58 “Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds”: David Tuller, “Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds,” New York Times, February 17, 2011, www.nytimes.com/2011/02/18/health/research/18fatigue.html.
59 “nicknamed the PACE trial”: P. D. 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,” Lancet 377, no. 9768 (March 2011): 823–36.
59 “641 subjects, $8 million”: It was 5 million British pounds, which converts to $8 million in 2011 dollars. See Section 2.1.4 of www.rae.ac.uk/submissions/ra5a.aspx?id=176&type=hei&subid=3181. “The PACE trial (7 UK centres) of chronic fatigue syndrome (CFS) treatments (MRC; £5.0M).”
60 “CNN”: Tom Watkins, “Study supports use of 2 controversial treatments for chronic fatigue,” CNN.com, February 18, 2011, www.cnn.com/2011/HEALTH/02/17/chronic.fatigue/.
60 “NPR”: Richard Know, “Psychotherapy and Exercise Look Best to Treat Chronic Fatigue Syndrome,” WBUR.org, February 18, 2011, www.wbur.org/npr/133865482/psychotherapy-and-exercise-look-best-to-treat-chronic-fatigue-syndrome/.
60 “the BBC”: “Brain and body training treats ME, UK study says,” BBC.com, February 18, 2011, www.bbc.com/news/health-12493009.
60 “Reuters”: Kate Kelland, “Pushing limits can help chronic fatigue patients,” Reuters, February 17, 2011, www.reuters.com/article/2011/02/18/us-fatigue-me-idUSTRE71H02320110218.
60 “the Independent”: Jeremy Laurance, “Got ME? Just get out and exercise, say scientists,” Independent, February 17, 2011, www.independent.co.uk/life-style/health-and-families/health-news/got-me-just-get-out-and-exercise-say-scientists-2218377.html.
60 “the Times of London”: Chris Smyth, “ME sufferers ‘better pushing their limits’,” Times, February 18, 2011, www.thetimes.co.uk/tto/health/news/article2917876.ece.
60 “had a full recovery”: “Got ME? Fatigued patients who go out and exercise have best hope of recovery, finds study,” Daily Mail, February 18, 2011, www.dailymail.co.uk/health/article-1358269/Chronic-fatigue-syndrome-ME-patients-exercise-best-hope-recovery-finds-study.html. See also notes 9 and 10.
60 “refused these treatments”: “Insurance Industry Practices Which Discriminate Against People with ME,” (presentation, All Party Parliamentary Group, London, December 14, 2004). www.roydsrdw.com/pdf/APPG%20minutes%20141204.pdf.
60 “against their will”: Criona Wilson, “The Story of Sophia and ME,” Invest in ME, www.investinme.org/Article-050%20Sophia%20Wilson%2001.htm.
60 “online patient forum”: http://forums.phoenixrising.me/index.php.
61 “got out of shape”: Mary Burgess and Trudie Chalder, “Manual for Therapists: Cognitive Behaviour Therapy for CFS/ME,” December 8, 2004: 17–18. www.wolfson.qmul.ac.uk/images/pdfs/3.cbt-therapist-manual.pdf.
61 “remained unfit”: Ibid.
61 “a vicious spiral”: Ibid.
61 “lacking a stable social environment”: U.M. Nater, J.F. Jones, J.M. Lin, E. Maloney, W.C. Reeves, and C. Heim, “Personality features and personality disorders in chronic fatigue syndrome: A population-based study,” Psychotherapy and Psychosomatics 79, no. 5 (July 2010): 312–18. doi: 10.1159/000319312.
62 “Journal of Psychosomatic Research”: S.S. Taillefer, L.J. Kirmayer, J.M. Robbins, and J.C. Lasry, “Correlates of illness worry in chronic fatigue syndrome,” Journal of Psychosomatic Research 54, no. 4 (April 2003): 331–37.
CHAPTER 6
64 “psychotherapist Larry LeShan”: Lawrence LeShan, Cancer As a Turning Point: A Handbook for People with Cancer, Their Families, and Health Professionals, Revised ed. (New York: Plume, 1994).
68 “known as XMRV”: 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.
68 “embroiled in controversy”: Martin Enserink, “Conflicting Papers on Hold as XMRV Frenzy Reaches New Heights,” Science 329, no. 5987 (July 2010): 18–19.
75 “how to exercise safely”: This video provides a guide to Klimas’s exercise recommendations: https://vimeo.com/ondemand/klimasexercise.
75 “before she could recommend it”: At the time this book goes to print, research results on rituximab, the drug in question, continued to look promising. It is in phase three clinic trials in Norway.
