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

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304 prudence, warmth, sensitivity and perseverance….the Hippocratic tradition in medicine has been swept aside by the combined effects of changes in society, in particular, the commercialisation of the health system” (Overview of psychiatric ethics I: professional ethics and psychiatry. Australasian Psychiatry 2007:15:3:201‐206). Has this totalitarianism invaded medicine, especially psychiatry, in the UK and have the virtues required of psychiatrists been abandoned in their efforts to comply with the demands of their paymasters? Is it the case, as demonstrated in a TV documentary, that multi‐national corporations and not governments now control the world? Are powerful and influential psychiatrists who work within the Mental Health Movement linked to the multi‐national corporations that now dominate and control medical and research institutions and whose life‐blood is profit? (Politics isn’t working: the End of Politics. Cambridge academic Noreena Hertz presented evidence that multi‐national corporations are taking the place of elected governments. ITV Channel 4, 13 th May 2001). To the detriment of the sick, the deciding factor governing policies on medical research and on the management and treatment of patients is increasingly determined not by medical need but by economic considerations. Patients with ME/CFS are casualties of this corporate control. Given that biomedical research, including gene research, has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more apposite than in relation to the PACE Trial, yet the imperium granted to these psychiatrists is virtually insurmountable. On 28 th October 2006, Consultant Dermatologist Nick Hardwick from Mid‐Staffordshire General Hospital summed things up accurately: “Over the past few decades the practice of Medicine has moved from a basis of personal experience and understanding of the disease process and its treatment towards the application of authorised protocols and guidelines. (The) article raises concern about the situation in which an inadequate evidence base has become canonised into established guidelines, Government policy and incentivised practice. It takes a bold man indeed to challenge this set of Emperor’s clothes. Perhaps we need a forum to build up a sufficient groundswell of opinion to challenge the court tailors”. (Vested interests will always trump science. BMJ 2006:333:912‐915). It is salutary to recall the words of the Presiding Officer (Speaker) of the Scottish Parliament delivered at the ME Research UK international research conference on 25 th May 2007 in Edinburgh; Mr Fergusson MSP said he had been contacted by a constituent asking for help: “She’s had ME for some time and been refused Disability Living Allowance and the State support that comes along with that on the grounds that whilst she has been recognised as having ME, she has not sought or been given psychiatric treatment. Now that to my mind absolutely sums up the principal concerns of the Scottish Cross Party Group on ME, which is that the cold grip of psychiatry is still far too deeply rooted in the world of ME”. ( http://www.meactionuk.org.uk/Defiance_of_Science.htm ). Many doctors and ME/CFS patients alike hold the view that the Wessely School has been responsible for over two decades of the most blatant medical abuse of ME/CFS patients. One severely affected person wrote about the involvement of Wessely School members in the MRC PACE trial: “I think it profoundly disgraceful that any individual who has caused so much suffering to so many members of the public, including those affected by ME, is involved in this trial in any capacity” (letter to AfME, August 2007). This particular “school” of psychiatry has, in the eyes of the ME/CFS community, caused untold damage, not only to patients but to the discipline of psychiatry, because they believe that the Wessely School perpetuates psychiatry’s regrettable record of claiming unsustainable hypotheses as fact, to the harm of its victims, unknown numbers of whom have died. As Douglas Fraser, a professional violinist badly affected by ME/CFS since 1994, has written: “When (people with ME) are subjected to (this) type of professional abuse, one realises just how out of control and irresponsible
305 segments of the medical establishment have become. When science and rationality are so easily eschewed, you know what kind of society we are now living in”. The consequences of opposing Wessely School ideology can be dire. When in January 2006 an organised peaceful protest was mounted outside a public lecture on Gulf War Syndrome to be given by Professor Simon Wessely at Gresham College, London, some chilling incidents occurred. One day before the event, strange things had begun to happen. Staff at Gresham College began telling people that Wessely had cancelled his lecture. However, other information indicated that Wessely was secretly going ahead. It was said that Wessely claimed he had reason to believe he would be physically attacked. Total confusion ensued, with people returning home believing that the lecture had been cancelled, when in reality it was going ahead. At the event, the police were present and were photographing everyone