and the Health Professions, 22, 442–465.
Spitzer, R. L., Williams, J. B. W., & Gibbon, M. et al (1988). Structural clinical interview for DSM-III-R. Biometrics Research: New York State Psychiatric Institute.
Steele, L., Dobbins, J. G., Fukuda, K., Reyes, M., Randall, B., Koppelman, M., & Reeves, W. C. (1998). The epidemiology of chronic fatigue in San Francisco. The American Journal of Medicine, I05(3A), 83S–90S.
Straus, S. (1992). Defining the Chronic Fatigue Syndrome. Archives of Internal Medicine, 152, 1559–1570.
Taylor, R. R. & Jason, L. A. (1998). Comparing the DIS with the SCID: Chronic fatigue syndrome and psychiatric comorbidity. Psychology and Health: The International Review of Health Psychology, 13, 1087–1104.
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Jason, L.A., Taylor, R.R., Richman, J.A. (2002). The Role of Science and Advocacy Regarding a Chronic Health Condition. In: Ottati, V.C., et al. The Social Psychology of Politics. Social Psychological Applications to Social Issues. Springer, Boston, MA. https://doi.org/10.1007/978-1-4615-0569-3_8
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DOI: https://doi.org/10.1007/978-1-4615-0569-3_8
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