Framing the activists: gender, race, and rhetorical disability in contested illnesses

ABSTRACT

For the past five decades, patients with myalgic encephalomyelitis (ME) have struggled against the stereotype that their symptoms are “all in their heads.” With ME now appearing in roughly half the cases of long COVID (LC), some researchers and journalists have recycled old mythologies about ME. This essay applies frame analysis to scientific and mainstream discourse surrounding ME and LC to ask how dominant scripts about disability, gender, and race constrain scientific and cultural growth in the context of contested diseases. Drawing from James Cherney’s work on ableist rhetoric, this essay examines how novel frames repackage staid assumptions that dismiss pain in people marginalized by race and/or gender. ME and LC, as poorly-understood illnesses, provide illustrative case studies of how longstanding bias quietly fills argumentative gaps in scientific and popular discourse. Amid rapidly unfolding public health crises, rhetorical analyses provide crucial insight into how prejudicial beliefs get encoded into disciplinary and public deliberations.

KEYWORDS:

• Disability
• chronic illness
• frame analysis
• Toulmin
• activism

Disclosure statement

No potential conflict of interest was reported by the author(s).

Correction Statement

This article has been corrected with minor changes. These changes do not impact the academic content of the article.

Notes

1 Kate Kelland, “Sick and Tired: Online Activists Are Silencing Us, Scientists Say,” Reuters, March 13, 2019, https://www.reuters.com/investigates/special-report/science-socialmedia/.

2 Follow patient advocacy groups, I choose to use ME rather than the more common CFS or ME/CFS.

3 Kelland, “Sick and Tired.”

4 Charlotte Blease and Keith J. Geraghty, “Are ME/CFS Patient Organizations ‘Militant’?: Patient Protest in a Medical Controversy,” Journal of Bioethical Inquiry 15, no. 3 (September 2018): 398, https://doi.org/10.1007/s11673-018-9866-5.

5 Blease and Geraghty, 396.

6 Andrew Anthony, “ME and the Perils of Internet Activism,” The Guardian, July 28, 2019, sec. Society, https://www.theguardian.com/society/2019/jul/28/me-perils-internet-activism-michael-sharpe-myalgic-encephalomyelitis-chronic-fatigue-pace-trial; Stephen Camarata, “The Dark Side of Social Media Activism in Science,” Psychology Today, July 22, 2019, https://www.psychologytoday.com/us/blog/the-intuitive-parent/201907/the-dark-side-social-media-activism-in-science.

7 Rod Liddle, “Always Fatigued—Yet They Never Tire of Claiming Their Malady Really Is a Virus,” The Sunday Times, March 17, 2019, https://archive.ph/IyNp3.

8 V. Jo Hsu, “Irreducible Damage: The Affective Drift of Race, Gender, and Disability in Anti-Trans Rhetorics,” Rhetoric Society Quarterly 51, no. 2 (February 22, 2022): 62–77.

9 In this journey, Casey Ryan Kelly has situated COVID denial within the white supremacist backlash driving attacks on trans youth and so-called “critical race theory.” Casey Ryan Kelly, “COVID-19 Conspiracy Rhetoric and Other Primal Fantasies,” Quarterly Journal of Speech 109, no. 2 (April 3, 2023): 132–53, https://doi.org/10.1080/00335630.2022.2142654.

10 Hillary Johnson, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, 2006 reprint (Lincoln: Penguin Books, 1996).

11 James L. Cherney, Ableist Rhetoric: How We Know, Value, and See Disability, The RSA Series in Transdisciplinary Rhetoric (University Park, Pennsylvania: The Pennsylvania State University Press, 2019); La Marr Jurelle Bruce, How to Go Mad without Losing Your Mind: Madness and Black Radical Creativity, Black Outdoors (Durham: Duke University Press, 2021); Ellen Jean Samuels, Fantasies of Identification: Disability, Gender, Race, Digital Edition (New York: New York University Press, 2014); Leah Lakshmi Piepzna-Samarasinha, Care Work: Dreaming Disability Justice (Vancouver: Arsenal Pulp Press, 2018); Akemi Nishida, Just Care: Messy Entanglements of Disability, Dependency, and Desire, Dis/Color (Philadelphia: Temple University Press, 2022).

12 Jay Dolmage, Academic Ableism: Disability and Higher Education (Ann Arbor, MI: University of Michigan Press, 2017), 7, https://doi.org/10.3998/mpub.9708722.

