Journal of IiME Volume 4 Issue 1 www.investinme.org An Effort to Influence Medical Textbook Writers (continued) New York, Haworth Medical Press. Rabow, M. W., Hardie, G. E., Fair, J. M., & McPhee, S. J. (2000). End-of-life care content in 50 textbooks from multiple specialties. Journal of the American Medical Association, 283(6), 771. Rabow, M. W., McPhee, S. J., Fair, J. M., & Hardie, G. E. (1999). A failing grade for end-of-life content in textbooks: what is to be done? Journal of Palliative Medicine, 2(2), 153-5. Scott, L. V. and T. G. Dinan (1999). The neuroendocrinology of chronic fatigue syndrome: focus on the hypothalamic-pituitary-adrenal axis. Functional Neurology, 14(1), 3-11. Twemlow, S. W., Bradshaw Jr, S. L., Coyne, L., & Lerma, B. H. (1997). Patterns of utilization of medical care and perceptions of the relationship between doctor and patient with chronic illness including chronic fatigue syndrome. Psychological Reports, 80(2), 643-58. Appendix A I would like to thank you for the important service you have provided to the medical community through compiling and editing the textbook "(Name of text was placed here)". Medical textbooks are crucial to the education of medical students and also serve as reference tools for experienced physicians. I would like to inform you of an issue regarding medical education of chronic fatigue syndrome (CFS). The Center for Community Research at DePaul University has done research on the coverage of CFS provided in medical textbooks, and there is reason for concern. We did a content analysis of 119 medical textbooks from a variety of medical sub-specialties. Out of the 119 textbooks examined, only 48 mentioned CFS. CFS was discussed less than diseases such as Lyme disease and Multiple Sclerosis (MS), which have a lower prevalence than CFS. It is crucial that textbooks contain sufficient information on illnesses, as a professor may use a textbook as a course guide. Additionally, textbooks fill in gaps to inform students of disorders and illnesses which professors may not explicitly describe in the classroom. It is essential that physicians receive sufficient training to identify CFS, as the wrong diagnosis, or lack of a diagnosis can be very damaging to people who suffer from this illness. Research shows that many physicians may lack the Invest in ME (Charity Nr. 1114035) knowledge to properly diagnose and mange CFS. Two studies have found that primary care physicians report feeling a lack of confidence and knowledge in CFS diagnosis and management. 95% of individuals with CFS in one study reported feelings of estrangement. Better education of medical students will help combat this widespread stigma and improve the quality of life and treatment for individuals with CFS. The dearth of information on CFS in textbooks is of course not to blame for this problem, as it is only a reflection of the larger lack of understanding of CFS in society today. However, textbooks that contain in-depth and un-biased coverage on CFS could help to raise awareness about the illness, as textbooks are a key component to medical training. As an attachment to this email, we have provided a model section, providing information on CFS; and it has been endorsed by the International Association of ME/CFS, the scientific organization that organizes conferences and publications on CFS. We hope that you will use this model in considering what to include about CFS in future revisions of your publications. As an author and editor, you can help move the medical community in the right direction and improve the education of today's physicians. Chronic Fatigue Syndrome (Statement endorsed by the International Association of ME/CFS) Chronic fatigue syndrome (CFS) is a multi-systemic illness, which is characterized by debilitating fatigue, as well as other symptoms such as unrefreshing sleep, memory and concentration problems, as well as post-exertional malaise. The total direct and indirect yearly costs in the U.S. due to CFS range from $18.7 to $24 billion dollars.1 Patients with CFS are more functionally impaired than those suffering from type II diabetes mellitus, congestive heart failure, Multiple Sclerosis (MS), and end-stage renal disease.2,3 The term chronic fatigue syndrome was created in 1988 by Holmes et al.4, but this illness had previously been referred to as Myalgic Encephalomyelitis after an outbreak in Britain in 1955. 5 Many patients with this illness feel that the term chronic fatigue syndrome trivializes the seriousness of the illness, and some researchers and patients suggest using a combination of the terms: Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).6 Most scientists use the Fukuda et al. 7 CFS case Page 17/56

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