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

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68 “This approach is quite inappropriate and positively harmful for many common health problems that do not have any good medical answer. The traditional sick role can then become a trap, in which the patient continues futile attempts to find a medical solution. “Conceptually, chronic pain, fatigue or comparable syndromes do not meet the criteria of severe and permanent impairments. Pragmatically, it is impossible to set any threshold for severity, while the epidemiology and the North American experience show they could possibly lead to explosive growth. For all these reasons, we would argue that they should not be regarded as severe and permanent impairments, but are better treated as potentially recoverable”. Then comes the possible explanation for the “eradication” of ME and the reclassification of CFS as a functional somatic (behavioural) syndrome: in order to qualify for benefits “the illness must be recognised by a respected body of medical opinion and in practice, conditions which are specifically mentioned in major classification systems such as the ICD‐10 or DSM‐IV are very likely to be accepted as being ‘clinically well recognised’ ”. In the Wessely School’s syllabus, “CFS/ME” is a mental (functional somatic) disorder. From this it seems certain that if “CFS/ME” were to be formally re‐categorised as a “mental” disorder in the major classification systems, the insurance industry would have cause to rejoice because, quoting Peter White, Waddell and Aylward say: “the insurance industry approach to total and permanent disability generally consists of … independent medical evidence that the claimant is suffering from a diagnosable functional disorder (and) the claimant has received at least two years of optimal medical treatment (OMT) by a recognised medical specialist. It is surprising how many claims fail to meet this criteria (sic). The commonest reasons for failure are that the consultant has not considered a biopsychosocial approach to rehabilitation”. Common sense asks why an informed consultant would refer for psychotherapy a patient with a classified neurological disorder who is clearly incapable of work and thus under their policy entitled to PHI payment purely in order to convince the patient that s/he does not have a classified neurological disorder and is capable of work, especially given that Professor Trudie Chalder herself is on record as acknowledging that: “Part of the problem of the BPS (biopsychosocial) model is that it is so broad and non‐specific to render it almost completely meaningless. It is theoretic and it doesn’t lead us anywhere” (Biopsychosocial Medicine, OUP 2005). The answer is to be found in the UNUMProvident literature (see Appendix IV) and in Waddell and Aylward’s book: “There is good evidence from the insurance industry that it is often more useful to have the independent examination (sic) carried out by a doctor qualified in disability assessment medicine or by a non‐medical health professional such as an occupational therapist or occupational psychologist”. For the avoidance of doubt, the training of occupational therapists and occupational psychologists does not qualify them to assess complex neuro‐immuno‐vascular disorders such as ME/CFS. In the same year that the book by Waddell and Aylward was published, on 22 nd August 2005 another of the Woodstock attendees, Professor Derick Wade from the University of Oxford and the Rivermead Rehabilitation Centre, Oxford, wrote to Dr Roger Thomas, Senior Medical Policy Adviser in the Benefit Strategy Directorate at the DWP advising that – despite the WHO classification ‐‐ ME/CFS is not a neurological disorder but a “non‐medical illness”. When challenged about his views by the person about whom he had written, on 7 th July 2006 Wade replied : “ME/CFS is not a neurological condition in that there is no pathology in the nervous system.
69 “The sick role does have advantages in that Society provides support to people who are ill…a not‐ inconsiderable advantage… “Why should all symptoms arise from disease…..Even if research such as that on the websites you gave does find abnormalities, it does not prove a causal link….Why are so many people with ME so afraid of the idea that there is no pathology?… I will end by re‐stating that: I think that ME/CFS is a major problem for people with it and for Society but I do believe that: people with so‐called ME/CFS do not have any disease as the primary or sole cause of their illness (and) it is wrong to fit ME/CFS into a biomedical model of illness”. Together with Professor Tim Peto (co‐leader of the Oxford PACE Trial Centre), Professor Wade attended a meeting of the Oxfordshire Priorities Forum on 21 st May 2008 at Jubilee House, Oxford Business Park South, the Minutes of which record: “There is increasing evidence from good quality trials to support CBT and or GET in the management of CFS/ME (and) there is evidence for the effectiveness in children and adults…Inpatient care for CFS/ME is not supported by available evidence… The Oxford PF agreed that GET and CBT are clinically and cost effective and should be recommended in the treatment of CFS/ME”. Strategies employed by the Wessely School to achieve their goal appear to include the portrayal of people with ME/CFS as malingerers. The frequency with which people with this illness are denied benefits and are forced to undertake a lengthy and stressful appeals process indicates that the Wessely School has been successful, even though the DWP’s own Guidelines for DLA decision‐makers states: “Between a quarter and a half of people with CFS/ME are in part‐time or full‐time employment or education. When compared to people with other diseases like diabetes mellitus or arthritis seen in hospital clinics, many people with CFS/ME are on average more disabled”. This does not sound like people who are lazy or work‐shy. Those who are able to sustain some employment whilst ill may sacrifice many other aspects of their life just to remain in employment. As the Countess of Mar noted: “In a recent national consultation with 1,162 ME sufferers, one of the correspondents wrote: ‘The Government seem to think people actually LIKE to live their lives on benefits. The genuine claimants don’t want to be on benefits but have no choice’. Why is it that I still get letters from acutely distressed people with CFS/ME who are being hounded by the DWP to attend interviews and who are threatened with loss of benefits if they do not comply?” (http://www.tinyurl.com/ygpf6hp ). The strategy of portraying people with ME/CFS as malingerers is extremely damaging to sick people who already experience prejudice, ignorance and medical arrogance; as Millen et al pointed out in 1998: “Often CFS sufferers are stigmatised, or fear such labelling, as a ‘malingerer’ or are treated as having other psychological and somatic properties attributed to their ‘undefined illness’ ” (International Journal of Sociology and Social Policy 1998:18:7/8:127‐147). These common experiences of patients do not accord with the Wessely School’s notion that patients with “CFS/ME” are seeking sympathy, time off work, or other advantages of the sick role. As the Gibson Inquiry’s Report of November 2006 made plain: “The lack of easy confirmation of the organic nature of the illness…lends itself to… invasion by those who are not genuine sufferers. The existence of such patients and the inability of the medical profession to separate them from genuine patients with CFS/ME enhances the view that all patients with CFS/ME are neurotic and/or not genuinely ill” (http://erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf). On 10 th September 2008 a conference entitled “Beyond Pathways to Work: health, work and well‐being” was held at the Royal Society of Medicine. It was described as “this important conference which follows three earlier successful conferences on Pathways to Work held by the Royal Society of Medicine in London and Cardiff during the past four years”.
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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
Page 17 and 18: 17 In January 2003 the wife of Rich
Page 19 and 20: 19 biomedical aspects of ME/CFS wer
Page 21 and 22: “Social factors 21 “Several of
Page 23 and 24: 23 Despite the substantial evidence
Page 25 and 26: 25 as possessed by devils or spirit
Page 27 and 28: 27 However, as Crombez G et al poin
Page 29 and 30: 29 Professor Anthony David’s resp
Page 31 and 32: 31 From these beliefs of the PACE T
Page 33 and 34: 33 warning about dependence being e
Page 35 and 36: 35 This is unequivocal: according t
Page 37 and 38: 37 Those studies, however, have bee
Page 39 and 40: 39 The answer may be found in the f
Page 41 and 42: 41 than giving actual numbers of pa
Page 43 and 44: 43 deconditioning caused their illn
Page 45 and 46: 45 Legitimate access has been obtai
Page 47 and 48: 47 Goldstein’s search took a litt
Page 49 and 50: 49 says about GET: “GET will be b
Page 51 and 52: 51 The whole concept of “a CBT mo
Page 53 and 54: 53 International concern about the
Page 55 and 56: 55 The CISSD project was the brainc
Page 57 and 58: 57 are changed in IBS lends credibi
Page 59 and 60: 59 (http://www.entretiens‐du‐ca
Page 61 and 62: 61 As Jonathan Rutherford, now Prof
Page 63 and 64: 63 There are many who would profoun
Page 65 and 66: 65 The term “CFS/ME” was carefu
Page 67: 67 ill‐health and disability is d
Page 71 and 72: 71 Such is the influence of the Wes
Page 73 and 74: 73 Editors of broadsheet newspapers
Page 75 and 76: 75 Collins J who found that the UK
Page 77 and 78: 77 The “Invitation to join the PA
Page 79 and 80: 79 On 10 June 1988 Wessely provided
Page 81 and 82: 81 “There is a record of a confid
Page 83 and 84: 83 (6) Another, more recent illustr
Page 85 and 86: 85 psychological hypotheses of caus
Page 87 and 88: 87 Of particular note are the follo
Page 89 and 90: 89 • “Two forms of treatment…
Page 91 and 92: 91 patients with chronic fatigue st
Page 93 and 94: 93 • Another UNUM policyholder, A
Page 95 and 96: 95 “Over the twenty years I have
Page 97 and 98: 97 a functional somatic syndrome),
Page 99 and 100: 99 protein and serum amyloid A (whi
Page 101 and 102: 101 their cortisol response, in tha
Page 103 and 104: 103 exposures. Responsibility for t
Page 105 and 106: 105 illness (and) these biases have
Page 107 and 108: 107 diagnoses before (ME)CFS onset,
Page 109 and 110: 109 He noted that: “The most extr
Page 111 and 112: 111 According to Professor Nancy Kl
Page 113 and 114: 113 95% have abnormal cognitive‐e
Page 115 and 116: 115 In 2003 a UK study of skeletal
Page 117 and 118: 117 “ME/CFS describes a disorder
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119 proposed for treatment‐resist
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121 page 381: “Arrhythmias are fr
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1995 123 “The use of cardiopulmon
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1999 125 “This study examined the
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127 cardiac output. This present st
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2005 129 On 10 th April 2005 Carol
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131 The next system to be compromis
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2005 133 Researchers at the US Cent
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135 In ME/CFS, these serious issues
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137 confirms reduced functional cap
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139 haemodynamics and an increased
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141 perhaps all, of the symptoms of
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2000 143 In 2000, the CFIDS Associa
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145 includes haemodynamic assessmen
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2003 147 German researchers Siessme
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149 producing any evidence of damag
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151 English and Australian reports
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2006 153 “(ME)CFS is a poorly def
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155 These recommendations note that
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1990 157 “In order to characteris
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1994 159 “The chronic fatigue imm
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161 symptoms not currently in the C
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1999 163 An article from researcher
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2003 165 “(ME)CFS is an increasin
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167 Commenting on this paper, Dr Ne
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2007 169 “For decades, (ME)CFS pa
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171 Documented abnormalities in the
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1996 173 De Lorenzo et al noted tha
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175 identifying biomarkers…It is
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177 analysed the gene expression in
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1955 179 Acheson described and comp
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181 (In the light of the discovery
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183 psychiatric symptoms…as commo
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185 The presence of the LMW RNase L
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187 to investigating the bioavailab
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189 the blood of patients with AIDS
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191 displayed by (ME)CFS patients.