13 According to the most recent research in mid-2023. Hannah Davis et al., “Long COVID: Major Findings, Mechanisms and Recommendations,” Nature 21 (January 13, 2023): 133–46.

14 Davis et al.

15 Ed Yong, “Long COVID Has Forced a Reckoning for One of Medicine’s Most Neglected Diseases,” The Atlantic, September 26, 2022, https://www.theatlantic.com/health/archive/2022/09/mecfs-chronic-fatigue-syndrome-doctors-long-covid/671518/.

16 Jack Walton, “Professor Paul Garner Was Delighted to Recover from Long Covid. Then the Death Threats Began,” The Post, February 25, 2023, https://www.livpost.co.uk/p/professor-paul-garner-was-delighted; Natalie Shure, “We Might Have Long Covid All Wrong,” The New Republic, December 8, 2022, https://newrepublic.com/article/168965/might-long-covid-wrong.

17 Leonard A. Jason et al., “The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample,” Child & Youth Care Forum 49, no. 4 (August 2020): 563–79, https://doi.org/10.1007/s10566-019-09543-3; Kamaldeep S Bhui et al., “Chronic Fatigue Syndrome in an Ethnically Diverse Population: The Influence of Psychosocial Adversity and Physical Inactivity,” BMC Medicine 9, no. 1 (December 2011): 26, https://doi.org/10.1186/1741-7015-9-26; Kerin Bayliss et al., “Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalitis in Black and Minority Ethnic People: A Qualitative Study,” Primary Health Care Research & Development 15, no. 02 (April 2014): 143–55, https://doi.org/10.1017/S1463423613000145.

18 Cherney, Ableist Rhetoric, 23.

19 Stacey K. Sowards and Toniesha L. Taylor, “Editorial Statement,” Quarterly Journal of Speech 109, no. 1 (January 2, 2023): 1–1, https://doi.org/10.1080/00335630.2022.2160045; Carmen Kynard and Bryan McCann, “Editor’s Introduction,” Rhetoric, Politics & Culture 1, no. 1 (Summer 2021): v–xiii; Lisa A. Flores, “Towards an Insistent and Transformative Racial Rhetorical Criticism,” Communication and Critical/Cultural Studies 15, no. 4 (October 2, 2018): 349–57, https://doi.org/10.1080/14791420.2018.1526387; GPat Patterson, “Because Trans People Are Speaking: Notes on Our Field’s First Special Issue on Transgender Rhetorics,” Peitho 22, no. 4 (Summer 2020), https://cfshrc.org/article/because-trans-people-are-speaking-notes-on-our-fields-first-special-issue-on-transgender-rhetorics/; Ada Hubrig, “Disability Justice Academia Isn’t,” Spark: A 4C4Equality Journal, September 12, 2022, https://sparkactivism.com/volume-4-introduction/.

20 David A. Snow and Robert D. Benford, “Master Frames and Cycles of Protest,” in Frontiers in Social Movement Theory, ed. Aldon D. Morris and Carol McCLurg Mueller (New Haven: Yale University Press, 1992), 137.

21 Matthew C. Nisbet, “Communicating Climate Change: Why Frames Matter for Public Engagement,” Environment: Science and Policy for Sustainable Development 51, no. 2 (March 2009): 15, https://doi.org/10.3200/ENVT.51.2.12-23.

22 David A. Snow, Rens Vliegenthart, and Pauline Ketelaars, “The Framing Perspective on Social Movements: Its Conceptual Roots and Architecture,” in The Wiley Blackwell Companion to Social Movements, ed. David A. Snow et al., 1st ed. (Malden, MA: Wiley, 2019), 393, https://doi.org/10.1002/9781119168577.ch22.

23 Robert M. Entman, Projections of Power: Framing News, Public Opinion, and U.S. Foreign Policy, Studies in Communication, Media, and Public Opinion (Chicago: University of Chicago Press, 2004); Robert M. Entman, “Framing: Toward Clarification of a Fractured Paradigm,” Journal of Communication 43, no. 4 (December 1, 1993): 51–58, https://doi.org/10.1111/j.1460-2466.1993.tb01304.x.

