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

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432 benefit receipt ‐‐ are important. Even though they admit that their model cannot be tested, they have stated that the dismantling of social support, including benefits on which sick people rely, may be necessary for “recovery”. How does the removal of vital support assist recovery in any disorder? Deary et al continue: “the evidence does support the conclusion that MUS in general, and IBS and CFS specifically, are multi‐factorial conditions caused and perpetuated by several distinct processes…the research bears out the over‐ arching CBT hypothesis that the autopoietic interaction of distinct but linked systems could serve to produce physical symptoms in the absence of physical pathology”, a statement that seems to reveal the extent of the authors’ lack of biomedical knowledge about ME/CFS. Deary et al state: “In CFS inconsistent and reduced activity, disturbed sleep and catastrophic beliefs regarding activity and symptoms are the most commonly identified set of factors and therapeutic targets” (commonly identified and targeted by whom? Certainly not by biomedical scientists and clinicians). In the section that is specifically on chronic fatigue syndrome, the authors state: “It is hard to disentangle the active ingredients in these treatments (CBT and GET). The CBT tends to involve pacing, graded increases in activity, sometimes exercise, work on a variety of cognitions including perfectionist beliefs, catastrophic illness beliefs and schema work. The GET trials provide a relatively more focused intervention, and we could easily conclude that the reversal of deconditioning is the effective component of this form of treatment”. Given the previous well‐documented hostility of the Wessely School towards rest and pacing, not only in the literature but also in the press and in the magazines of the patients’ charities, the authors’ claim about pacing in their 2007 paper is noteworthy, as it seems to be only since they were awarded millions of pounds sterling for their PACE Trial that they have revised their attitude towards it and have recorded their changed attitude in an article published during the life of the PACE Trial. Deary et al say: “We suggest that we are now at the stage where research should pay more attention to some of the components of the model and their interaction…The CBT model of MUS offers a previously undescribed illness mechanism maintaining a distinct group of disorders that we might call autopoietic conditions. Treatment is aimed at…dismantling the autopoietic mechanism by making changes in target areas”. Having noted that Hotopf (a colleague and frequent co‐author with Wessely) has compared the role of doctors in MUS to the role of parents of sick children, and having stated that “illness related beliefs have also emerged as potentially important factors in the maintenance of symptoms”, Deary et al end their paper thus: “Hotopf (2004) has drawn our attention to the vital role that both doctors and parents (most people with ME/CFS are middle‐aged and their parents are deceased) can play in the development, or prevention, of MUS…The right advice derived from a collaboratively constructed model of symptoms experience could be crucial in preventing or ameliorating MUS. In the CBT model, we may just have the means to do this”. Deary et al make no mention that in 1996 Scheper and Scheper argued convincingly that the autopoietic system theory as developed by Maturana and Varela is unscientific (Behavioural Science: January 1996:41:1) and that the autopoietic theory is ignored in contemporary biology because the theory’s core constructs cannot be determined, which means that it cannot be empirically tested. Scheper and Scheper concluded that the autopoietic theory has no explanatory power (ie. theoretical models that cannot be empirically tested do not have explanatory power, because any theoretical model that claims to provide explanations of empirical phenomena must be testable). Scheper and Scheper are clear; having noted that the Maturana and Varela autopoietic concept “receives much attention across the behavioural sciences” but having carried out an autopsy on autopoiesis, they conclude about those who adhere to the notion of autopioesis: “we believe that they should rethink their use of it. The version of autopoiesis as proposed by Maturana and Varela is unscientific, which means that it cannot be used as a suitable reference in scientific endeavours”.
433 Why would two PACE Trial Principal Investigators and a “First wave” CBT therapist who was involved both with the design of the PACE Trial and with the Manuals have resorted to a theory that was shown to have been discredited eleven years before their own paper was published? A further question might be to ask if there were any Wessely School members acting as referees for that issue of Clinical Psychology Review? In slide 71 of his powerpoint presentation “Why David Healy is wrong” (Searching for Gold Standards: http://www.lse.ac.uk/collections/BIOS/pdf/rcts/Wessely.pdf), Simon Wessely himself noted that in 1996 (the same year that the autopoiesis theory was discredited), Clare Francis, a round‐the‐world yachtswoman who developed ME and who is President of the charity Action for ME, went on record thus: “Psychiatry is opinion dressed up as science”. If papers such as this one by key people in the PACE Trial are the essence of psychiatry, it is not difficult to agree.
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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
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Fraudulent research (Cargo cult sci
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265 It seems that, in comparison wi
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267 Initially, the Trial Investigat
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269 Information on other abnormalit
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271 It is notable that advising exe
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273 “Outcome choice bias: Sometim
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275 say that they have physical sym
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277 consent requires that the parti
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279 If in the PACE Trial the Wessel
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281 “Enhanced negative‐feedback
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283 health problem. There is no des
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The Handbook continues: 285 “Main
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287 Mark Seddon, a member of Labour
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289 Section B covers “Basic princ
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291 To combine all states of “med
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293 PACE Trial includes those who d
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295 • “People who present with
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297 • have succeeded in making cl
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299 White treating this as a purely
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301 “ Attempting to come to a con
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303 “CFS/ME” on State benefits
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305 segments of the medical establi
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307 could he require Primary Care T
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309 The Judge said: “The ‘psych
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311 they so desperately need and de
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313 condition that is seen by many
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315 17 th July: 1‐8 (Epub ahead o
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317 The APT Manual for Participants
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319 defining feature of ME/CFS (the
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321 PACE Trial participants and the
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323 Despite the fact that this was
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325 was available even before the p
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327 Physical factors, such as infec
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329 someone to change their fundame
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331 “A purely physical attributio
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333 “Therapist: I can understand
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335 On page 12 the authors state:
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337 However, as Chief Investigator,
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339 • “In all individuals, musc
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341 consistent with the assumption
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343 “6. The ‘wrong’ kind of s
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Quotations from the Therapists’ M
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347 Bavinton, Clark and White discu
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349 In the section of the GET Manua
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351 to be a consequence “of too m
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353 Phase 3 (page 54 of the Manual)
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355 going viral infection); should
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Quotations from the Participants’
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359 increase in bone density; think
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361 The authors summarise their adv
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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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Page 393 and 394: 393 Appendix 6: Summary of Therapie
Page 395 and 396: 395 There can be no doubt that, for
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Page 407 and 408: 407 PACE Trial is about “Health e
Page 409 and 410: 409 APPENDIX I: Dr Tony Johnson, De
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Page 417 and 418: 417 Appendix III: Dr Melvin Ramsay
Page 419 and 420: 419 • “It is not only people in
Page 421 and 422: 421 “It will be imperative that h
Page 423 and 424: 423 “It is important to understan
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Page 427 and 428: 427 To date, MPs’ postbags contin
Page 429 and 430: 429 APPENDIX VI: The Wessely’ Sch
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Page 435 and 436: 435 • deniers engage in “comple
Page 437 and 438: APPENDIX VIII: Two FINE Trial Case
Page 439 and 440: 439 After four months, Miss C’s h
Page 441 and 442: 441 What an extraordinary claim: wh
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