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Chapter 1: a Death in Devizes Chapter 2: One in a Million Notes CHAPTER 1: A DEATH IN DEVIZES 1 David and Dorothy Churchill, interview by the author, Devizes, U.K., October 25, 2001. All subsequent quotes are from this interview unless other- wise noted. 2 D. Bateman et al., “Sporadic Creutzfeldt-Jakob Disease in a 18-Year-Old in the U.K.,” The Lancet 346 (1995): 1155–1156. 3 Robert G. Will et al., “Infectious and Sporadic Prion Diseases,” in Prion Biology and Diseases, ed. Stanley B. Prusiner (Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, 1999), 465–507. CHAPTER 2: ONE IN A MILLION 1 http://www.whonamedit.com/doctor.cfm/91.html (last accessed March 6, 2003). 2 Hans Gerhard Creutzfeldt, “Über eine eigenartige herdförmige Erkrankung des Zentralnervensystems,” Zeitschrift für die gesamte Neurologie und Psychiatrie 57 (1920): 1–18. 3 Hans Gerhard Creutzfeldt, “On a Particular Focal Disease of the Central Nervous System (Preliminary Communication),” transl. E. P. Richardson, Jr., in Neurological Classics in Modern Translation, ed. David A. Rottenberg and Fred H. Hochberg (New York: Hafner Press, 1977), 98. 4 Ibid, 99. 5 Ibid. 6 http://www.whonamedit.com/doctor.cfm/738.html (last accessed March 6, 2003). 7 Hans Gerhard Creutzfeldt, Neurological Classics in Modern Translation, 96. 8 Alfons Jakob, “Concerning a Disorder of the Central Nervous System Clinically Resembling Multiple Sclerosis with Remarkable Anatomic Findings (Spastic Pseudosclerosis),” transl. E. P Richardson, Jr., in Neurological Classics in 239 240 NOTES Modern Translation, ed. David A. Rottenberg and Fred H. Hochberg (New York: Hafner Press, 1977), 116. 9 Ibid, 120. 10 Some researchers favored “Jakob-Creutzfeldt disease” to give due credit to Jakob, who was really the one to characterize and define the illness. 11 Robert G. Will et al., “Infectious and Sporadic Prion Diseases,” in Prion Biology and Diseases, ed. Stanley B. Prusiner (Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, 1999), 465–507. 12 Richard T. Johnson and Clarence J. Gibbs, Jr., “Creutzfeldt-Jakob Disease and Related Transmissible Spongiform Encephalopathies,” New England Journal of Medicine 339 (1998) 27: 1994–2004. 13 Will et al. “Infectious and Sporadic Prion Diseases.” 14 Centers for Disease Control and Prevention, http://www.cdc.gov/nchs/fastats/lcod.htm (last accessed March 6, 2003). 15 Although it may be possible that people of African descent have a naturally lower incidence: African-Americans’ mortality rate from CJD in the U.S. is 38 percent that of white Americans. 16 Will et al., “Infectious and Sporadic Prion Diseases.” 17 Johnson and Gibbs. 18 Robert C. Holman et al.,“Creutzfeldt-Jakob Disease in the United States, 1979–1994,” Emerging Infectious Diseases 2 (1996), 4 (1996): 333–337; Robert V. Gibbons et al., “Creutzfeldt-Jakob Disease in the United States: 1979–1998,” Journal of the American Medical Association 284 (2000) 18: 2322–2323; Lawrence B. Schonberger, presentation at the Cambridge Healthtech Conference on Transmissible Spongiform Encephalopathy, Washington, DC: February 6–7, 2002. 19 Colin L. Masters, and D. Carleton Gajdusek, “The Spectrum of Creutzfeldt- Jakob Disease and the Virus-Induced Subacute Spongiform Encephalopathies,” in Recent Advances in Neuropathology 2, ed. W. T. Smith and J. B. Cavanagh (Edinburgh, U.K.: Churchill Livingstone, 1982), 139. 