24 Christa Teston, Bodies in Flux: Scientific Methods for Negotiating Medical Uncertainty (Chicago; London: The University of Chicago Press, 2017); Colleen Derkatch, Bounding Biomedicine: Evidence and Rhetoric in the New Science of Alternative Medicine (Chicago: The University of Chicago Press, 2016).

25 Toby Bolsen, Risa Palm, and Justin T. Kingsland, “Framing the Origins of COVID-19,” Science Communication 42, no. 5 (October 2020): 563, https://doi.org/10.1177/1075547020953603.

26 Fig 1. Alt text: A diagram depicting the following rationale: [Data] ME is a psychiatric diagnosis. → Since [Warrant] People with psychiatric conditions are untrustworthy. → So [Claim] These patients (and their accounts of their own experiences) are untrustworthy.

27 As discussed through enthymemes in J. Blake Scott, “The Public Policy Debate over Newborn HIV Testing: A Case Study of the Knowledge Enthymeme,” Rhetoric Society Quarterly 32, no. 2 (March 2002): 57–83, https://doi.org/10.1080/02773940209391228; Matthew Jackson, “The Enthymematic Hegemony of Whiteness: The Enthymeme as Antiracist Rhetorical Strategy,” JAC 26, no. 3/4 (2006): 601–41; Krista Ratcliffe, “In Search of the Unstated: The Enthymeme of/and Whiteness,” JAC 27, no. 1–2 (2007): 275–89; Danny Rodriguez, “Countering Racial Enthymemes: What We Can Learn About Race from Donald J. Trump,” Constellations: A Cultural Rhetorics Publishing Space, no. 3 (November 23, 2020), https://constell8cr.com/issue-3/countering-racial-enthymemes-what-we-can-learn-about-race-from-donald-j-trump/.

28 Cherney, Ableist Rhetoric, 25.

29 Stephen Toulmin, The Uses of Argument, Updated ed (Cambridge: Cambridge University Press, 2003), 96.

30 Jenell Johnson, “The Skeleton on the Couch: The Eagleton Affair, Rhetorical Disability, and the Stigma of Mental Illness,” Rhetoric Society Quarterly 40, no. 5 (November 15, 2010): 461, https://doi.org/10.1080/02773945.2010.517234.

31 Johnson, 468.

32 Eli Clare, Brilliant Imperfection: Grappling with Cure (Durham: Duke University Press, 2017); Amy Koerber, From Hysteria to Hormones: A Rhetorical History, The RSA Series in Transdisciplinary Rhetoric (University Park: The Pennsylvania State University Press, 2018); Therí A. Pickens, Black Madness: Mad Blackness (Durham London: Duke University Press, 2019); Bruce, How to Go Mad without Losing Your Mind.

33 Simon Wessely, “Malingering: Historical Perspectives,” in Malingering and Illness Deception, ed. Peter W. Halligan, Christopher M. Bass, and David A. Oakley (New York: Oxford University Press, 2003), 32–41. Ironically, Wessely has also been instrumental in psychopathologizing ME.

34 Jonathan Metzl, The Protest Psychosis: How Schizophrenia Became a Black Disease (Boston: Beacon Press, 2009).

35 Jack Drescher, “Out of DSM: Depathologizing Homosexuality,” Behavioral Sciences 5, no. 4 (December 4, 2015): 565–75, https://doi.org/10.3390/bs5040565.

36 Hil Malatino, Queer Embodiment: Monstrosity, Medical Violence, and Intersex Experience (Lincoln: University of Nebraska Press, 2019); Stef M. Shuster, Trans Medicine: The Emergence and Practice of Treating Gender, Kindle edition (New York: New York University Press, 2021); M. Remi Yergeau, “Cassandra Isn’t Doing the Robot: On Risky Rhetorics and Contagious Autism,” Rhetoric Society Quarterly 50, no. 3 (May 26, 2020): 212–21, https://doi.org/10.1080/02773945.2020.1752132; V. Jo Hsu, “Trans Tricksters, Looping Effects, and Gender Diagnoses as Containment,” Rhetoric of Health and Medicine, Forthcoming 2023.

37 Bhui et al., “Chronic Fatigue Syndrome in an Ethnically Diverse Population”; Jason et al., “The Prevalence of Pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a Community-Based Sample”; Patricia A. Fennell, Nancy Dorr, and Shane S. George, “Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected,” Healthcare 9, no. 5 (May 9, 2021): 553, https://doi.org/10.3390/healthcare9050553.

