MAGICAL MEDICINE: HOW TO MAKE AN ILLNESS ... - Invest in ME

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314 useful in predicting poor outcome than the number of symptoms, disability and distress”. Moreover, Sharpe’s assertion contrasts with the evidence of Rosata & Reilly who, unlike Sharpe, correlate the level of benefit with the degree of disability (Health & Social Care in the Community 2006:14:294‐301). In their Editorial in the Journal of Psychosomatic Research (Is there a better term than ‘Medically unexplained symptoms?’ 2010:68:5‐8, Epub ahead of print), two of the MRC PACE Trial Principal Investigators, Professors Sharpe and White, clearly state their intention to claim medically unexplained symptoms (MUS ‐‐ in which they include ME/CFS) as psychosomatic disorders by stating that the term “functional somatic disorder” fulfils most of their own criteria for re‐branding somatoform disorders (those categories being “bodily distress or stress syndrome”, “psychosomatic or psychophysical disorder”, and “functional syndrome or disorder”). Sharpe and White et al continue: “All too often, these patients receive one‐sided, mostly purely biomedical…treatments….Although some existing treatment facilities include both biomedical and psychological therapies…they are not appropriate for …the majority of patients with the type of symptoms with which we are concerned here. Therefore, some specific treatment facilities have been developed (eg. Chronic Fatigue Clinics in the UK)….The terms…’psychosomatic’ or ‘psychophysical’ are helpful in providing a positive explanation of the symptoms…Alternatively, the term ‘functional somatic syndrome’ allows explanations…in terms of altered brain functioning…demonstrating that the symptoms are ‘real’ and yet changeable by alteration in thinking and behaviour as well as by a psychotropic drug”. There could be no clearer confirmation that the UK “CFS” Clinics allegedly for patients with ME/CFS that were set up under the guidance of Professor Anthony Pinching were and remain intended to change patients’ thinking and behaviour, which vindicates the countless patients whose damaging experiences and legitimate concerns have been collated by Research into ME (RiME NHS Clinics Folder ‐‐ www.erythos.com/RiME ). In an article in the New York Times that was published before the PACE Trial began (27 th August 2002: “Behaviour: Like Drugs, Talk Therapy Can Change Brain Chemistry”), Richard Friedman MD –‐ a psychiatrist who directs the Psychopharmacology Clinic at the New York Weill Cornell Medical Centre – stated “Psychotherapy alone has been largely ineffective for diseases where there is strong evidence of structural, as well as functional, brain abnormalities. It seems that if the brain is severely disordered, then talk therapy cannot alter it”. As there are structural brain abnormalities documented in the ME/CFS literature since at least 1992 (see Section 2 above), one of which being the significant loss of grey matter in the brain with irreversible loss of grey cells, especially in Brodmann’s area 9, (which may indicate major trauma to the brain), then the chance of cognitive behavioural therapy being effective in ME/CFS is probably zero. Indeed, it was reported by Professor Leonard Jason at the Reno Conference that one group of patients did not benefit from cognitive behavioural interventions: this was the subset whose laboratory investigations showed they had increased immune dysfunction and low cortisol levels. As the data discussed by Friedman was known about in 2002 (the same year that the UK CMO’s Working Group Report was published), it must be asked why this knowledge has been disregarded by the Wessely School psychiatric lobby, especially given that they knew in 2003 – from their own research – that people who responded to CBT had baseline urinary cortisol levels close to normal, whereas those who did not respond had baseline levels below normal (quoted by Jason LA, Fletcher MA et al. Tropical Medicine and Health 2008:36:23‐32) and that “those who were most impaired on HPA functioning might have been the least able to improve with graded activity interventions” (paper presented by Anthony J Cleare at the meeting towards understanding the cellular and molecular mechanisms of medically unexplained fatigue, 2003: Cold Spring Harbor Laboratory, New York). As pointed out by Tom Kindlon (Co‐Cure ACT: 7 th January 2010), although known about in 2003, this finding was not published until 2009 (Roberts AD, Wessely S, Chalder T, Cleare AJ et al. Psychol Med 2009:
315 17 th July: 1‐8 (Epub ahead of print) despite the fact that another part of that study was published in 2004 (British Journal of Psychiatry 2004:184:136‐141). As Kindlon notes, if the knowledge that the efficacy of CBT/GET might depend on cortisol levels, had this knowledge been made public prior to publication of the NICE Guideline in 2007, then the Guideline could not have “sold” CBT/GET as being suitable for all patients with “CFS/ME”. Given what is already known about the inherent dangers of CBT/GET for those with ME/CFS (especially the known effects of graded exercise as an inducer of oxidative stress and the effects of incremental aerobic exercise on the cardiovascular problems known from the early part of the twentieth century to be an integral feature of authentic ME/CFS), on what ethical grounds can those already crushed by such a heavy illness burden as that imposed by ME/CFS be subjected ‐‐‐ despite denials, in some cases by misinformation and coercion – to a management regime that seems to have no hope of beneficial results? On 10 th January 2010 the BBC’s World Service broadcast a programme “Animals and Us” (One Planet, 02.30 – 03.00) in which Professor Lowell Levin, Professor Emeritus and Lecturer at Yale University’s School of Public Health (who also serves as a senior consultant to the WHO) was forceful: he said that the pharmaceutical and associated industries make money from keeping myths going and that they make “profits of a magnitude hard to conceptualise”. He was clear: “There’s too much money to be made in falsifying the causes and the cures”. This raises once again the disturbing question: in whose best interests is the MRC PACE Trial being undertaken?