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193 Moreover, recent research has s
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195 In August 1991, together with c
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197 “The data do not support the
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199 Lerner Research Institute who i
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201 It is regrettable that the UK M
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203 Notably, Dr Stuart Le Grice, he
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205 that the majority of patients f
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207 “Just because one is blessed
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209 They would do well to remember
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211 itself said at the time: “stu
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213 muscle, endocrine and lymphoid
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215 “ ‘I don’t take the Briti
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217 “This is a major concern give
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219 “The availability of sensitiv
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221 impinge upon medical decisions
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SECTION 3: Consideration of the MRC
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225 such as multiple sclerosis in w
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227 of 600 participants. Issue 3 of
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229 Dr Gabrielle Murphy is/was part
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231 trials…are open to the charge
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233 Given that the Oxford criteria
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235 maximised by the collaboration
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237 c) I had been told by Dr. X (th
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The Investigators’ Reasons for th
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241 In his presentation entitled
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243 Peter White, however, asserted
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245 To many people, it is incompreh
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247 In her communication of 16 th J
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249 a) emotional lability….b)…d
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Undue influence on the PACE Trial o
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253 Pensions) and copied to the PAC
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255 only one database. This will be
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257 Conflicts of interest of those
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259 • a copy of the original prop
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261 There is another curious aspect
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Fraudulent research (Cargo cult sci
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265 It seems that, in comparison wi
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267 Initially, the Trial Investigat
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269 Information on other abnormalit
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271 It is notable that advising exe
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273 “Outcome choice bias: Sometim
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275 say that they have physical sym
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277 consent requires that the parti
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279 If in the PACE Trial the Wessel
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281 “Enhanced negative‐feedback
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283 health problem. There is no des
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The Handbook continues: 285 “Main
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287 Mark Seddon, a member of Labour
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289 Section B covers “Basic princ
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291 To combine all states of “med
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293 PACE Trial includes those who d
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295 • “People who present with
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297 • have succeeded in making cl
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299 White treating this as a purely
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301 “ Attempting to come to a con
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303 “CFS/ME” on State benefits
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305 segments of the medical establi
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307 could he require Primary Care T
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309 The Judge said: “The ‘psych
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311 they so desperately need and de
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313 condition that is seen by many
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315 17 th July: 1‐8 (Epub ahead o
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317 The APT Manual for Participants
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319 defining feature of ME/CFS (the
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321 PACE Trial participants and the
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323 Despite the fact that this was
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325 was available even before the p
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327 Physical factors, such as infec
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329 someone to change their fundame
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331 “A purely physical attributio
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333 “Therapist: I can understand
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335 On page 12 the authors state:
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337 However, as Chief Investigator,
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339 • “In all individuals, musc
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341 consistent with the assumption
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343 “6. The ‘wrong’ kind of s
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Quotations from the Therapists’ M
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347 Bavinton, Clark and White discu
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349 In the section of the GET Manua
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351 to be a consequence “of too m
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353 Phase 3 (page 54 of the Manual)
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355 going viral infection); should
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Quotations from the Participants’
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359 increase in bone density; think
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361 The authors summarise their adv
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363 Next comes a section on the Bor
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365 Such advice seems culpable. It
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Comments from someone who has under
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Quotations from the Therapists’ M
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371 doing at the time); there must
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373 are the “solutions” that ar
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375 The section beginning on page 4
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377 Three months after the end of s
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379 Participants were to be given a
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“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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