38 Jo Nijs et al., “Altered Immune Response to Exercise in Patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A Systematic Literature Review,” Exercise Immunology Review 20 (2014): 94–116.

39 Y. Jammes et al., “Chronic Fatigue Syndrome: Assessment of Increased Oxidative Stress and Altered Muscle Excitability in Response to Incremental Exercise,” Journal of Internal Medicine 257, no. 3 (March 2005): 299–310, https://doi.org/10.1111/j.1365-2796.2005.01452.x; Y. Jammes et al., “Chronic Fatigue Syndrome Combines Increased Exercise-Induced Oxidative Stress and Reduced Cytokine and Hsp Responses,” Journal of Internal Medicine 266, no. 2 (August 2009): 196–206, https://doi.org/10.1111/j.1365-2796.2009.02079.x.

40 D. L. Cordero et al., “Decreased Vagal Power during Treadmill Walking in Patients with Chronic Fatigue Syndrome,” Clinical Autonomic Research 6, no. 6 (December 1996): 329–33, https://doi.org/10.1007/BF02556303; Anthony J. Ocon et al., “Increasing Orthostatic Stress Impairs Neurocognitive Functioning in Chronic Fatigue Syndrome with Postural Tachycardia Syndrome,” Clinical Science 122, no. 5 (March 1, 2012): 227–38, https://doi.org/10.1042/CS20110241.

41 Whitney Dafoe, “Extremely Severe ME/CFS—A Personal Account,” Healthcare 9, no. 5 (April 27, 2021): 504, https://doi.org/10.3390/healthcare9050504; Karl Conroy et al., “Homebound versus Bedridden Status among Those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” Healthcare 9, no. 2 (January 20, 2021): 106, https://doi.org/10.3390/healthcare9020106.

42 Joshua Bond, Tessa Nielsen, and Lynette Hodges, “Effects of Post-Exertional Malaise on Markers of Arterial Stiffness in Individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” International Journal of Environmental Research and Public Health 18, no. 5 (February 28, 2021): 2366, https://doi.org/10.3390/ijerph18052366; Lynette Hodges et al., “The Physiological Time Line of Post-exertional Malaise in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS),” Translational Sports Medicine 3, no. 3 (May 2020): 243–49, https://doi.org/10.1002/tsm2.133; Todd E. Davenport et al., “Chronotropic Intolerance: An Overlooked Determinant of Symptoms and Activity Limitation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome?,” Frontiers in Pediatrics 7 (March 22, 2019): 82, https://doi.org/10.3389/fped.2019.00082.

43 Center for Disease Control and Prevention, “New ME/CFS Web Content for Healthcare Providers,” CDC Newsroom, July 12, 2018, https://www.cdc.gov/media/releases/2018/a0712-new-website-me-cfs.html.

44 Colin McEvedy and A.W. Beard, “Royal Free Epidemic of 1955: A Reconsideration,” British Medical Journal 1, no. 5687 (January 3, 1970): 7.

45 McEvedy and Beard, “Royal Free Epidemic of 1955: A Reconsideration.”

46 Mark S. Micale, Approaching Hysteria: Disease and Its Interpretations, Princeton Legacy Library edition, Princeton Legacy Library (Princeton, New.Jersey: Princeton University Press, 2019).

47 J. G. Ingham and J. O. Robinson, “Personality in the Diagnosis of Hysteria,” British Journal of Psychology 55, no. 3 (August 1964): 276–84, https://doi.org/10.1111/j.2044-8295.1964.tb00911.x.

48 Sabine Arnaud, On Hysteria: The Invention of a Medical Category between 1670 and 1820 (Chicago: The University of Chicago Press, 2015).

49 Laura Briggs, “The Race of Hysteria: ‘Overcivilization’ and the ‘Savage’ in Late Nineteenth-Century Obstetrics and Gynecology,” American Quarterly 52, no. 2 (2000): 246–73, https://doi.org/10.1353/aq.2000.0013.

50 C. P. McEvedy and A. W. Beard, “Concept of Benign Myalgic Encephalomyelitis,” BMJ 1, no. 5687 (January 3, 1970): 12, https://doi.org/10.1136/bmj.1.5687.11.