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MAGICAL MEDICINE: HOW TO MAKE A DIS
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Section 3: Consideration of the MRC
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5 MYALGIC ENCEPHALOMYELITIS/CHRONIC
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Introduction MAGICAL MEDICINE: HOW
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9 associations purely in order to
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11 “It’s not an illness that pe
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13 release that is not found in hea
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15 “The second clinical implicati
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17 In January 2003 the wife of Rich
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19 biomedical aspects of ME/CFS wer
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“Social factors 21 “Several of
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23 Despite the substantial evidence
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25 as possessed by devils or spirit
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27 However, as Crombez G et al poin
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29 Professor Anthony David’s resp
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31 From these beliefs of the PACE T
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33 warning about dependence being e
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35 This is unequivocal: according t
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37 Those studies, however, have bee
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39 The answer may be found in the f
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41 than giving actual numbers of pa
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43 deconditioning caused their illn
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45 Legitimate access has been obtai
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47 Goldstein’s search took a litt
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49 says about GET: “GET will be b
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51 The whole concept of “a CBT mo
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53 International concern about the
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55 The CISSD project was the brainc
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57 are changed in IBS lends credibi
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59 (http://www.entretiens‐du‐ca
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61 As Jonathan Rutherford, now Prof
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63 There are many who would profoun
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65 The term “CFS/ME” was carefu
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67 ill‐health and disability is d
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69 “The sick role does have advan
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71 Such is the influence of the Wes
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73 Editors of broadsheet newspapers
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75 Collins J who found that the UK
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77 The “Invitation to join the PA
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79 On 10 June 1988 Wessely provided
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81 “There is a record of a confid
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83 (6) Another, more recent illustr
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85 psychological hypotheses of caus
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87 Of particular note are the follo
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89 • “Two forms of treatment…
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91 patients with chronic fatigue st
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93 • Another UNUM policyholder, A
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95 “Over the twenty years I have
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97 a functional somatic syndrome),
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99 protein and serum amyloid A (whi
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101 their cortisol response, in tha
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103 exposures. Responsibility for t
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105 illness (and) these biases have
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107 diagnoses before (ME)CFS onset,
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109 He noted that: “The most extr
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111 According to Professor Nancy Kl
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113 95% have abnormal cognitive‐e
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115 In 2003 a UK study of skeletal
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117 “ME/CFS describes a disorder
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119 proposed for treatment‐resist
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121 page 381: “Arrhythmias are fr
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1995 123 “The use of cardiopulmon
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1999 125 “This study examined the
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127 cardiac output. This present st
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2005 129 On 10 th April 2005 Carol
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131 The next system to be compromis
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2005 133 Researchers at the US Cent
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135 In ME/CFS, these serious issues
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137 confirms reduced functional cap
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139 haemodynamics and an increased
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141 perhaps all, of the symptoms of
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2000 143 In 2000, the CFIDS Associa
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145 includes haemodynamic assessmen
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2003 147 German researchers Siessme
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149 producing any evidence of damag
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151 English and Australian reports
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2006 153 “(ME)CFS is a poorly def
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155 These recommendations note that
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1990 157 “In order to characteris
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1994 159 “The chronic fatigue imm
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161 symptoms not currently in the C
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1999 163 An article from researcher
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2003 165 “(ME)CFS is an increasin
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167 Commenting on this paper, Dr Ne
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2007 169 “For decades, (ME)CFS pa
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171 Documented abnormalities in the
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1996 173 De Lorenzo et al noted tha
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175 identifying biomarkers…It is
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177 analysed the gene expression in
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1955 179 Acheson described and comp
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181 (In the light of the discovery
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183 psychiatric symptoms…as commo
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185 The presence of the LMW RNase L
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187 to investigating the bioavailab
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189 the blood of patients with AIDS
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191 displayed by (ME)CFS patients.
