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

More documents

Recommendations

Info

408 Many people believe that there is the same pressing need for the removal of those currently in charge of the ME/CFS programme in the UK because, as Professor Holgate affirmed, it is time to get away from old models and to use proper science. This need is supported by patients who posted messages on the ME Association’s Facebook site (spelling and syntax adjusted for clarity): Post # 1, 30 th January 2010: “The MRC are supposedly trying to help sufferers of CFS/ME so why is Prof White on this panel; he is a very bad seed. I have never met a single patient who has a good word to say about him and never met anyone who has been cured by his ‘treatment’. He just doesn’t deserve to be there…he also helped set up the Frenchay CFS/ME service in Bristol which is the most awful place I have ever had the misfortune to end up in; not only did they not help, they made my health situation a lot worse”. Post # 2, 30 th January 2010: “I had the misfortune of attending Bart’s CFS Clinic headed by Prof White and I never returned after the first visit. They tried very forcefully to get me to try GET even after explaining how severely affected I am and how hard it was for me to attend Bart’s…How Prof White can advise the DWP while he works for a medical insurance company is beyond comprehension. If that is not a conflict of interest, then what is?”. Post # 4, 30 th January 2010: “Prof White is, I’m sure, very happy with the way the MRC is funding research: as well as giving millions to fund the PACE Trial, they have also funded other projects headed by Charlotte Clark and Kam Bhui in the institute he (PDW) is involved with, while the MRC has not been funding research projects which might challenge his views. So he will be happy with the status quo while most people including Prof Holgate think the MRC needs to change with regard to ME and CFS and the grants they are funding. I think it would be good if all the people on any committee knew where Peter White was coming from” (http://www.facebook.com//group.php?v=feed&story_fbid=226500923256&gid=68630803256#/topic.php?uid =68630803256&topic=12993 ). Indeed so. As Nobel laureate Professor Richard Feynman famously said about the nature of the scientific process: “First you guess…Then you compute the consequences. Compare the consequences to the experience. If it disagrees with the experience, then the guess is wrong. In that simple statement is the key to science. It doesn’t matter how beautiful your guess is…If it disagrees with experience, it’s wrong. That’s all there is to it” (http://www.staticearth.net/copern.htm ). As demonstrated, the Wessely School not only ignore the biomedical evidence that ME/CFS is not a behavioural disorder, they also ignore their own evidence that their preferred interventions are not successful; can they therefore be said to be practising science or blindly following an ideology?
409 APPENDIX I: Dr Tony Johnson, Deputy Director of the MRC Biostatistical Unit, Cambridge The UK ME/CFS community noted with some surprise the involvement of Dr Tony Johnson in the PACE Trial because his published views on psychiatric trials are already known. In 1998 he published a major review entitled “Clinical trials in psychiatry: background and statistical perspective” (Statistical Methods in Medical Research 1998:7:209‐234) in which he noted the existence of studies produced by psychiatrists that claim “inordinate enthusiasm” for certain therapies. Dr Tony Johnson is the son‐in‐law of Dr Elizabeth Dowsett, who was formerly Medical Advisor to and President of the ME Association. Correspondence exists between an ME/CFS sufferer and Dr Johnson himself, but which also involves Dr Anthony C Peatfield, Head of MRC Corporate Governance and Policy. The correspondence arose from Johnson’s Quinquennial Report for the MRC’s Biostatistical Unit’s progress report for the years 2001 to 2006 that was placed on the website of the MRC Biostatistics Unit (BSU). Taken from the BSU’s Quinquennial Review of 2006, one part of which states: “Our influence on policy‐ makers has largely been indirect, through scientistsʹ work on advisory