51 McEvedy and Beard, “Royal Free Epidemic of 1955: A Reconsideration,” 7.

52 Ingham and Robinson, “Personality in the Diagnosis of Hysteria.”

53 McEvedy and Beard, “Royal Free Epidemic of 1955: A Reconsideration,” 10.

54 Colin P. McEvedy and A. W. Beard, “A Controlled Follow-up of Cases Involved in an Epidemic of ‘Benign Myalgic Encephalomyelitis,’” British Journal of Psychiatry 122, no. 567 (February 1973): 142, https://doi.org/10.1192/bjp.122.2.141.

55 McEvedy and Beard, 142.

56 McEvedy and Beard, 143.

57 McEvedy and Beard, 143.

58 McEvedy and Beard, 143.

59 P. De Becker, N. McGregor, and K. De Meirleir, “A Definition-Based Analysis of Symptoms in a Large Cohort of Patients with Chronic Fatigue Syndrome,” Journal of Internal Medicine 250, no. 3 (September 15, 2001): 234–40, https://doi.org/10.1046/j.1365-2796.2001.00890.x; Homa Timlin et al., “Fevers in Adult Lupus Patients,” Cureus, January 22, 2018, https://doi.org/10.7759/cureus.2098; T. Kallinich et al., “Unexplained Recurrent Fever: When Is Autoinflammation the Explanation?,” Allergy 68, no. 3 (March 2013): 285–96, https://doi.org/10.1111/all.12084.

60 McEvedy and Beard, “A Controlled Follow-up of Cases Involved in an Epidemic of ‘Benign Myalgic Encephalomyelitis,’” 149.

61 In Cherney’s work on ableism, this myth equates deviance with a sign of evil. Cherney, Ableist Rhetoric, 73.

62 Jay Dolmage, Disability Rhetoric, First Edition, Critical Perspectives on Disability (Syracuse: Syracuse University Press, 2014), chap. Interchapter: An Archive and Anatomy of Disability Myths.

63 Snow and Benford, “Master Frames and Cycles of Protest.”

64 Cherney, Ableist Rhetoric, 25.

65 Anne Harrington, The Cure within: A History of Mind-Body Medicine, First published as a Norton paperback (New York: W.W. Norton & Company, 2009), 94.

66 Emily K. Abel, Sick and Tired: An Intimate History of Fatigue, Studies in Social Medicine (Chapel Hill: The University of North Carolina Press, 2021), 100.

67 Keith J. Geraghty and Charlotte Blease, “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and the Biopsychosocial Model: A Review of Patient Harm and Distress in the Medical Encounter,” Disability and Rehabilitation 41, no. 25 (June 21, 2018): 3092–3102, https://doi.org/10.1080/09638288.2018.1481149.

68 Susan Abbey and Paul Garfinkel, “Neurasthenia and Chronic Fatigue Syndrome: The Role of Culture in the Making of a Diagnosis,” American Journal of Psychiatry 148, no. 12 (December 1991): 1644, https://doi.org/10.1176/ajp.148.12.1638.

69 S Straus et al., “Allergy and the Chronic Fatigue Syndrome,” Journal of Allergy and Clinical Immunology 81, no. 5 (May 1988): 791, https://doi.org/10.1016/0091-6749(88)90933-5.

70 Neville Hodgkinson, “‘Yuppie Flu’ Is All in the Mind, Says Doctors; ME Disease, Myalgic Encephalomyelitis,” The Sunday Times, July 17, 1988.

71 Robin McKie, “Chronic Fatigue Syndrome Researchers Face Death Threats from Militants,” The Observer, August 20, 2011, sec. Society, https://www.theguardian.com/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis.

72 M. Sharpe et al., “Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management,” General Hospital Psychiatry 19, no. 3 (May 1997): 186, https://doi.org/10.1016/S0163-8343(97)80315-5; Melanie Newman, “Chronic Fatigue Syndrome and Long Covid: Moving beyond the Controversy,” BMJ, June 23, 2021, n1559, https://doi.org/10.1136/bmj.n1559.

73 Recent research indicates that patients with more severe symptoms are also more likely to experience more stigma. Laura Froehlich et al., “Causal Attributions and Perceived Stigma for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” Journal of Health Psychology 27, no. 10 (September 2022): 2291–2304, https://doi.org/10.1177/13591053211027631.

74 Most notably Pd White et al., “Comparison of Adaptive Pacing Therapy, Cognitive Behaviour Therapy, Graded Exercise Therapy, and Specialist Medical Care for Chronic Fatigue Syndrome (PACE): A Randomised Trial,” The Lancet 377, no. 9768 (March 2011): 823–36, https://doi.org/10.1016/S0140-6736(11)60096-2.