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193 Moreover, recent research has s
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195 In August 1991, together with c
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197 “The data do not support the
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199 Lerner Research Institute who i
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201 It is regrettable that the UK M
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203 Notably, Dr Stuart Le Grice, he
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205 that the majority of patients f
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207 “Just because one is blessed
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209 They would do well to remember
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211 itself said at the time: “stu
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213 muscle, endocrine and lymphoid
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215 “ ‘I don’t take the Briti
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217 “This is a major concern give
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219 “The availability of sensitiv
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221 impinge upon medical decisions
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SECTION 3: Consideration of the MRC
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225 such as multiple sclerosis in w
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227 of 600 participants. Issue 3 of
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229 Dr Gabrielle Murphy is/was part
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231 trials…are open to the charge
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233 Given that the Oxford criteria
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235 maximised by the collaboration
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237 c) I had been told by Dr. X (th
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The Investigators’ Reasons for th
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241 In his presentation entitled
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243 Peter White, however, asserted
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245 To many people, it is incompreh
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247 In her communication of 16 th J
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249 a) emotional lability….b)…d
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Undue influence on the PACE Trial o
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253 Pensions) and copied to the PAC
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255 only one database. This will be
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257 Conflicts of interest of those
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259 • a copy of the original prop
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261 There is another curious aspect
Page 263 and 264: Fraudulent research (Cargo cult sci
Page 265 and 266: 265 It seems that, in comparison wi
Page 267 and 268: 267 Initially, the Trial Investigat
Page 269 and 270: 269 Information on other abnormalit
Page 271 and 272: 271 It is notable that advising exe
Page 273 and 274: 273 “Outcome choice bias: Sometim
Page 275 and 276: 275 say that they have physical sym
Page 277 and 278: 277 consent requires that the parti
Page 279 and 280: 279 If in the PACE Trial the Wessel
Page 281 and 282: 281 “Enhanced negative‐feedback
Page 283 and 284: 283 health problem. There is no des
Page 285 and 286: The Handbook continues: 285 “Main
Page 287 and 288: 287 Mark Seddon, a member of Labour
Page 289 and 290: 289 Section B covers “Basic princ
Page 291 and 292: 291 To combine all states of “med
Page 293 and 294: 293 PACE Trial includes those who d
Page 295 and 296: 295 • “People who present with
Page 297 and 298: 297 • have succeeded in making cl
Page 299 and 300: 299 White treating this as a purely
Page 301 and 302: 301 “ Attempting to come to a con
Page 303 and 304: 303 “CFS/ME” on State benefits
Page 305 and 306: 305 segments of the medical establi
Page 307 and 308: 307 could he require Primary Care T
Page 309 and 310: 309 The Judge said: “The ‘psych
Page 311 and 312: 311 they so desperately need and de
Page 313: 313 condition that is seen by many
Page 317 and 318: 317 The APT Manual for Participants
Page 319 and 320: 319 defining feature of ME/CFS (the
Page 321 and 322: 321 PACE Trial participants and the
Page 323 and 324: 323 Despite the fact that this was
Page 325 and 326: 325 was available even before the p
Page 327 and 328: 327 Physical factors, such as infec
Page 329 and 330: 329 someone to change their fundame
Page 331 and 332: 331 “A purely physical attributio
Page 333 and 334: 333 “Therapist: I can understand
Page 335 and 336: 335 On page 12 the authors state:
Page 337 and 338: 337 However, as Chief Investigator,
Page 339 and 340: 339 • “In all individuals, musc
Page 341 and 342: 341 consistent with the assumption
Page 343 and 344: 343 “6. The ‘wrong’ kind of s
Page 345 and 346: Quotations from the Therapists’ M
Page 347 and 348: 347 Bavinton, Clark and White discu
Page 349 and 350: 349 In the section of the GET Manua
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Page 353 and 354: 353 Phase 3 (page 54 of the Manual)
Page 355 and 356: 355 going viral infection); should
Page 357 and 358: Quotations from the Participants’
Page 359 and 360: 359 increase in bone density; think
Page 361 and 362: 361 The authors summarise their adv
Page 363 and 364: 363 Next comes a section on the Bor
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365 Such advice seems culpable. It
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Comments from someone who has under
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Quotations from the Therapists’ M
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371 doing at the time); there must
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373 are the “solutions” that ar
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375 The section beginning on page 4
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377 Three months after the end of s
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379 Participants were to be given a
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“Budgeting Energy: � Evaluating
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Comments by participants in the PAC
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385 Page 5 of the SSMC Manual infor
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387 illness is non‐biological…
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389 • have the main symptom of fa
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391 dispute/negotiation of benefits
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393 Appendix 6: Summary of Therapie
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395 There can be no doubt that, for
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397 evidence for a specific persist
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399 To imply that patients can reco
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401 (8) The Investigators did not i
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403 (15) The Investigators and some
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405 ME/CFS have reduced blood volum
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407 PACE Trial is about “Health e
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409 APPENDIX I: Dr Tony Johnson, De
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411 “I have advised many clinical
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413 “Fibromyalgia patients are in
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415 who do not agree to take part i
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417 Appendix III: Dr Melvin Ramsay
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419 • “It is not only people in
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421 “It will be imperative that h
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423 “It is important to understan
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425 with what look like exhaustive
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427 To date, MPs’ postbags contin
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429 APPENDIX VI: The Wessely’ Sch
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431 They explain that historically,
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433 Why would two PACE Trial Princi
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435 • deniers engage in “comple
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APPENDIX VIII: Two FINE Trial Case
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439 After four months, Miss C’s h
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441 What an extraordinary claim: wh
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