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46 The Psychiatry section continues: “Sharpe (Oxford) (ie. Michael Sharpe, one of the three PACE Trial PIs) described a trial of cognitive and behavioural therapy which he is just starting at the Warneford Hospital. The aim is to help patients re‐evaluate and, if appropriate, change, unhelpful feelings about their performance and symptoms, and thus break the vicious circle. He admitted that the trial was a purely pragmatic approach without theoretical foundation” (it is interesting to see confirmation in an MRC document – and from Sharpe himself ‐‐ that this study [BMJ 1996:312:22‐26], one of the most‐relied upon in the “evidence‐base” for CBT in the 2007 NICE Clinical Guideline, was merely pragmatic and without theoretical foundation). The section titled “The Treatment Process” is particularly notable: “The first duty of the doctor is to support as much useful function as possible and avoid the legitimisation of symptoms and reinforcement of disability”. The Section “General discussion” records: “Shorter felt that from a historical perspective, CFS was an example of a disordered mind/body relationship that would not survive…It was important to step back and look at the whole phenomenon of somatization”. “Summarising, the Chairman (Kleinman) predicted that in 10 years time…the central issues in the CFS field would be social rather than medical or scientific, partly driven by the economics and funding of the disability systems in various countries”. Here, again, is evidence that the problem of ME/ CFS is seen in terms of economic costs to the nation and not in terms of alleviating suffering. Numerous sections of this document are redacted and censored under FOI exemption 40 (2) and are marked “CLOSED UNTIL 2071”. Section 40 (2) of the Freedom of Information Act usually relates to the protection of personal information; this being so, a perfectly straightforward telephone inquiry was recently made to the National Archives at Kew with a view to establishing why so many sections of a report of a scientific conference should be deemed to be “personal information” and thus closed to the public. Having been advised by staff at Kew to speak to their own FOI department with this query, the questioner duly requested to be transferred to that department, but when the subject of the query was known, there was a long delay before the questioner was put through, not to the FOI department as advised and requested, but to a female member of staff who seemed very agitated and who said that she dealt with these particular enquiries. The questioner was barely permitted to get a word in and was constantly interrupted by this member of staff, who seemed to be reading at great speed from a prepared text. When the questioner was finally able to ask why a report of a scientific meeting should be deemed to contain personal information, the result was a further lecture about how important it is to protect personal information. No explanation was provided in answer to the question posed, even when it was pointed out that personal information in the form of names of presenters at the symposium had not been redacted. Given the unconvincing sermon on the need to protect “personal information”, it is notable that other documents in the MRC file held at the National Archives make no attempt to do so, for example, on 14 th February 1997, Karen Finney of the MRC sent a memo to Dr Bryant and Dr Coriat at the MRC, in which she wrote: “Chronic fatigue syndrome (CFS) and Mr Paul Hulme (sic). On 15 th January 1997 a query concerning MRC support for ME was referred to me…I agreed to speak to the member of the public, Mr Paul Hulme (giving his address and ex‐directory telephone number, personal information which was not redacted and is thus available to any member of the public who makes an application to see the document in question)…Mr Hulme wished to know if MRC was funding any specific work on ME/CFS…In reply, I said I thought the MRC did not receive many proposals on ME/CFS…However, Mr Hulme was aware of a study supported by MRC and carried out at the Institute of Psychiatry. He was not happy with the fact that MRC had supported this work because ME ‘was a real illness and not all in our mind’….Following my telephone conversation, I asked Mr Goldstein (CAG) to run a search for applications on CFS/ME that we had received over the last year, funded or declined….Mr
47 Goldstein’s search took a little while due to other pressing matters…Between 15/1 and 7/2 Mr Hulme rang on average twice a week to ask about progress. When Mr Hulme rang on 7/2 I let him know, in general terms…that during 1996 we had received four applications which had been declined on scientific grounds…Mr Hulme requested that I put the result of the search in writing…I am aware that the follow‐up letter requires careful drafting…Mr Hulme telephoned again on 13/2 to say that he needed my letter urgently (as) he intended to fax a letter to Ken Calman (Sir Kenneth Calman, UK Chief Medical Officer) concerning the Council’s lack of support for the area, and also other issues surrounding the RCP review (the 1996 Joint Royal College’s Report CR54). Dr Davies and the Press Office have been kept informed of developments. I think that a carefully worded letter of reply from someone higher up in the Office might put this matter to rest”. It is hardly surprising that the ME/CFS community believes that there is no intention to address the psychosocial bias of the Wessely School and the damage that such bias causes to those who are physically sick, especially given that the MRC Portfolio in Mental Health Research stated “Mental health in this instance covers…CFS/ME” (Neurosciences Mental Health Board Strategy and Portfolio Overview Group Scoping Study, January 2005). When challenged, the MRC subsequently stated that CFS/ME was classified as a mental health problem for a “pragmatic” reason that was claimed to be “related to the grants classification associated with the activities of one section of the office….The Mental Health Scoping Study included the PACE and FINE trials on the basis of the type of intervention being assessed, namely psychological interventions…”. The letter dated 6 th December 2005 was from Dr Robert Buckle, who is now a member of the PACE Trial Steering Committee. Members