100 “kidney failure”: Criona Wilson, “The Story of Sophia and ME,” Invest in ME, www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm.
101 “didn’t always work”: Kelvin Lord, “Interview with Dr. Lapp—A Pioneer and Patriarch,” October 1, 2010, http://ampligen-treatment.blogspot.mx/2010/10/interview-with-dr-lapp-pioneer-and.html.
101 “National Institutes of Health”: “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC),” National Institutes of Health, February 10, 2016, https://report.nih.gov/categorical_spending.aspx.
CHAPTER 9
108 “how to behave in public”: These instructions are called Training Levels, and they’re amazing: http://sue-eh.ca/.
CHAPTER 10
115 “was going on”: Julie Rehmeyer, “Stolen Notebooks and a Biochemist in Chains,” Slate, December 2, 2011, www.slate.com/articles/health_and_science/medical_examiner/2011/12/judy_mikovits_in_prison_what_does_it_mean_for_research_on_chronic_fatigue_syndrome_.html.
115 “Osler’s Web”: Hillary Johnson, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, 1st ed. (New York: Crown, 1996).
116 “reported in her book”: Hillary Johnson, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, 1st ed. (New York: Crown, 1996): 140.
117 “even vaguely like it”: Ibid., 135.
117 “twenty-nine years old”: Ibid., 154.
118 “London in 1955; and more”: Nathaniel C. Briggs and Paul H. Levine, “A comparative review of systemic and neurological symptomatology in 12 outbreaks collectively described as chronic fatigue syndrome, epidemic neuromyasthenia, and myalgic encephalomyelitis,” Clinical Infectious Disease 18, supplement 1 (1994): S32–42.
118 “getting more active”: S. Wessely, A. David, S. Butler, and T. Chalder, “Management of chronic (post-viral) fatigue syndrome,” Journal of the Royal College of General Practitioners 39, no. 318 (January 1989): 26–29.
119 “misrepresent the data”: Hillary Johnson, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, 1st ed. (New York: Crown, 1996): 319.
119 “definition of the disease”: William C. Reeves, et al., “Chronic Fatigue Syndrome—A clinically empirical approach to its definition and study,” BMC Medicine 3 (2005): 19. doi: 10.1186/1741-7015-3-19.
119 “as having ME/CFS”: Leonard A. Jason, Nicole Porter, Molly Brown, Abigail Brown, and Meredyth Evans, “A Constructive Debate with the CDC on the Empirical Case Definition of Chronic Fatigue Syndrome,” Journal of Disability Policy Studies 20, no. 4 (2010): 251–56.
119 “money to other diseases”: United States General Accounting Office, “Chronic Fatigue Syndrome: CDC and NIH Research Activities Are Diverse, but Agency Coordination Is Limited,” Report to the Honorable Harry Reid, US Senate, June 2000, www.gao.gov/new.items/he00098.pdf.
119 “General Accounting Office”: Hillary Johnson, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, 1st ed. (New York: Crown, 1996): 483, 587, and 591.
United States General Accounting Office, “Chronic Fatigue Syndrome: CDC and NIH Research Activities Are Diverse, but Agency Coordination Is Limited,” Report to the Honorable Harry Reid, US Senate, June 2000, www.gao.gov/new.items/he00098.pdf.
120 “$5 million a year on ME/CFS research”: “Estimates of Funding for Various Research, Condition, and Disease Categories (RCDC),” National Institutes of Health, February 10, 2016, https://report.nih.gov/categorical_spending.aspx.
122 “the finding in Science”: Vincent C. Lombardi, et al., “Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome,” Science 326, no. 5952 (October 2009): 585–89.
123 “A Wired article”: John Timmer, “How a Collapsing Scientific Hypothesis Ended in an Arrest,” Wired, November 30, 2011, www.wired.com/2011/11/xmrv-lawsuit-arrest/.
CHAPTER 16
192 “undergo these treatments”: Scott Gavura, “Ask the (Science-Based) Pharmacist: What are the benefits of coffee enemas?” Science-Based Medicine, July 11, 2013, https://sciencebasedmedicine.org/ask-the-science-based-pharmacist-what-are-the-benefits-of-coffee-enemas/.
CHAPTER 18
215 “story on assignment”: Julie Rehmeyer, “Fatal Cancer Threatens Tasmanian Devil Populations,” Discover, March 31, 2014, http://discovermagazine.com/2014/may/13-the-immortal-devil.
CHAPTER 19
228 “to an unclean place”: Leviticus 14:45.
228 “moldy wine cellar”: Alex Sakula, “Sir John Floyer’s A Treatise of the Asthma (1698),” Thorax 39, no. 4 (April 1984): 248–54.
