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

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426 anxiety and guilt of people with serious conditions by suggesting that they are causing their own illnesses, when all along they are suffering from insufficiently understood but real diseases. “The personal adviser will have a worrying degree of power over the lives of people who are by definition vulnerable. GPs will no longer be looked to for independent, expert assessments. “Sadly, serious disease and disability cannot be glossed out of existence by platitudes like ‘work is the best therapy’. “People will not find comfort in the Government’s refusal to acknowledge the medical reality of their conditions, or their own huge efforts to cope with these. “In effect, though claiming to address the future, the DWP is turning the clock back to a time before National Insurance, when the cost of sickness was borne by the individual and the family. The cost to those people and their families will be incalculable”. Professor Ravetz followed up her 2006 document with an article in The New Statesman published on 1 st May 2008 entitled “Is Labour abolishing illness?” (http://www.newstatesman.com/politics/2008/05/work‐ benefit‐claimants‐reform): “We are told that we are footing an outrageously escalating bill for 2.4 million people, a million of whom shouldn’t be on the benefit at all. The true picture is somewhat different. The unreported version is that only 1.4 million of the 2.4 million actually receive any payment (and) the audited estimate of fraud is under 1 per cent – the lowest of any part of the social security system. “A main selling point of the reform was the great savings it would bring. Delivery is being farmed out to private agencies paid by results – which means, of course, the setting of targets. The next few years will be a bad time to succumb to a serious disease, particularly a neurological one that does not have obvious outward symptoms. “People must be healthier, which proves that huge numbers are exploiting a slack and obsolete system. Who is to blame? It can only be the self‐indulgent, who fancy themselves sicker than they really are, and complacent GPs who let them think they are too ill to work. “The Government’s declared mission is …to overturn a culture based on the ‘medical model’ of illness. “Doctors –‐ so often the refuge of desperate people trying to find out what is wrong with them – should as far as possible be excluded from the process. “Deliberate rejection of the ‘medical model’ deprives us of all we might have learned (from the wealth of data available) of the impact of illness on our society. “I have scratched my head long and hard over this reform…because so much of its theory and rhetoric contradicts my own experience of chronically and seriously ill family members…and years of involvement in action groups for chronic fatigue conditions. All this has impressed me with the courage of many who live with horrible complaints, the sheer hard work involved in their day‐to‐day coping, their relentless search for any amelioration, let alone cure. “I have witnessed, too, and at close quarters, the hurt and stress of living difficult lives in a perpetual culture of disbelief and threat, where some of the most valiant are blamed for their conditions and conflated with the alleged ‘can’t work, won’t work’ unemployed. “For the message of the reform that comes across is that a person is valued only as a productive unit….those too ill to work are outside society, and money spent on them is wasted. Sickness, disablement and inability to work have no place in a modern society – they can’t and shouldn’t be afforded”.
427 To date, MPs’ postbags continue to bulge with horror stories from their constituents about the same issue: • “Swiss Life forced her to see a psychiatrist with known views on the causation of ME by threatening to stop her payments; but she has been refused sight of the psychiatristʹs report” • “I am alarmed to hear from hon. Members that insurance companies can insist on a treatment set out by their medical assessors, who are doctors employed by them” • “I was interested to learn that UNUM has advised the Benefits Agencyʹs medical division. That explains some of the unimpressive decisions made by doctors on behalf of the Benefits Agency”. Mindful of the fact that the Wessely School (and hence the NICE Guideline on “CFS/ME”) specifically recommend that no tests should be carried out to confirm the diagnosis, it should be recalled that if the correct investigations were permitted to be carried out in the UK (immune, HPA axis and mitochondrial function; enteroviral serology; SPECT scans etc) then the psychiatrists’ paymasters could not legitimately disregard such evidence and company profits would plummet. The insurance industry is determined that this must not happen: UNUM’s “Chronic Fatigue Syndrome Management Plan” (dated 4 th April 1995 and authored by Dr Carolyn L Jackson) makes this clear: “UNUM stands to lose millions if we do not move quickly to address this increasing problem”. Fourteen years later, that is exactly what UNUMProvident and other insurers served by the Wessely School are doing most effectively. The MRC PACE Trial Manuals appears to show just how this plan is being put into action.
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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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Page 377 and 378: 377 Three months after the end of s
Page 379 and 380: 379 Participants were to be given a
Page 381 and 382: “Budgeting Energy: � Evaluating
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Page 385 and 386: 385 Page 5 of the SSMC Manual infor
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Page 391 and 392: 391 dispute/negotiation of benefits
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 401 and 402: 401 (8) The Investigators did not i
Page 403 and 404: 403 (15) The Investigators and some
Page 405 and 406: 405 ME/CFS have reduced blood volum
Page 407 and 408: 407 PACE Trial is about “Health e
Page 409 and 410: 409 APPENDIX I: Dr Tony Johnson, De
Page 411 and 412: 411 “I have advised many clinical
Page 413 and 414: 413 “Fibromyalgia patients are in
Page 415 and 416: 415 who do not agree to take part i
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 429 and 430: 429 APPENDIX VI: The Wessely’ Sch
Page 431 and 432: 431 They explain that historically,
Page 433 and 434: 433 Why would two PACE Trial Princi
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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