committees, in leading editorials, in personal correspondence with Ministers, Chairs or Chief Executives (such as of Healthcare Commission or NICE), Chief Medical Officers and Chief Scientific Advisers, or through public dissemination when the media picks up on statistical or public health issues that our publications have highlighted. “The Unitʹs scientists must remain wary of patient‐pressure groups. Tony Johnsonʹs work on chronic fatigue syndrome (CFS), a most controversial area of medical research, has had to counter vitriolic articles and websites maintained by the more extreme charities and supported by some patient groups, journalists, Members of Parliament, and others, who have little time for research investigations”. This contention that “CFS” research is beset with vitriol and “extreme” charities was re‐iterated by Johnson himself in his own Report within the Quinquennial Review; under “Chronic Fatigue Syndrome (CFS), with P White, T Chalder (London), M Sharpe (Edinburgh)”, Johnson’s Report stated: “CFS is currently the most controversial area of medical research and characterised by vitriolic articles and websites maintained by the more extreme charities supported by some patient groups, journalists, Members of Parliament, and others, who have little time for research investigations. In response to a DH (Department of Health) Directive, MRC called for grant proposals for investigations into CFS as a result of which two RCTs (PACE and FINE) were funded and have started despite active campaigns to halt them. I am part of the PACE study, a multi‐centre study comparing cognitive behaviour therapy, graded exercise training, and pacing in addition to standardised specialist medical care (SSMC), with SSMC alone in 600 patients. I have been fully engaged in providing advice about design of PACE and I am a member of both Trial Management Group and Trial Steering Committee. I am not a PI (Principal Investigator) because of familial involvement with one of the charities, a perspective that has enabled me to play a vital role in ensuring that all involved in the PACE trial maintain absolute neutrality to all trial treatments in presentation, documentation and assessment”. Johnson’s Report on “CFS” research rang alarm bells within the ME/CFS community, since it openly stated that he, personally, had a “vital” role to play in ensuring what ought to have been taken for granted in any MRC trial, namely the “absolute neutrality” of the PACE trial. Upon seeing this on the MRC Biostatistics Unit’s (BSU) website, an ME/CFS sufferer wrote first to the MRC Biostatistics Unit and then to Dr Johnson himself, requesting the names and details of all the charities, patient groups, journalists, Members of Parliament and “others” who have little time for research investigations, together with references for all the vitriolic articles and websites mentioned on the MRC BSU website.
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 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 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),
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
Page 119 and 120:
119 proposed for treatment‐resist
Page 121 and 122:
121 page 381: “Arrhythmias are fr
Page 123 and 124:
1995 123 “The use of cardiopulmon
Page 125 and 126:
1999 125 “This study examined the
Page 127 and 128:
127 cardiac output. This present st
Page 129 and 130:
2005 129 On 10 th April 2005 Carol
Page 131 and 132:
131 The next system to be compromis
Page 133 and 134:
2005 133 Researchers at the US Cent
Page 135 and 136:
135 In ME/CFS, these serious issues
Page 137 and 138:
137 confirms reduced functional cap
Page 139 and 140:
139 haemodynamics and an increased
Page 141 and 142:
141 perhaps all, of the symptoms of
Page 143 and 144:
2000 143 In 2000, the CFIDS Associa
Page 145 and 146:
145 includes haemodynamic assessmen
Page 147 and 148:
2003 147 German researchers Siessme
Page 149 and 150:
149 producing any evidence of damag
Page 151 and 152:
151 English and Australian reports
Page 153 and 154:
2006 153 “(ME)CFS is a poorly def
Page 155 and 156:
155 These recommendations note that
Page 157 and 158:
1990 157 “In order to characteris
Page 159 and 160:
1994 159 “The chronic fatigue imm
Page 161 and 162:
161 symptoms not currently in the C
Page 163 and 164:
1999 163 An article from researcher
Page 165 and 166:
2003 165 “(ME)CFS is an increasin
Page 167 and 168:
167 Commenting on this paper, Dr Ne
Page 169 and 170:
2007 169 “For decades, (ME)CFS pa
Page 171 and 172:
171 Documented abnormalities in the
Page 173 and 174:
1996 173 De Lorenzo et al noted tha
Page 175 and 176:
175 identifying biomarkers…It is
Page 177 and 178:
177 analysed the gene expression in
Page 179 and 180:
1955 179 Acheson described and comp
Page 181 and 182:
181 (In the light of the discovery
Page 183 and 184:
183 psychiatric symptoms…as commo
Page 185 and 186:
185 The presence of the LMW RNase L
Page 187 and 188:
187 to investigating the bioavailab
Page 189 and 190:
189 the blood of patients with AIDS
Page 191 and 192:
191 displayed by (ME)CFS patients.
Page 193 and 194:
193 Moreover, recent research has s
Page 195 and 196:
195 In August 1991, together with c
Page 197 and 198:
197 “The data do not support the
Page 199 and 200:
199 Lerner Research Institute who i
Page 201 and 202:
201 It is regrettable that the UK M
Page 203 and 204:
203 Notably, Dr Stuart Le Grice, he
Page 205 and 206:
205 that the majority of patients f
Page 207 and 208:
207 “Just because one is blessed
Page 209 and 210:
209 They would do well to remember
Page 211 and 212:
211 itself said at the time: “stu
Page 213 and 214:
213 muscle, endocrine and lymphoid
Page 215 and 216:
215 “ ‘I don’t take the Briti
Page 217 and 218:
217 “This is a major concern give
Page 219 and 220:
219 “The availability of sensitiv
Page 221 and 222:
221 impinge upon medical decisions
Page 223 and 224:
SECTION 3: Consideration of the MRC
Page 225 and 226:
225 such as multiple sclerosis in w
Page 227 and 228:
227 of 600 participants. Issue 3 of
Page 229 and 230:
229 Dr Gabrielle Murphy is/was part
Page 231 and 232:
231 trials…are open to the charge
Page 233 and 234:
233 Given that the Oxford criteria
Page 235 and 236:
235 maximised by the collaboration
Page 237 and 238:
237 c) I had been told by Dr. X (th
Page 239 and 240:
The Investigators’ Reasons for th
Page 241 and 242:
241 In his presentation entitled
Page 243 and 244:
243 Peter White, however, asserted
Page 245 and 246:
245 To many people, it is incompreh
Page 247 and 248:
247 In her communication of 16 th J
Page 249 and 250:
249 a) emotional lability….b)…d
Page 251 and 252:
Undue influence on the PACE Trial o
Page 253 and 254:
253 Pensions) and copied to the PAC
Page 255 and 256:
255 only one database. This will be
Page 257 and 258:
257 Conflicts of interest of those
Page 259 and 260:
259 • a copy of the original prop
Page 261 and 262:
261 There is another curious aspect
Page 263 and 264:
Fraudulent research (Cargo cult sci
Page 265 and 266:
265 It seems that, in comparison wi
Page 267 and 268:
267 Initially, the Trial Investigat
Page 269 and 270:
269 Information on other abnormalit
Page 271 and 272:
271 It is notable that advising exe
Page 273 and 274:
273 “Outcome choice bias: Sometim
Page 275 and 276:
275 say that they have physical sym
Page 277 and 278:
277 consent requires that the parti
Page 279 and 280:
279 If in the PACE Trial the Wessel
Page 281 and 282:
281 “Enhanced negative‐feedback
Page 283 and 284:
283 health problem. There is no des
Page 285 and 286:
The Handbook continues: 285 “Main
Page 287 and 288:
287 Mark Seddon, a member of Labour
Page 289 and 290:
289 Section B covers “Basic princ
Page 291 and 292:
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
Page 305 and 306:
305 segments of the medical establi
Page 307 and 308:
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
Page 343 and 344:
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
Page 351 and 352:
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
Page 365 and 366: 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
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
Page 405 and 406: 405 ME/CFS have reduced blood volum
Page 407: 407 PACE Trial is about “Health e
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
show all

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

Create successful ePaper yourself

Delete template?

Save as template?