229 “infested the straw”: J. D. Miller, T. G. Rand, and B. B. Jarvis, “Stachybotrys chartarum: cause of human disease or media darling?” Medical Mycology 41, no. 4 (August 2003): 271–91.
V. G. Drobotko, “Stachybotryotoxicosis: A New Disease of Horses and Humans,” American Review of Soviet Medicine 2, no. 3 (1945): 238–42.
229 “$1.4 billion per year”: De-Wei Li, ed., Biology of Microfungi (Switzerland: Springer International Publishing AG): 495–524.
229 “death within minutes”: George P. Shultz, “Chemical Warfare in Southeast Asia and Afghanistan: An Update,” United States Department of State Special Report No. 104, November 1982.
229 “in the late 1980s”: Zygmunt F. Dembek, ed., USAMRIID’s Medical Management of Biological Casualties Handbook, 7th ed. (Washington, DC: US Government Printing Office, 2011): 8.
230 “Baby-Killing Fungus”: July 31, 1997
231 “an anonymous panel”: “Reports of Members of the CDC External Expert Panel on Acute Idiopathic Pulmonary Hemorrhage in Infants: A Synthesis,” Centers for Disease Control and Prevention, December 1999, www.cdc.gov/mold/pdfs/aiphi_report.pdf.
231 “Carpet Monsters and Killer Spores: A Natural History of Toxic Mold”: Nicholas P. Money, Carpet Monsters and Killer Spores: A Natural History of Toxic Mold (London: Oxford University Press, 2004). I highly recommend this book despite its rather overheated title—it manages to simultaneously be scientifically sober and quite entertaining.
231 “want to throw up”: Lisa Belkin, “Haunted by Mold,” New York Times, August 12, 2001, www.nytimes.com/2001/08/12/magazine/haunted-by-mold.html.
232 “it handled 15,000”: Jordan Smith, “The ‘Mold Queen’ Fights Back: The woman the insurance companies love to hate says they ain’t seen nothin’ yet,” Austin Chronicle, March 21, 2003, www.austinchronicle.com/news/2003-03-21/150675/.
232 “cost $275 billion”: James R. Copland, “Asbestos,” Point of Law, May 21, 2004, www.pointoflaw.com/asbestos/overview.php.
232 “protecting industry from mold claims”: W. Stephen Benesh, “Life after Ballard: Mold Litigation in the New Millennium,” FDCC Quarterly 56, no. 4 (2006): 525–44.
232 “from an official statement”: B. D. Hardin, B. J. Kelman, and A. Saxon, “Adverse human health effects associated with molds in the indoor environment,” Journal of Occupational and Environmental Medicine 45, no. 5 (May 2003): 470–78.
233 “unsupported by actual scientific study”: Cliff Hutchinson and Robert Powell, “A New Plague–Mold Litigation: How Junk Science and Hysteria Built an Industry,” paper commissioned by the US Chamber Institute for Legal Reform and the Center for Legal Policy at The Manhattan Institute, July 17, 2003, www.uschamber.com/sites/default/files/legacy/press/ilr_mold.pdf.
234 “water-damaged buildings”: D. Mudarri and W. J. Fisk, “Public health and economic impact of dampness and mold,” Indoor Air 17, no. 3 (June 2007): 226–35.
234 “meddling scientists down in Ohio”: Nicholas P. Money, Carpet Monsters and Killer Spores: A Natural History of Toxic Mold (London: Oxford University Press, 2004).
234 “large insurance company”: “Biography: Jeffery P. Koplan, MD, MPH: Vice President for Global Health,” Emory University Woodruff Health Sciences Center, http://whsc.emory.edu/home/about/leadership/bio-jeffrey-koplan.html.
234 “respiratory dange
rs of mold in 2016”: The May and June 2016 issues of the Journal of Allergy and Clinical Immunology contain a series of articles from the AAAAI panel on environmental allergens.
CHAPTER 20
238 “than intact spores”: Tiina Reponen, et al., “Fungal Fragments in Moldy Houses: A Field Study in Homes in New Orleans and Southern Ohio,” Atmospheric Environment 41, no. 37 (December 2007): 8140–49.
239 “without known mold exposure”: K. H. Kilburn, “Neurobehavioral and pulmonary impairment in 105 adults with indoor exposure to molds compared to 100 exposed to chemicals,” Toxicology & Industrial Health 25, no. 9-10 (October-November 2009): 681–92.
239 “controlling for other factors”: W. Jedrychowski, et al., “Cognitive function of 6-year-old children exposed to mold-contaminated homes in early postnatal period. Prospective birth cohort study in Poland,” Physiology & Behavior 104, no. 5 (October 2011): 989–95. doi: 10.1016/j.physbeh.2011.06.019.