Miriam E. Tucker, “Immune-Modulating Agents Eyed for ‘Chronic Fatigue Syndrome’,” Medscape, November 11, 2016, www.medscape.com/viewarticle/871787.
CHAPTER 7
79 “in seven dimensions”: Robert Siegel, “American Mathematician Wins Abel Prize,” NPR, March 24, 2011, www.npr.org/2011/03/24/134832727/American-Mathematician-Wins-Abel-Prize.
CHAPTER 8
91 “only proven treatments for ME/CFS”: These websites recommended CBT and graded exercise before the PACE trial as well, based on previous, smaller studies by the same group of British mental health professionals, which had similar flaws. The PACE trial reinforced the belief in these treatments.
“Chronic Fatigue Syndrome: Managing Activities and Exercise,” CDC.gov, February 14, 2013, https://www.cdc.gov/cfs/management/managing-activities.html.
“Chronic Fatigue Syndrome: Treatments and Drugs,” Mayoclinic.com, August 30, 2016, www.mayoclinic.org/diseases-conditions/chronic-fatigue-syndrome/basics/treatment/con-20022009.
Stephen J. Gluckman, “Treatment of Systemic Exertion Intolerance Disease (Chronic Fatigue Syndrome),” UpToDate.com, December 2016, www.uptodate.com/contents/treatment-of-systemic-exertion-intolerance-disease-chronic-fatigue-syndrome.
“Chronic Fatigue Syndrome: Using Graded Exercise to Get More Energy,” Healthwise, March 29, 2016, http://bit.ly/kaiser-cbt-get.
92 “evil”: Phoenix Rising forums, “CAA is Listening,” February 18, 2011, http://forums.phoenixrising.me/index.php?threads/caa-is-listening.2280/page-16#post-54877.
92 “warped”: Phoenix Rising forums, “Simon Wessely’s Warped Mind Strike Again,” September 24, 2011, http://forums.phoenixrising.me/index.php?threads/simon-wesselys-warped-mind-strikes-again.12370/.
92 “morally bankrupt”: Ibid.
92 “association with psychiatry”: You can gorge on quotations (with citations) from Wessely’s work here: http://forums.phoenixrising.me/index.php?attachments/wessely-board1-pdf.4279/. This particular quote comes from The National Archives of the UK: Public Record Office (PRO) BN 141/1, 1 October 1993, Wessely to Aylward, 17–18.
92 “benefits, etc.”: Simon Wessely, “Chronic Fatigue Syndrome: Current Issues,” Reviews in Medical Microbiology 3 (1992): 211–16.
92 “preserves self-esteem”: S. Butler, T. Chalder, M. Ron, and S. Wessely, “Cognitive Behaviour Therapy in Chronic Fatigue Syndrome,” Journal of Neurology, Neurosurgery, & Psychiatry 54 (1991): 153–58. doi:10.1136/jnnp.54.2.153.
92 “make patients worse”: The National Archives of the UK: Public Record Office (PRO) BN 141/1, October or November 1993, McGrath Summarizing Talk by Thomas and Wessely, 6–8, 10. http://forums.phoenixrising.me/index.php?attachments/wessely-board1-pdf.4279/.
92 “like mental illnesses are”: Stephen T. Holgate, Anthony L. Komaroff, Dennis Mangan, and Simon Wessely, “Chronic Fatigue Syndrome: Understanding a Complex Illness,” Nature Reviews Neuroscience 12, no. 9 (September 2011): 539–44. doi: 10.1038/nrn3087.
92 “power to change them”: “…[CFS] symptoms are perpetuated by a cycle of inactivity, deterioration in exercise tolerance and further symptoms. This is compounded by the depressive illness that is often part of the syndrome. The result is a self-perpetuating cycle of exercise avoidance.”
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.
92 “less likely they are to recover”: “Attributing fatigue to social reasons appears to be most pro
tective.”
T. Chalder, M. J. Power, and S. Wessely, “Chronic Fatigue in the Community: ‘A Question of Attribution’,” Psychological Medicine 26, no.4 (July 1996): 791–800.
92 “seeing problems as catastrophes”: “The most important starting point is to promote a consistent pattern of activity, rest, and sleep, followed by a gradual return to normal activity; ongoing review of any ‘catastrophic’ misinterpretation of symptoms and the problem solving of current life difficulties.”
Michael Sharpe, Trudie Chalder, Ian Palmer, and Simon Wessely, “Chronic Fatigue Syndrome: A practical guide to assessment and management,” General Hospital Psychiatry 19, no. 3 (June 1997): 185–99. doi: 10.1016/S0163-8343(97)80315-5.
