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

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146 The hypothalamus of ME/CFS patients shows functional abnormalities different from those in depressed patients. Our data suggest that brainstem hypoperfusion in ME/CFS patients could be due to an organic abnormality” (DC Costa et al; Q J Med 1995:88:767‐773). 1995 “Many neurological diseases produce symptoms of intense fatigue and muscle pain. Abnormalities in cerebral perfusion were seen on visual reporting of the SPECT images in more than half of the patients with (ME)CFS. Perfusion defects were not consistently localised to any one region of the brain, being found in the frontal, temporal, occipital and parietal regions, nor were the defects always unilateral. (ME)CFS is an established, severe and debilitating illness. We have found visual evidence of cerebral perfusion defects in all regions of the brain. This is confirmed by the objective quantitative analysis which demonstrates that there is a greater variability in perfusion pattern of patients with (ME)CFS compared to normal subjects” (J Patterson et al; EOS‐ J Immunol Immunopharmacol 1995:XV:1‐2:53‐58). 1998 D Di Giuda, G Racciatti et al found that “(ME)CFS is a severely disabling illness. Regional brain perfusion impairment (mainly hypoperfusion) was found in 83.9% of (ME)CFS patients. This study confirmed previous reports of brain perfusion impairment in (ME)CFS, providing objective evidence of central nervous system dysfunction”. (“Brain SPET in Chronic Fatigue Syndrome”: Fourth AACFS International Research & Clinical Conference, Mass: USA). 2001 Cook DB, Natelson BH et al from the Department of Neurosciences, New Jersey Medical School, reported: “Some have suggested that (ME)CFS is a ‘functional somatic syndrome’ in which symptoms are inappropriately attributed to a serious illness. However, brain magnetic resonance imaging (MRI) data suggest that there may be an organic abnormality associated with (ME)CFS. (Our) results demonstrate that the presence of brain abnormalities in (ME)CFS are significantly related to subjective reports of physical function and that (ME)CFS subjects with MRI brain abnormalities report being more physically impaired than those without brain abnormalities” (Int J Neurosci 2001:107(1‐2):1‐6). 2002 A study by Puri et al tested the hypothesis that (ME)CFS is associated with altered cerebral metabolite in the frontal and occipital cortices and concluded: “Our results suggest that there may be an abnormality of phospholipid metabolism in the brain in (ME)CFS” (Acta Psychiatr Scand 2002:106(3):224‐226). As Dr Charles Shepherd, Medical Advisor to the ME Association, commented: “These results add further weight to recently reported perfusion studies which suggest that there may be pathophysiological abnormalities in the cerebral cortex of ME/CFS patients” (Co‐Cure MED: 30 th August 2002). 2002 Researchers in Japan (Kuratsune et al) reported that their findings “suggest that the levels of biosynthesis of neurotransmitters through acetylcarnitine might be reduced in some brain regions of (ME)CFS patients” (NeuroImage 2002:17(3):1256‐1265). 2003 Using proton magnetic resonance spectroscopy to study the metabolic functions of the basal ganglia in (ME)CFS patients, Chaudhuri et al reported: “A highly significant increase in the spectra from choline‐containing compounds was seen in the (ME)CFS patient group” (Neuroreport 2003:14(2):225‐228).
2003 147 German researchers Siessmeier et al used 18‐fluorodeoxyglucose positron emission tomography (FDG‐PET) to evaluate cerebral glucose metabolism in (ME)CFS and concluded: “PET may provide valuable information in helping to separate CFS patients into subpopulations with and without apparent alterations in the central nervous system” (JNNP 2003:74(7):922‐928). 2005 Lange and Natelson et al from New Jersey Medical School studied attentional processes (cognitive difficulties) in patients with (ME)CFS: “Our results provide objective evidence in support of the subjective report of cognitive difficulties in individuals with (ME)CFS and demonstrate an important role for functional neuroimaging in understanding the pathophysiology of (ME)CFS symptoms. The evidence supporting a central nervous system pathophysiological process for some individuals with (ME)CFS is mounting. Findings showed that individuals with (ME)CFS utilise more extensive (brain) regions. Individuals with (ME)CFS appear to have to exert greater effort to process auditory information as effectively as similar healthy adults. Our studies do not support the notion that difficulties in cognitive function in individuals with (ME)CFS are related to poor motivation” (NeuroImage 2005:26(2):513‐524). 2007 Further to their 2005 study, DB Cook et al from New Jersey Medical School used functional MRI (fMRI) to determine the association between feelings of mental fatigue and blood oxygen level dependent (BOLD) brain responses during a mentally fatiguing cognitive task in (ME)CFS patients. “Our results demonstrated significant associations between mental fatigue and brain activity during a fatiguing cognitive task (and are) generally consistent with prior research. Brain regions that were significantly related to mental fatigue included the parietal, cingulated, inferior frontal and superior temporal cortices, cerebellum and cerebellar vermis – regions that have been demonstrated as important for several aspects of cognitive function. Chronically fatigued participants exhibited greater brain activity in multiple brain regions during the fatiguing task compared to controls. The results suggest that the phenomenon of mental fatigue can exert demands on the neural processes necessary for efficient information processing” (NeuroImage 2007: doi:10.1016/j.neuroimage.2007.02.033). 2008 In this paper, Japanese researchers summarised neuroimaging findings in patients with (ME)CFS from 1992, including reduced brain blood flow, decreased brain volume and symptom‐related neuroimaging changes. They reported: “An increasing amount of neuroimaging evidence supports the hypothesis that (ME)CFS patients have structural or functional abnormalities within the brain. Available neuroimaging data not only show differences between fatigued patients and normal controls, but also indicate the brain’s response to mental fatigue and other complex symptoms of (ME)CFS. Evidence of abnormal perfusion has led to research on brain metabolism (that) found significant hypometabolism in the right mediofrontal cortex and brainstem in (ME)CFS patients. Patients with (ME)CFS have been found to have significantly abnormal brain volume compared with healthy controls and these abnormalities occur not only in white matter but also in grey matter. It is well known that cytokines produced in the brain exert various central actions, including activation of the sympathetic nervous system and HPA axis, impairment of learning memory etc; this points to the possibility that brain cytokines may play a role in the pathogenesis of (ME)CFS. We suggest that the focal point of (ME)CFS research should be transferred to the central nervous system” (J Int Med Res 2008:36:867‐874). Given the now‐substantial evidence of abnormalities in ME/CFS patients which have been demonstrated on neuroimaging, it is disturbing that the Wessely School apparently continues to dismiss them as of no consequence. Wessely’s colleague at the IoP, Anthony David, long ago went on record as being dismissive of neuroimaging in ME/CFS, asserting that the clinical significance of such testing “has yet to be determined” (Helen Cope, Anthony David et al; Br J. Psychiat 1995:167:86‐94) and that “It is premature …to claim unique
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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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Page 101 and 102: 101 their cortisol response, in tha
Page 103 and 104: 103 exposures. Responsibility for t
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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
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Page 123 and 124: 1995 123 “The use of cardiopulmon
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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
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Page 153 and 154: 2006 153 “(ME)CFS is a poorly def
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Page 157 and 158: 1990 157 “In order to characteris
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Page 165 and 166: 2003 165 “(ME)CFS is an increasin
Page 167 and 168: 167 Commenting on this paper, Dr Ne
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Page 171 and 172: 171 Documented abnormalities in the
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Page 185 and 186: 185 The presence of the LMW RNase L
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Page 193 and 194: 193 Moreover, recent research has s
Page 195 and 196: 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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