239 “linked to diabetes”: Salynn Boyles, “Air Pollution Linked to Risk of Diabetes: Study Suggests a Diabetes Risk Even at ‘Acceptable’ Exposure Levels,” WebMD, October 1, 2010, www.webmd.com/diabetes/news/20101001/air-pollution-linked-to-diabetes-risk.
239 “heart disease”: Ibid.
239 “and dementia”: Clayton Aldern, “Meet the scientist connecting the dots between air pollution and dementia,” Grist, February 17, 2016, http://grist.org/climate-energy/meet-the-scientist-connecting-the-dots-between-air-pollution-and-dementia/.
240 “20 micrograms at once”: S. A. Carey, et al., “Satratoxin-G from the black mold Stachybotrys chartarum induces rhinitis and apoptosis of olfactory sensory neurons in the nasal airways of rhesus monkeys,” Toxicologic Pathology 40, no. 6 (August 2012): 887–98. doi: 10.1177/0192623312444028.
240 “too big a stretch”: M. Nishiyama and T. Kuga, “Central effects of the neurotropic mycotoxin fumitremorgin A in the rabbit. (II). Effects on the brain stem,” Japanese Journal of Pharmacology 52, no. 2 (February 1990): 201–8.
241 “inflammation in their brains”: C. F. Harding, et al., “Environmental mold exposure, brain inflammation, and spatial memory deficits,” Brain, Behavior, and Immunity 49, supplement (October 2015): e42.
241 “human cells in a petri dish”: Arati A. Inamdar, et al., “Fungal-derived semiochemical 1-octen-3-ol disrupts dopamine packaging and causes neurodegeneration,” PNAS 110, no. 48 (November 2013): 19,561–66. doi: 10.1073/pnas.1318830110.
I also wrote a news story about this for Discover: Julie Rehmeyer, “How the Smell of Your Home Could Be Making You Sick,” Discover, January 14, 2014, http://blogs.discovermagazine.com/crux/2014/01/14/how-the-smell-of-your-home-could-be-making-you-sick.
243 “breathed right in”: He discusses all this, and much more, in an episode of IAQ radio: http://recordings.talkshoe.com/TC-1547/TS-1105904.mp3. I really recommend a listen, especially if you’re interested in environmental contributors to asthma, on which Miller is truly a world authority. You’ll also hear that he’s quite an affable guy, even though I couldn’t make sense of his positions on mycotoxins.
243 “mycotoxins could contribute to asthma”: Thomas G. Rand, J. DiPenta, C. Robbins, and J. D. Miller, “Effects of low molecular weight fungal compounds on inflammatory gene transcription and expression in mouse alveolar macrophages,” Chemico-Biological Interactions 190, no. 2-3 (April 2011): 139–47. doi: 10.1016/j.cbi.2011.02.017.
246 “including schools”: K. Fog Nielsen, “Mycotoxin production by indoor molds,” Fungal Genetics and Biology 39, no. 2 (July 2003): 103–17.
EPILOGUE
300 “in the Washington Post”: Julie Rehmeyer, “What is chronic fatigue syndrome, and why aren’t we doing more to treat the illness?” Washington Post, October 6, 2014, www.washingtonpost.com/national/health-science/what-is-chronic-fatigue-syndrome-and-why-arent-we-doing-more-to-treat-the-illness/2014/10/06/4cfff312-d458-11e3-8a78-8fe50322a72c_story.html.
Julie Rehmeyer, “How the definition of chronic fatigue syndrome keeps changing,” Washington Post, October 6, 2014, www.washingtonpost.com/national/health-science/how-the-definition-of-chronic-fatigue-syndrome-keeps-changing/2014/10/06/def05db4-0d1c-11e4-b8e5-d0de80767fc2_story.html.
301 “14,000-word exposé”: David Tuller, “Trial by Error: The Troubling Case of the PACE Chronic Fatigue Syndrome Study,” Virology Blog, October 21, 2015, www.virology.ws/2015/10/21/trial-by-error-i.
301 “I wrote a piece for Slate”: Julie Rehmeyer, “Hope for Chronic Fatigue Syndrome: The debate over this mysterious disease is suddenly shifting,” Slate, November 13, 2015, www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.single.html.
301 “investigation of the trial”: Ronald W. Davis, et al., “An open letter to Dr. Richard Horton and the Lancet,” Virology Blog, November 13, 2015, www.virology.ws/2015/11/13/an-open-letter-to-dr-richard-horton-and-the-lancet/.
302 “released to Matthees”: Queen Mary University of London v. The Information Commissioner, (2015) A. C. EA/2015/0269 (H. L.) (Eng.), http://bit.ly/pace-tribunal.
