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

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366 The section on “Future goals” discusses “Where do I go from here?; where do I start?; current goals; new activities; lifestyle changes and diversification; maintaining motivation and direction”. Participants are provided with “Notes on using the Future Goals sheet” which must include: • “Goal number: this is the number of the goal and indicates which goal has the highest priority • “Goal: a brief description of the goal • “How to record progress • “Time scale • “How realistic is the goal: this is a score from 0 – 10 • “Future goals: breaking down goals into manageable sections”. Next comes consideration of return to work or finding a new job, including employment and educational schemes. It is notable that both the CBT and GET participants’ Manuals place much emphasis on returning to work, but that the APT participants’ Manual does not. In the APT Therapists’ Manual, pages 105‐109 are a back‐to‐work hand‐out for participants, but the therapist is simply told on page 109: “This information can be given out to individual participant (sic) as required”, so it would seem that the issue of returning to work in the APT arm appears to be at the discretion of the therapist and not a central issue as in the CBT and GET arms of the trial. As in the CBT participants’ Manual, at the end of the GET participants’ Manual is a section entitled “Information for relatives, partners and friends”. Again, the authors do not even get the name correct: they refer to “chronic fatigue syndrome (CFS) / myalgic encephalitis (ME)” and the section is replete with misinformation, for example, one of the causes of “CFS/ME” is stated to be “Having high personal expectations and driving to do things ‘perfectly’, which is assumption stated as fact. Relatives, partners and friends are misinformed about “What keeps CFS/ME going”, and are told that being “out of condition”, “an irregular bedtime”, and “receiving advice from a variety of sources” all keep “the CFS/ME” going, but – inevitably – that GET can “aid recovery from CFS/ME” and that GET can “reverse” it (an assumption stated as fact). Relatives are encouraged to “get involved” and to “set aside a regular time each week to discuss how they (the participants) are getting on. This will give you the opportunity to reinforce their achievements” (even relatives must use “positive reinforcement”). As with CBT participants, relatives of GET participants are told that “Setbacks…are a ‘blip’ in the recovery phase and certainly do not mean that GET has failed”. It is untrue that setbacks are merely a blip in recovery from ME/CFS. Participants are further told that “setbacks” are temporary (“At these times, it is important to remind the person that setbacks are only temporary”), an assertion that is untrue because a relapse for many people with ME/CFS can last for months, years or even a lifetime. If the person has a relapse, relatives are told they must “Encourage them to read the appropriate sections of the manual in order to get back on track again”, which for a person with true ME could be contra‐indicated and therefore is potentially dangerous advice. Finally, relatives are told: “As long as a good balance of activity and rest is maintained, then recovery will be sustained”. This is an unproven assertion and is the hypothesis supposedly being tested in the MRC PACE Trial. This entire Manual for GET participants is full of misinformation, misrepresentation, bias, assumption presented as fact, prejudice, and alarming ignorance about ME/CFS. Even though ethics committees are primarily concerned with ethics and not with science, given what is known internationally about ME/CFS, it is incomprehensible how such a document received approval from any ethics committee.
Comments from someone who has undertaken GET 367 The comments below can be accessed at http://www.foggyfriends.org and they make extremely disturbing reading. “I know I probably shouldn’t be complaining because I have mild‐moderate ME and it could be far worse, but things haven’t been going great lately. “The worst bit is having doctors and professionals who write things off. The crunch came today when I went to see my physio who has been part of the PACE trial. We have had a difficult relationship since I started seeing her a while ago as I have struggled to follow her instructions better and how I should tell the whole world about about my ME because I need support. I have chosen not to tell my parents….Yet my physio has had very strong opinions on this choice of mine and won’t let the topic drop. “On a physical level I feel worse now than when I started seeing her. She is putting this down to my ‘poor’ management of my condition and the fact that I’m allegedly not following her instructions to the letter. I am trying, but my condition fluctuates so much that it is impossible to stick to a consistent routine and I am not pushing myself just for the sake of ticking her boxes. I am trying my best but it doesn’t seem to be good enough. “Today I had three massive lectures about different things. The appointment lasted for over an hour and I was shattered at the end of it. I feel terribly blamed and demoralised by the whole process. She told me I was ‘an intelligent woman who knew what I had to do to get better’ (since when did IQ equal health!)…She also told me I’m always far too negative and don’t recognise how far I’ve come. Personally I feel I am just honest and realistic about where I am. What is the point in lying? I spend my life putting on a cheerful front to other people and motivating myself with positives, but sometimes I think I need to say what it’s really like. “I feel like all I get are lectures about how I’m failing myself…I even find myself dressing up the truth to make myself look ‘better’, which for me is a sign that I’m feeling very criticised and belittled. “I just wanted to cry after the appointment. I have spent today feeling quite low and demoralised. I can’t help my state of health and I am not deliberately doing things that set me back….I keep detailed diaries about food intake, time, activity and mood but can’t find any patterns, even though I’m told there must be some. There just aren’t. “She has been promising me progress and better health, I just can’t find it. Perhaps it’s me after all. “….She tells me lots of success stories about other patients who have been through the GET programme and are now fully functioning. She tells me I can get there too…She is so positive about this that she isn’t at all tuned in to my needs and current state. I also think she’s too quick to look for causes of my setbacks when sometimes it’s just the natural fluctuation of my condition. The lectures I get are because she thinks she’s motivating and helping me, whereas I just feel told off and criticised. Who wouldn’t, when they are just told ‘You should do this; you shouldn’t do that; you need to be stricter with yourself or you won’t improve; you’ve got to get better at x,y and z; you’ve got to believe in this; you have to work harder at it; I don’t think you really believe in this and that’s why it’s not working’? “…I was told today that my physio doesn’t think she can help me any more as she’s taught me all she can so I’m going to have a telephone review in the New Year – and then be discharged, I guess. “…Re the PACE Trial…I just found out who’s involved and it says: ‘The PACE Trial is to be designed and managed by Professor Simon Wessely; that Dr Peter White, Michael Sharpe and Trudie Chalder will be centre leaders. So both Wessely and White are involved. As for Chalders (sic), her book about ‘Overcoming CFS’ is not even worth reading. “…I’ve spent today wondering if I really am too negative about my health…However, I’m just telling it like it is and it’s not as if I go around constantly moaning about it. In fact it’s the opposite, I usually hide it away and cope by myself.
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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
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
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Page 333 and 334: 333 “Therapist: I can understand
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Page 337 and 338: 337 However, as Chief Investigator,
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Page 361 and 362: 361 The authors summarise their adv
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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
Page 379 and 380: 379 Participants were to be given a
Page 381 and 382: “Budgeting Energy: � Evaluating
Page 383 and 384: Comments by participants in the PAC
Page 385 and 386: 385 Page 5 of the SSMC Manual infor
Page 387 and 388: 387 illness is non‐biological…
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
Page 397 and 398: 397 evidence for a specific persist
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
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Page 413 and 414: 413 “Fibromyalgia patients are in
Page 415 and 416: 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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