20 Ibid., 144; Pierluigi Gambetti, personal communication. 21 T. C. Britton et al., “Sporadic Creutzfeldt-Jakob Disease in a 16-Year-Old in the U.K.,” The Lancet 346 (1995): 1155. 22 Stephen J. DeArmond and James W. Ironsides, “Neuropathology of Prion Diseases,” in Prion Biology and Diseases, ed. Stanley B. Prusiner (Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, 1999), 585–652. CHAPTER 3: THE CANNIBALS’ LAUGHING DEATH 1 Shirley Lindenbaum, Kuru Sorcery: Disease and Danger in the New Guinea Highlands (Mountain View, CA: Mayfield Publishing Company, 1979), 20. NOTES 241 2 D. Carleton Gajdusek, “Kuru in the New Guinea Highlands,” in Tropical Neurology, ed. John D. Spillane (London: Oxford University Press, 1973), 379. 3 Lindenbaum, Kuru Sorcery, 20. 4 Vincent D. Zigas, Laughing Death: The Untold Story of Kuru (Clifton, NJ: Humana Press, 1990), 16. Zigas’s romanticized account of events should be taken with a grain of salt. Toward the end of his life, he was suffering from an unknown mental deterioration from which he apparently died in 1983 (there was no autopsy). According to D. Carleton Gajdusek and Shirley Lindenbaum, Zigas seems to have incorporated descriptions about kuru and the Fore writ- ten later by others into his personal account. 5 Ibid., 130–132. 6 Paul Brown, interview by author Bethesda, MD, February 27, 2002. All subse- quent quotes are from this interview unless otherwise noted. 7 Zigas, Laughing Death, 226. 8 D. Carleton Gajdusek autobiography, Nobel Foundation, http://www.nobel.se/medicine/laureates/1976/gajdusek-autobio.html (last accessed March 6, 2003). 9 Ibid. 10 D. Carleton Gajdusek’s interest in children caught up with him on April 4, 1996, after his return to the U.S. from a conference in Geneva. “I met him at the airport,” Paul Brown recalled. “When we got to his house, the FBI sur- rounded us like Indians around a wagon train.” Pistols drawn, officers moved in to arrest the 72-year-old Gajdusek on his Maryland driveway for sexually abusing one of the boys he had brought over from Micronesia. Law enforce- ment authorities had suspected Gajdusek for years—not just because he had brought 56 children, mostly boys, to the U.S., but also because his journal entries from the 1960s detailed, in ways that most anthropologists considered aberrant, the ritualized homosexual practices of the islanders. He described, for instance, how boys would reach into his pocket and try to fondle his penis and how they learned to perform fellatio on adults by seven or eight years of age. Gajdusek eventually pleaded guilty to molesting the boy, who was 15 at the time of the abuse and 23 when he got the Nobelist to incriminate himself in March 1996 over a tapped telephone line. Released from prison on April 27, 1998, after serving a year of his 18-month sentence, Gajdusek immediately left the U.S. for France. 11 Judith Farquhar and D. Carleton Gajdusek (eds.), Kuru: Early Letters and Field- Notes from the Collection of D. Carleton Gajdusek (New York: Raven Press, 1981), 31. 12 Gajdusek autobiography, Nobel Foundation. 13 Farquahar and Gajdusek, Kuru, 10. 14 Ibid., 8. 15 Zigas, Laughing Death, 231. 16 Zigas, 237. 