75 Alex Scott-Samuel et al., “The Impact of Thatcherism on Health and Well-Being in Britain,” International Journal of Health Services 44, no. 1 (January 2014): 53–71, https://doi.org/10.2190/HS.44.1.d; Keith Wailoo, Pain: A Political History (Baltimore: Johns Hopkins University Press, 2014).

76 Wailoo, Pain, 100.

77 Brena quoted in Wailoo, 109.

78 Judith A. Richman and Leonard A. Jason, “Gender Biases Underlying the Social Construction of Illness States: The Case of Chronic Fatigue Syndrome,” Current Sociology 49, no. 3 (2001): 19, https://doi.org/10.1177/0011392101049003003; See also Sharpe et al., “Chronic Fatigue Syndrome: A Practical Guide to Assessment and Management,” 193.

79 Joanne Hunt, “Towards a Critical Psychology of Chronic Fatigue Syndrome: Biopsychosocial Narratives and UK Welfare Reform,” Journal of Critical Psychology, Counselling and Psychotherapy 22, no. 1 (2022): 21.

80 Aleksandra E. Olszewski, “Narrative, Compassion, and Counter Stories,” AMA Journal of Ethics 24, no. 3 (March 1, 2022): E212-217, https://doi.org/10.1001/amajethics.2022.212.

81 Viet Thanh Nguyen, “Asian-Americans Need More Movies, Even Mediocre Ones,” The New York Times, August 21, 2018, sec. Opinion, https://www.nytimes.com/2018/08/21/opinion/crazy-rich-asians-movie.html; V. Jo Hsu, Constellating Home: Trans and Queer Asian American Rhetorics (Columbus: The Ohio State University Press, 2022), 23.

82 Olszewski, “Narrative, Compassion, and Counter Stories”; Aja Y. Martinez, Counterstory: The Rhetoric and Writing of Critical Race Theory, CCC Studies in Writing & Rhetoric (Champaign: Conference on College Composition and Communication ; National Council of Teachers of English, 2020).

83 Michael Sun et al., “Negative Patient Descriptors: Documenting Racial Bias In The Electronic Health Record: Study Examines Racial Bias in the Patient Descriptors Used in the Electronic Health Record.,” Health Affairs 41, no. 2 (February 1, 2022): 203–11, https://doi.org/10.1377/hlthaff.2021.01423; Freda F. Liu et al., “School Mental Health Professionals’ Knowledge of Stereotypes and Implicit Bias toward Black and Latinx Youths,” Psychiatric Services 73, no. 11 (November 1, 2022): 1308–11, https://doi.org/10.1176/appi.ps.202100253; Sara Prego-Jimenez et al., “The Impact of Sexism and Gender Stereotypes on the Legitimization of Women’s Low Back Pain,” Pain Management Nursing 23, no. 5 (October 2022): 591–95, https://doi.org/10.1016/j.pmn.2022.03.008.

84 United States General Accounting Office, “Social Security: Racial Difference in Disability Decisions Warrants Further Investigation,” April 1992, https://www.gao.gov/assets/hrd-92-56.pdf.

85 Wilhelmina Jenkins, “Patient Perspective: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” UpToDate, July 8, 2022, https://www.uptodate.com/contents/patient-perspective-myalgic-encephalomyelitis-chronic-fatigue-syndrome.

86 Lucinda Bateman et al., “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management,” Mayo Clinic Proceedings 96, no. 11 (November 2021): 2861–78, https://doi.org/10.1016/j.mayocp.2021.07.004; Larry Au et al., “Long Covid and Medical Gaslighting: Dismissal, Delayed Diagnosis, and Deferred Treatment,” SSM—Qualitative Research in Health 2 (December 2022): 100167, https://doi.org/10.1016/j.ssmqr.2022.100167.

87 Bateman et al., “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”; Au et al., “Long Covid and Medical Gaslighting.”

88 UNUM Group, one of the largest disability insurers in the US and the UK, drew largely from BPS research (at times through actual professional partnerships with BPS researchers) to prevent “highly educated professionals” from “slipping into self-imposed oblivion!” Carolyn L. Jackson, “UNUM Life Insurance Company Southern Regional Benefits Chronic Fatigue Management Program,” April 4, 1995.