present. The protest organisers had learned of Wessely’s public appearance only a week before the event but, on the day, they managed to display personal stories of people whose lives had been destroyed by Wessely’s ideas: some were harrowing, describing years of suffering, financial hardship, ridicule and abandonment by the NHS, family and friends as a result of Wessely’s theories. The protest organisers believed that by ignoring “the mountains of evidence about the physical causes of these syndromes, (Wessely) and his colleagues are personally responsible for suffering on a massive scale”, so they had set up a campaign called “Illness Denied”. On the day of the protest, the lead protester noticed unusual problems with her mobile phone. She also experienced problems with computer hacking (which in an official attempt to undermine her mental stability were ridiculed but which were later validated by an IT expert). The harassment included a threat placed on the internet directed at her children. She was subsequently arrested, with three police officers, two doctors, two social workers and a community psychiatric nurse arriving at her home unannounced with a warrant for her arrest. She was given no time to pack or to get in touch with a lawyer. She was then detained against her will under Section Two of the Mental Health Act 1983. She was kept on Pond Ward of the Central Middlesex Hospital for 30 days under appalling conditions. While she was under detention, her mother was suddenly taken ill and died a few days later; the protest organiser had to beg to be allowed out and was only permitted to see her mother accompanied by an escort in case she “escaped”. In her “Statement regarding my Detention”, the protest organiser wrote: “I feel that my experience raises very serious issues about the powers that psychiatrists, social workers, and other authorities have in our society to repress others on the basis of their political beliefs. It is now clear that there are enough people out there who do have the courage to face issues even when they are controversial or call into question ideas we take for granted – that we live in a democracy, that public health authorities always act in our best interests, that governments are there to protect us, that psychiatrists in the west never diagnose and treat people on the basis of their political beliefs, that the science of medicine is never subordinated to politics or the profit needs of corporate giants. I believe that the recent events will only serve to focus people’s minds more than ever on these issues”. The protest organiser was fortunate to have been supported by informed doctors, scientists, journalists, a peer of the realm and a very sharp, hard‐hitting team of solicitors (http://web.archive.org/web/20070928204222/http://www.lyme‐rage.info/elena/statejun06.html ). The above episode seems to have overtones of how Russia used to silence dissidents by giving them a psychiatric diagnosis and committing them to an institution, a situation that seems not to have disappeared in current times. In The Daily Telegraph on 13 th August 2007, Adrian Blomfield’s article “Labelled mad for daring to criticise the Kremlin” told a harrowing tale of “punitive psychiatry” and referred to “state psychiatrists”: “The Daily Telegraph has learnt of dozens of incidents that suggest that Russia’s psychiatric system is rapidly becoming as unsavoury as it was in Soviet times”. Blomfield wrote:“ ‘Once again psychiatrists see stubbornness in an individual as a sign of psychosis’ said Lyubov Vinogradova, the executive director of the Independent Psychiatrists’ Association. ‘If a person goes to court against a state institution or writes letters of complaint he is treated as a social danger and is in danger of incarceration’ ”.
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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
Page 253 and 254: 253 Pensions) and copied to the PAC
Page 255 and 256: 255 only one database. This will be
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Page 259 and 260: 259 • a copy of the original prop
Page 261 and 262: 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
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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
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Page 295 and 296: 295 • “People who present with
Page 297 and 298: 297 • have succeeded in making cl
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Page 301 and 302: 301 “ Attempting to come to a con
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Page 307 and 308: 307 could he require Primary Care T
Page 309 and 310: 309 The Judge said: “The ‘psych
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Page 313 and 314: 313 condition that is seen by many
Page 315 and 316: 315 17 th July: 1‐8 (Epub ahead o
Page 317 and 318: 317 The APT Manual for Participants
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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)
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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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“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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