242 NOTES 17 D. Carleton Gajdusek, Correspondence on the History and Original Investigations of Kuru: Smadel–Gajdusek Correspondence, 1955–1958 (Washington, DC: U.S. Department of Health, Education and Welfare, 1976), 50. 18 W. J. Hadlow, “The Scrapie–Kuru Connection: Recollections of How It Came About,” in Prion Diseases in Humans and Animals, ed. Stanley B. Prusiner et al. (New York: Ellis Harwood, 1992), 43. CHAPTER 4: CONNECTING THE HOLES 1 See, for example, Ray Bradley, “Animal Prion Diseases,” in Prion Diseases, ed. John Collinge and Mark S. Palmer (Oxford: Oxford University Press, 1997), 89–129; Linda A. Detwiler, “Scrapie,” Scientific and Technical Review (Rev. Sci.Te c h . Off. Int. Epiz.) 11 (1990) 2: 491–537; Jean-Louis Laplanche et al., “Scrapie, Chronic Wasting Disease, and Transmissible Mink Encephalopathy,” in Prion Biology and Diseases, ed. Stanley B. Prusiner (Cold Spring Harbor, NY: Cold Spring Harbor Laboratory Press, 1999), 393–429. 2 J. G. Leopoldt, Nützliche und auf die Erfahrung gegründete Einleitung zu der Landwirthschaft, fünf Theile (Berlin, Germany: Christian Friedrich Günthern, 1759), 348; quoted in Paul Brown and Raymond Bradley, “1755 and All That: A Historical Primer of Transmissible Spongiform Encephalopathy,” BMJ 317 (1998) 7174: 1688–1692. 3 W. J. Hadlow, “The Scrapie–Kuru Connection: Recollections of How It Came About,” in Prion Diseases in Humans and Animals, ed. Stanley B. Prusiner et al. (New York: Ellis Harwood, 1992), 40. 4 Ibid., 42. 5 Ibid., 43. 6 D. Carleton Gajdusek, “Kuru and Scrapie,” in Prion Diseases in Humans and Animals, ed. Stanley B. Prusiner et al. (New York: Ellis Harwood, 1992), 48. 7 Hadlow, “Scrapie–Kuru,” 44. 8 Ibid. 9 Clarence J. Gibbs, Jr., “Spongiform Encephalopathies—Slow, Latent, and Temperate Virus Infections—in Retrospect,” in Prion Diseases in Humans and Animals, ed. Stanley B. Prusiner et al. (New York: Ellis Harwood, 1992), 54–55. 10 Paul Brown, interview by the author, Bethesda, MD, February 27, 2002. All subsequent quotes are from this interview unless otherwise noted. 11 Gibbs, 56. 12 Ibid., 58–59. 13 Ibid., 59. 14 Ibid. 15 Ibid. 16 D. Carleton Gajdusek, “Kuru in the New Guinea Highlands,” in Tropical Neurology, ed. John D. Spillane (London: Oxford University Press, 1973), 382. NOTES 243 17 Ibid., 379. 18 Gibbs, “Spongiform Encephalopathies,” 59. CHAPTER 5: THE BIRTH OF THE PRION 1 Tikvah Alper, “Photo- and Radiobiology of the Scrapie Agent,” in Prion Diseases of Humans and Animals, ed. Stanley B. Prusiner et al. (New York: Ellis Harwood, 1992), 31. 2 Ibid. 3 Gordon Hunter, “The Search for the Scrapie Agent: 1961–1981,” in Prion Diseases of Humans and Animals, ed. Stanley B. Prusiner et al. (New York: Ellis Harwood, 1992), 25. 4 Ibid. 5 I. H. Pattison and K. M. Jones, “The Possible Nature of the Transmissible Agent of Scrapie,” Veterinary Record 80 (1967): 2–9. 6 J. S. Griffith, “Self-Replication and Scrapie,” Nature 215 (1967): 1043–1044. 7 Hunter, “The Search for the Scrapie Agent,” 26. 8 Stanley B. Prusiner autobiography, Nobel Foundation, http://www.nobel.se/medicine/laureates/1997/prusiner-autobio.html (last accessed March 6, 2003). 9 Ibid. 10 Gary Taubes, “The Name of the Game Is Fame. But Is It Science? Stanley Prusiner, ‘Discoverer’ of Prions,” Discover December 1986: 28–52. 11 Stanley B. Prusiner, “Prions,” Scientific American October 1984: 46–57.
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