89 Johnson, Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, 154.

90 White et al., “Comparison of Adaptive Pacing Therapy, Cognitive Behaviour Therapy, Graded Exercise Therapy, and Specialist Medical Care for Chronic Fatigue Syndrome (PACE).”

91 David F Marks, “Special Issue on the PACE Trial,” Journal of Health Psychology 22, no. 9 (August 2017): 1104, https://doi.org/10.1177/1359105317722370.

92 Carolyn E. Wilshire et al., “Rethinking the Treatment of Chronic Fatigue Syndrome—a Reanalysis and Evaluation of Findings from a Recent Major Trial of Graded Exercise and CBT,” BMC Psychology 6, no. 1 (December 2018): 6, https://doi.org/10.1186/s40359-018-0218-3; David Tuller, “The 2018 PACE Reanalysis and the SMC’s Expert Appraisals,” Virology (blog), January 13, 2020, https://virology.ws/2020/01/13/trial-by-error-the-2018-pace-reanalysis-and-the-smcs-expert-appraisals/.

93 Ableist metaphors abound in medicine.

94 Mark Vink, “PACE Trial Authors Continue to Ignore Their Own Null Effect,” Journal of Health Psychology 22, no. 9 (August 2017): 1137, https://doi.org/10.1177/1359105317703785.

95 “Cracking the Conundrum of Chronic Fatigue Syndrome,” NPR Morning Edition, September 5, 2011, https://advance-lexis-com.ezproxy.lib.utexas.edu/api/document?collection=news&id=urn:contentItem:53R2-VDX1-DY2S-N0YS-00000-00&context=1516831.

96 David Tuller, “Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds,” The New York Times, February 17, 2011, sec. Health, https://www.nytimes.com/2011/02/18/health/research/18fatigue.html.

97 McKie, “Chronic Fatigue Syndrome Researchers Face Death Threats from Militants.”

98 For clarity: Wessely is not an author of the PACE study, but has collaborated with Michael Sharpe, and the authors of PACE belong to what others have called the “Wessely school” of ME research.

99 The Times, “Doctor’s Hate Mail Is Sent by the People He Tried to Cure,” The Sunday Times, August 6, 2011, https://www.thetimes.co.uk/article/doctors-hate-mail-is-sent-by-the-people-he-tried-to-cure-5rh3282d6v5.

100 Jenny Hope, “Death Threats to Scientists Who Say ME May Be ‘All in the Mind’,” The Daily Mail, July 29, 2011, https://www.dailymail.co.uk/health/article-2020241/Scientists-investigating-ME-death-threats-investigating-psychological-causes.html.

101 The Times, “Doctor’s Hate Mail Is Sent by the People He Tried to Cure.”

102 Al Lawati Abbas and Nadeen Ebrahim, “How the Ukraine War Exposed Western Media Bias,” CNN, March 4, 2022, https://www.cnn.com/2022/03/04/media/mideast-summary-04-03-2022-intl/index.html.

103 And divergences, which I will explore in future writing.

104 Tim Newburn, Trevor Jones, and Jarrett Blaustein, “Framing the 2011 England Riots: Understanding the Political and Policy Response,” The Howard Journal of Crime and Justice 57, no. 3 (September 2018): 339–40, https://doi.org/10.1111/hojo.12268.

105 Richard Kemp, “Water Cannon and Plastic Bullets, Please; Bringing in the Army Would Be Going Too Far. But the Police Have Got to Deter Rioters by Using Real Force,” The Times, August 10, 2011.

106 The Times, “Take Back the Streets; Rioting in the Capital Has Descended into a Senseless and Motiveless Parade of Violence and Destruction.,” The Times, August 9, 2011.

107 Jack Doyle, “Stop Excusing Greedy Rioters, May Tells LSE,” The Daily Mail, December 15, 2011.

108 Louise Casey, Listening to Troubled Families (London: Department for Communities and Local Government, July 2012), 62.

109 Wilshaw, quoted in Jill Sherman and Alexi Mostrous, “Poverty, Boredom and Despair: It’s a Volatile Mix for Susceptible Minds,” The Times, September 15, 2011.

110 Lindsay Johns, “Apologists for These Thugs Should Hang Their Heads in Shame: A Stinging Rebuke from an Inner-City Youth Worker,” Mail Online, August 9, 2011, https://www.dailymail.co.uk/debate/article-2023922/London-riots-Apologists-thugs-hang-heads-shame.html.