92 “focusing on their symptoms”: “Diagnosis elicits the belief the patient has a serious disease, leading to symptom focusing that becomes self-validating and self-reinforcing and that renders worse outcomes, a self-fulfilling prophecy, especially if the label is a biomedical one like ME.”
M.J. Huibers and S. Wessely, “The act of diagnosis: pros and cons of labelling chronic fatigue syndrome,” Psychological Medicine 36, no. 7 (July 2006): 895–900.
92 “search for physiological treatments”: “Many patients referred to a specialized hospital with chronic fatigue syndrome have embarked on a struggle. This may take the form of trying to find an acceptable diagnosis, or indeed any diagnosis, and may involve reading the scientific literature concerned with the condition—health professionals appear to be over-represented among those seen in hospital practice with this condition. One of the principal functions of therapy at this stage is to allow the patient to call a halt without loss of face.”
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.
92 “search for physiological problems”: “However, the simple combination of history, examination and basic tests will establish those who require further investigation. In the majority this simple screen will be normal, and over investigation should be avoided. Not only is it a waste of resources, it may not be in the patients’ interest, and may reinforce maladaptive behaviour in a variety of ways.”
Simon Wessely, “Chronic fatigue syndrome,” Journal of Neurology, Neurosurgery, & Psychiatry 54 (1991): 669–671.
93 “medical science had to offer”: Wessely continued to maintain this for years. For example, he posted this comment on a blog post: “I do believe that the studies of CBT and GET for CFS (including but certainly not restricted to the PACE trial) . . . remain the best evidence that we have for anything that can offer at least some help for sufferers.”
Steven Lubet, “An Open Letter to Dr. Simon Wessely, Defender of the PACE Study,” The Faculty Lounge, November 14, 2016, www.thefacultylounge.org/2016/11/an-open-letter-to-dr-simon-wessely-defender-of-the-pace-study.html.
93 “the brain for that”: In later correspondence, Wessely told me that the reason we haven’t “cracked the problem yet” is “because the brain is bloody difficult, mate—if this was just immunology or muscle pathology, we would have it sorted. But it’s not.”
93 “2002 article in the Guardian”: Jerome Burne, “Battle Fatigue,” Guardian, March 29, 2002, www.theguardian.com/society/2002/mar/30/health.lifeandhealth.
95 “back to normal”: Sarah Boseley, “Study Finds Therapy and Exercise Best for ME,” Guardian, February 18, 2011, www.theguardian.com/society/2011/feb/18/study-exercise-therapy-me-treatment.
95 “an 80-year-old”: Ann Bowling, Matthew Bond, Crispin Jenkinson, and Donna L. Lamping, “Short Form 36 (SF-36) Health Survey Questionnaire: Which normative data should be used? Comparisons between the norms Provided by the Omnibus Survey in Britain, the Health Survey for England and the Oxford Healthy Life Survey,” Journal of Public Health Medicine 21, no. 3 (September 1999): 255–70.
96 “qualify as ‘recovered’”: A few technical details: The extensive press coverage about recovery came from two places. At the press conference when the Lancet study was first announced, one of the PACE researchers claimed that twice as many patients had gotten “back to normal” with CBT or exercise than without. In addition, a commentary accompanying the Lancet paper said that 30 percent met “a strict criterion for recovery.”
The Lancet paper itself, however, didn’t discuss recovery. Instead, it described the percentage of patients who were “within the normal range” on their fatigue and physical function scores. The “normal range,” however, is a statistical term that is unrelated to being “back to normal” or “recovered.” Nevertheless, that analysis was the basis for the claims in the press conference and commentary, and it provided the thresholds for fatigue and physical function scores I discuss.
Two years later, the researchers published their full analysis of recovery, in Psychological Medicine.
P. D. White, et al., “Recovery from chronic fatigue syndrome after treatments given in the PACE trial,” Psychological Medicine 43, no. 10 (October 2013): 2,227–35.
That paper’s claims were slightly more modest, reporting a 22 percent recovery rate for patients who received exercise or CBT, rather than 30 percent.
To be “recovered,” patients had to meet the same thresholds for fatigue and for physical function as in the “normal range” analysis in the Lancet. In addition, they had to meet two other criteria: Patients had to say they overall felt “much” or “very much” better, and they had to no longer qualify as having chronic fatigue syndrome. The latter sounds very impressive, but it excluded almost no participants who met the first three criteria.
All four of these criteria were much looser than the researchers had proposed before they started the trial.