of MRC Boards are appointed to act “as a core body of scientific advisors, assessing applications to the MRC”. The MRC’s refusal to accept the international biomedical evidence about ME/CFS may be related to the fact that in 2002 / 2003 the following Wessely School members were appointed to MRC Boards: Professor Trudie Chalder; Professor Anthony Cleare; Professor Anthony David; Professor Anne Farmer, Professor Michael Sharpe, Professor Peter White; Professor Richard Bentall; Professor Philip Cowen; Professor Til Wykes and Dr SM Laurie, with Professors Simon Wessely and Francis Creed having been recent members (http://www.mrc.ac.uk ). Wessely was a member of no less than three MRC Boards: the Health Services and Public Health Research Board; the Neurosciences and Mental Health Group and the Monitoring and Evaluating Group (MESG). As Dr Jonathan Kerr, Sir Joseph Hotung Senior Lecturer in Inflammation, Department of Cellular and Molecular Medicine, Hon. Consultant in Microbiology, St George’s University of London, stated at the Invest in ME Conference held in London in 2006: “It is rather sad that the MRC does not fund any biological studies such as we are doing, and I think the current…consideration of grant applications to the MRC on CFS is currently with the Neurosciences and Mental Health Board…and I think that (this) immediately biases the decision‐making process because that panel is made up predominantly I believe of psychiatrists. It would be desirable if this could be reclassified (by the MRC) such that there would be money available…for biological approaches…It is a fact that currently the MRC does not fund any biological approaches”. At the 2007 Invest in ME Conference, Dr Kerr repeated his message: “We have applied several times to the MRC and on each occasion we were invited to submit those applications and on each occasion we got scores typically of 9, 8 and 3 – the 3 score was obviously from a psychiatrist who was complaining about our way of enrolling the patients, the criteria we had etc…David Tyrell told me the MRC will never fund biomedical research in CFS because they are in the thrall of the psychiatrists – so far, he has been right”. DVDs of both these Conferences are available from www.investinme.org The late Dr David Tyrell, CBE, FRS, DSc, FRCP, FRCPath was Chairman of the UK National Task Force on CFS/PVFS/ME whose 1994 Westcare/DoH Report was rejected by the Wessely School and gave rise to their
Page 1 and 2: MAGICAL MEDICINE: HOW TO MAKE A DIS
Page 3 and 4: Section 3: Consideration of the MRC
Page 5 and 6: 5 MYALGIC ENCEPHALOMYELITIS/CHRONIC
Page 7 and 8: Introduction MAGICAL MEDICINE: HOW
Page 9 and 10: 9 associations purely in order to
Page 11 and 12: 11 “It’s not an illness that pe
Page 13 and 14: 13 release that is not found in hea
Page 15 and 16: 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: 45 Legitimate access has been obtai
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 and 68: 67 ill‐health and disability is d
Page 69 and 70: 69 “The sick role does have advan
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),
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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
Page 167 and 168:
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
Page 233 and 234:
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
Page 243 and 244:
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
Page 251 and 252:
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
Page 257 and 258:
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
Page 281 and 282:
281 “Enhanced negative‐feedback
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283 health problem. There is no des
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The Handbook continues: 285 “Main
Page 287 and 288:
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
Page 293 and 294:
293 PACE Trial includes those who d
Page 295 and 296:
295 • “People who present with
Page 297 and 298:
297 • have succeeded in making cl
Page 299 and 300:
299 White treating this as a purely
Page 301 and 302:
301 “ Attempting to come to a con
Page 303 and 304:
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
Page 309 and 310:
309 The Judge said: “The ‘psych
Page 311 and 312:
311 they so desperately need and de
Page 313 and 314:
313 condition that is seen by many
Page 315 and 316:
315 17 th July: 1‐8 (Epub ahead o
Page 317 and 318:
317 The APT Manual for Participants
Page 319 and 320:
319 defining feature of ME/CFS (the
Page 321 and 322:
321 PACE Trial participants and the
Page 323 and 324:
323 Despite the fact that this was
Page 325 and 326:
325 was available even before the p
Page 327 and 328:
327 Physical factors, such as infec
Page 329 and 330:
329 someone to change their fundame
Page 331 and 332:
331 “A purely physical attributio
Page 333 and 334:
333 “Therapist: I can understand
Page 335 and 336:
335 On page 12 the authors state:
Page 337 and 338:
337 However, as Chief Investigator,
Page 339 and 340:
339 • “In all individuals, musc
Page 341 and 342:
341 consistent with the assumption
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343 “6. The ‘wrong’ kind of s
Page 345 and 346:
Quotations from the Therapists’ M
Page 347 and 348:
347 Bavinton, Clark and White discu
Page 349 and 350:
349 In the section of the GET Manua
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351 to be a consequence “of too m
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’
Page 359 and 360:
359 increase in bone density; think
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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365 Such advice seems culpable. It
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
Page 379 and 380:
379 Participants were to be given a
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“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
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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
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399 To imply that patients can reco
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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
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
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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