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

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380 Page 18 asks: “What is Recreation?”. It continues: “Recreational activities are what you may have previously described as relaxation…for example going to the pub after a busy day at work to unwind, watching the TV, and gardening….Recreational activities…will, in time as your body allows, need to be reintroduced as part of your programme of rest and activity”. “What is rest? Rest is a way to bank and restore energy”. “What is Stress? Stress can be anything that disturbs your status quo. This can be mental or physical”. “What are stressful events? A stressful event can be anything that you perceive as threatening, change in your life or disturbing emotions…The list is endless”. “What reaction can stress cause? ….If stress continues for a long time, the body may be unable to maintain its balance and may ‘break down’. This may take the form of chronic conditions….”. “What role can stress play in CFS/ME? Stress may be involved in two ways. “1. It may help to cause or trigger the illness…. “2. Once the syndrome is established stress may be the cause of some of the symptoms. Certain complaints such as nervousness, muscle tension….palpitations and sweating – are all symptoms common in CFS/ME”. “What can I do about stress? There are two things you can do; “1. You can try to identify and remove the sources of stress in your life “2.You can help your body to maintain its balance and prevent symptoms of stress. This can be done in various ways. These include learning…the importance of effective relaxation through the use of techniques such as…relaxation”(sic). Next comes a page entitled “Participant Handout Managing your Sleep”, which states: “Drinking too much coffee and tea may also cause difficulty with sleep for some people with CFS/ME….As you rebalance your activity and rest, you may notice an improvement in your sleep pattern”. Page 47 is entitled “Participant Handout Ergonomics and Activity Stations”. Advice given includes: “Some tools and technology can increase independence such as scooters, walking sticks and disabled parking permits” (this differs from Peter White’s 2006 submission to NICE, where he objected to the provision of such aids for people with “CFS/ME” – http://tinyurl.com/2fpjxc). Page 49 of the Manual is entitled “Participant Handout Activity Analysis. Activity analysis is taking an activity and breaking it down into its component parts….Whenever possible, simplify the activity…For example throw laundry downstairs in a bag or pillowcase rather than carrying it”. On page 50, participants are advised: “Don’t forget to bank and budget for energy: “Banking Energy: � Activity Analysis � Activity Modification � Rest and Relaxation � Balancing work, rest and play
“Budgeting Energy: � Evaluating priorities � Evaluating standards � Planning your day”. 381 Page 51 is a blank record sheet for “Energy requirement”. Page 52 is a blank record sheet for “Activity Station Analysis Sheet”. Page 53 is a blank record sheet for “Activity Modification Worksheet”. Pages 54–58 are descriptions of Ergonomics (described as “the study of ‘the relationship between workers and their environment’ “). Page 59 is about “Work Simplification”. “What does Work Simplification mean?”. Participants are advised that it means: “Preparation; Performance of the task itself; Clean‐up/putting things away”. Participants are then told about “Basic Principles of Work Simplification”. Page 61 (another Participant Handout) summarises “Adaptive Pacing Therapy Aims and Methods”; these are listed as: “Establish a baseline “Introduce proper rest and relaxation “Save and budget energy “Improve sleep “Live within your limits/baseline activity “Use ergonomic technique “Devise a way to recognise energy expansion…Think of the last time that you had a ‘better’ period of functioning. How did you know you had improved?”. Next comes a section on how to deal with “Pressure from Self and Others to Deviate from Adapted (sic) Pacing”, which consists of quotations from the AfME (2003) Report. It is notable that no mention is made of the fact that the main pressure to deviate from pacing (ie. resting as necessary) comes from the Wessely School, which over the last two decades has influenced the attitudes of GPs, as well as press reporting of the disease, which is known to have influenced attitudes of friends and family. On page 64 of the Manual the participant is advised that “Problem solving will not be new to you; it is something we all do on a daily basis in relation to the tasks we need to perform”. Participants must: “Identify the problem. “What are the available solutions? (as in the APT Therapists’ Manual, participants are advised to try “outlandish” solutions). “Prioritise. “Select the most acceptable and workable solution. “Practice the strategy. “Evaluate the effective strategy and re‐visit the problem cycle”.
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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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Page 335 and 336: 335 On page 12 the authors state:
Page 337 and 338: 337 However, as Chief Investigator,
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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
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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’
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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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Page 367 and 368: Comments from someone who has under
Page 369 and 370: Quotations from the Therapists’ M
Page 371 and 372: 371 doing at the time); there must
Page 373 and 374: 373 are the “solutions” that ar
Page 375 and 376: 375 The section beginning on page 4
Page 377 and 378: 377 Three months after the end of s
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Page 383 and 384: Comments by participants in the PAC
Page 385 and 386: 385 Page 5 of the SSMC Manual infor
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Page 389 and 390: 389 • have the main symptom of fa
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 399 and 400: 399 To imply that patients can reco
Page 401 and 402: 401 (8) The Investigators did not i
Page 403 and 404: 403 (15) The Investigators and some
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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
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
Page 425 and 426: 425 with what look like exhaustive
Page 427 and 428: 427 To date, MPs’ postbags contin
Page 429 and 430: 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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