111 The Times, “Take Back the Streets; Rioting in the Capital Has Descended into a Senseless and Motiveless Parade of Violence and Destruction.”

112 Doyle, “Stop Excusing Greedy Rioters, May Tells LSE.”

113 Sherman and Mostrous, “Poverty, Boredom and Despair: It’s a Volatile Mix for Susceptible Minds.”

114 Kemp, “Water Cannon and Plastic Bullets, Please; Bringing in the Army Would Be Going Too Far. But the Police Have Got to Deter Rioters by Using Real Force.”

115 Toby Helm, “David Cameron’s War on Gang Culture Backfired, Says Thinktank,” The Guardian, October 27, 2012, sec. Society, https://www.theguardian.com/society/2012/oct/28/cameron-war-gang-culture-backfired.

116 Helm.

117 Carly Lightowlers and Hannah Quirk, “The 2011 English ‘Riots’: Prosecutorial Zeal and Judicial Abandon,” British Journal of Criminology 55, no. 1 (January 2015): 65–85, https://doi.org/10.1093/bjc/azu081.

118 Matteo Tiratelli, “The London Riots Ten Years on: How a Crackdown on Protest Became Their Main Legacy,” The Conversation, August 2, 2021, http://theconversation.com/the-london-riots-ten-years-on-how-a-crackdown-on-protest-became-their-main-legacy-165048.

119 Bruce, How to Go Mad without Losing Your Mind.

120 Casey, Listening to Troubled Families, 46.

121 Casey, 1.

122 Casey, 64.

123 Wessely quoted in The Times, “Doctor’s Hate Mail Is Sent by the People He Tried to Cure.”

124 Ibid.

125 Simon Wessely, Matthew Hotopf, and Michael Sharpe, Chronic Fatigue and Its Syndromes (Oxford: Oxford University Press, 1999), 283–84; Liddle, “Always Fatigued—Yet They Never Tire of Claiming Their Malady Really Is a Virus.”

126 Joanna Williams, The Corrosive Impact of Transgender Ideology (London: Civitas, 2020), 71; Jonathan Kay, “The Search to Explain Our Anxiety and Depression: Will ‘Long COVID’ B … ,” Quillette, April 17, 2021, https://quillette.com/2021/04/15/the-search-to-explain-our-anxiety-and-depression-will-long-covid-become-the-next-gender-ideology/. And, for a surprising conflation of trans activism and ME patient activism, see J. K. Rowling’s novel The Ink Black Heart.

127 Kay, “The Search to Explain Our Anxiety and Depression.”

128 American College of Physicians, “Attacks on Gender-Affirming and Transgender Health Care,” American College of Physicians, April 24, 2023, https://www.acponline.org/advocacy/state-health-policy/attacks-on-gender-affirming-and-transgender-health-care.

129 Frederick M. Hess, “Say No to ‘Anti-Racist’ Racial Segregation in Schools,” National Review (blog), August 12, 2021, https://www.nationalreview.com/2021/08/say-no-to-anti-racist-racial-segregation-in-schools/; See also PEN America, “Educational Gag Orders” (PEN America, n.d.), https://pen.org/wp-content/uploads/2022/02/PEN_EducationalGagOrders_01-18-22-compressed.pdf.

130 George Monbiot, “Apparently Just by Talking about It, I’m Super-Spreading Long Covid,” The Guardian, April 14, 2021, sec. Opinion, https://www.theguardian.com/commentisfree/2021/apr/14/super-spreading-long-covid-professor-press-coverage. See Sharpe’s slides at: https://www.swissre.com/dam/jcr:788aa287-7026-430a-8c14-f656421b6e71/swiss-re-institute-event-secondary-covid19-impacts-presentation-michael-sharpe.pdf

131 Sharpe, quoted in Monbiot.

132 Patricia Hill Collins, Black Feminist Thought: Knowledge, Consciousness, and the Politics of Empowerment, 2nd ed. (New York: Routledge, 2000).

133 For more on rhetorical “looping effects” see Hsu, “Trans Tricksters.”

134 Malatino, Queer Embodiment.

135 See, for example: the Patient-Led Research Collaborative, #MEAction, Solve M.E., the Putrino Lab, and the Open Medicine Foundation.