96 “an accompanying commentary”: Gijs Bleijenberg and Hans Knoop, “Chronic fatigue syndrome: Where to PACE from here?” Lancet 377, no. 9768 (March 2011): 786–88. doi: 10.1016/S0140-6736(11)60172-4.
96 “hadn’t done these treatments”: Michael Sharpe, “Functional Symptoms and Syndromes,” Trends in Health and Disability 2002 (February 2012): 15–22.
96 “25 years earlier”: Anthony S. David, Simon Wessely, and Anthony J. Pelosi, “Postviral fatigue syndrome: time for a new approach,” British Medical Journal 296, no. 6623 (March 1988): 696–99.
96 “ideas about the illness”: Mary Dimmock’s Thirty Years of Disdain chronicles this history thoroughly. It’s available for free here: http://bit.ly/30-years-of-disdain.
96 “carefully argued letters”: Andrew James Kewley, “The PACE trial in chronic fatigue syndrome,” Lancet 377, no. 9780 (May 2011): 1832.
96 “and commentaries”: Alem Matthees, “Assessment of recovery status in chronic fatigue syndrome using normative data,” Quality of Life Research 24, no. 4 (April 2015): 905–7. doi: 10.1007/s11136-014-0819-0.
96 “in peer-reviewed journals”: For example, Tom Kindlon, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” Bulletin of the IACFS/ME 19, no. 2 (2011): 59–111 and Mark Vink, “The PACE Trial Invalidates the Use of Cognitive Behavioral and Graded Exercise Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Review,” Journal of Neurology and Neurobiology 2, no. 3 (March 2016): 1–12.
97 “greatest number of patients”: Wolfson Institute of Preventive Medicine, PACE trial frequently asked questions, 2011, www.wolfson.qmul.ac.uk/images/pdfs/pace/faq2.pdf.
97 “overwhelming majority of patients”: “Comparison of treatments for chronic fatigue syndrome—the PACE trial,” Health Report, April 18, 2011, www.abc.net.au/radionational/programs/healthreport/comparison-of-treatments-for-chronic-fatigue/2993296.
97 “majority of the requests”: www.whatdotheyknow.com/search/pace%20Trial/all.
97 “qualified as harassment”: This is one request from a patient who was denied on the grounds that it was “vexatious:” www.whatdotheyknow.com/request/fitness_data_for_p
ace_trial#outgoing-464451.
Later, the data request from psychologist James Coyne of the University Medical Center, Groningen, was denied on the same grounds: Alex Anderssen, “‘Vexatious’: King’s College London Dismisses James Coyne’s Request for PLOS ONE PACE Data,” December 12, 2015, www.meaction.net/2015/12/12/vexatious-kings-college-london-dismisses-james-coynes-request-for-plos-one-pace-data/.
97 “death threats to researchers”: Jenny Hope, “Scientists investigating ME get ‘death threats’ for investigating psychological causes,” Daily Mail, July 29, 2011, www.dailymail.co.uk/health/article-2020241/Scientists-investigating-ME-death-threats-investigating-psychological-causes.html.
Nigel Hawkes, “Dangers of research into chronic fatigue syndrome,” BMJ 342 (June 2011): d3780.
Michael Hanlon, “This man faced death threats and abuse. His crime? He suggested that ME was a mental illness,” Sunday Times, May 5, 2013, www.thesundaytimes.co.uk/sto/Magazine/Features/article1252529.ece.
97 “feel a lot safer”: Stefanie Marsh, “Interview with Professor Simon Wessely,” ME Association, August 6, 2011, www.meassociation.org.uk/2011/08/interview-with-professor-simon-wessely-the-times-6-august-2011/.
98 “research they agree with”: Nigel Hawkes, “Dangers of research into chronic fatigue syndrome,” BMJ 342 (June 2011): d3780.
99 “mistreating him”: Ean’s story: www.youtube.com/watch?v=cDeu_OlMivU.
Professional investigation: Caroline Richmond, “Isle of Man provides unique forum for presenting health care grievances,” Canadian Medical Association Journal 150, no. 1 (January 1994): 66–67.
Document showing Wessely’s involvement: Malcolm Hooper, “The Mental Health Movement: Persecution of Patients? A Consideration of the Role of Professor Simon Wessely and Other Members of the ‘Wessely School’ in the Perception of Myalgic Encephalomyelitis (ME) in the UK,” Background Briefing for the House of Commons Select Health Committee, December 2, 2003, www.mcs-international.org/downloads/009_mental_health_movement.pdf.
Through the Shadowlands Page 36