302 “without the treatments”: K.A. Goldsmith, P.D. White, T. Chalder, A.L. Johnson, and M. Sharpe, “The PACE Trial: Analysis of Primary Outcomes Using Composite Measures of Improvement,” September 8, 2016, www.wolfson.qmul.ac.uk/images/pdfs/pace/PACE_published_protocol_based_analysis_final_8th_Sept_2016.pdf.
Note that this portion of the reanalysis was performed by the PACE researchers themselves, and its findings were spun in the most positive possible light. But the bottom line is that 20 percent of patients who received medical care plus either cognitive behavioral therapy or exercise “improved” by the original protocol, while 10 percent who received only medical care improved. Thus, 10 percent of patients who received cognitive behavioral therapy or exercise improved when they wouldn’t have otherwise.
302 “no patients recovered”: Vincent Racaniello, “No ‘Recovery’ in PACE Trial, New Analysis Finds,” Virology Blog, September 21, 2016, www.virology.ws/2016/09/21/no-recovery-in-pace-trial-new-analysis-finds/.
302 “essay in STAT News”: Julie Rehmeyer, “Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back,” STAT, September 21, 2016, www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/.
302 “graded exercise and CBT”: The Mayo Clinic, WebMD, Kaiser Permanente, UptoDate, Healthwise, and the CDC, among others, promote at least one of the therapies on their Web sites. The American Academy of Family Physicians and the American College of Physicians endorse them.
302 “increasing research funding”: Miriam E. Tucker, “Chronic Fatigue Syndrome Research Gains Funding, and Controversy,” NPR, November 4, 2015, www.npr.org/sections/health-shots/2015/11/04/454335755/chronic-fatigue-syndrome-research-gains-funding-and-controversy/.
302 “still chump change”: Ibid.
303 “physiology of the disease”: Miriam E. Tucker, “With his son terribly ill, a top scientist takes on chronic fatigue syndrome,” Washington Post, October 5, 2015, www.washingtonpost.com/national/health-science/with-his-son-terribly-ill-a-top-scientist-takes-on-chronic-fatigue-syndrome/2015/10/05/c5d6189c-4041-11e5-8d45-d815146f81fa_story.html.
303 “the Open Medicine Foundation”: “End ME/CFS Project,” Open Medicine Foundation, www.openmedicinefoundation.org/the-end-mecfs-project/.
303 “and mitochondrial function”: Cort Johnson, “Fuel Shortage: Norwegian Study Expands on Energy Problem in Chronic Fatigue Syndrome (ME/CFS),” Health Rising, December 27, 2016, www.healthrising.org/blog/2016/12/27/chronic-fatigue-syndrome-energy-problems-fluge-mella-study/.
303 “at Columbia University”: “Scientists Discover Robust Evidence That Chronic Fatigue Syndrome is a Biological Illness,” Columbia University, February 27, 2015, www.mailman.columbia.edu/public-health-now/news/scientists-discover-robust-evidence-chronic-fatigue-syndrome-biological.
303 “the University of California, San Diego”: Ariana Eunjung Cha, “Chronic fatigue syndrome ma
y be a human version of ‘hibernation’,” Washington Post, September 6, 2016, www.washingtonpost.com/news/to-your-health/wp/2016/09/06/chronic-fatigue-syndrome-may-be-a-human-version-of-hibernation/.
303 “of Cornell University”: Krishna Ramanujan, “Indicator of chronic fatigue syndrome found in gut bacteria,” Cornell University, June 24, 2016, www.news.cornell.edu/stories/2016/06/indicator-chronic-fatigue-syndrome-found-gut-bacteria.
303 “Millions Missing”: http://millionsmissing.org
303 “investment in ME/CFS research”: “Dozens of US Representatives Support Letter to NIH for ME/CFS Research,” MeAction.net, September 9, 2016, www.meaction.net/2016/09/09/us-congress-letter-to-nih/.
303 “went up online”: Jennifer Brea, “What happens when you have a disease doctors can’t diagnose,” TEDSummit, June 2016, www.ted.com/talks/jen_brea_what_happens_when_you_have_a_disease_doctors_can_t_diagnose
ABOUT THE AUTHOR
Julie Rehmeyer is an award-winning mathematics and science writer. A contributing editor to Discover magazine, she has been published in the New York Times, Washington Post, Wired, Slate, Science News, and more. Her stories have been featured on NPR. She is the 2016 recipient of the fellowship in Ted Scripps Environmental Journalism at the University of Colorado Boulder, as well as the Excellence in Statistical Reporting Award. She lives in Santa Fe, NM.
Mention of specific companies, organizations, or authorities in this book does not imply endorsement by the author or publisher, nor does mention of specific companies, organizations, or authorities imply that they endorse this book, its author, or the publisher.
Through the Shadowlands Page 37
