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

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194 (said) ‘Whatever causes CFS, it isn’t the virus itself’…Anthony Clare, psychiatrist and medical director of St Patrick’s Hospital in Dublin (now deceased), pointed out that…there have been many ‘fatigue’ diseases with shifting causes: ’Neurasthenia, food allergies, now viruses. Some people would always rather have a disease that might kill them than a syndrome they have to live with’ ” (Science 1990:249:4974:1240). In their PNAS article that was published in April 1991, De Freitas et al noted that chronic fatigue immune dysfunction syndrome (CFIDS) “may be related or identical to myalgic encephalomyelitis” and examined adult and paediatric CFIDS patients for evidence of human retroviruses (HTLV types I and II). As the CFIDS Chronicle article noted, the Wistar team looked at the peripheral blood DNA to see if they could find messenger RNA (mRNA) encoding for a viral segment of the HTLV‐II virus. At that time, known human retroviruses were the human immunodeficiency viruses 1 and 2 (HIV‐1 and HIV‐2) which are known to cause AIDS, and human T‐lymphotropic viruses HTLV‐I which causes lymphoma and HTLV‐II which causes leukaemia (Hunter‐Hopkins ME‐Letter, October 2009). The four segments of the HTLV‐II virus are referred to as the env, gag, pol and tax. After a two‐year study, De Freitas et al provided evidence for HTLV‐II‐like infection of blood cells from CFIDS patients (and also to a lesser extent from people closely associated with them). This evidence was further substantiated by patient reactivity to proteins with the molecular weights reported for HTLV‐I and HTLV‐II antigens. In their article, De Freitas et al said: “The frequency of these antibodies in CFIDS patients compared with healthy non‐contact controls suggests exposure / infection with an HTLV‐like agent rare in healthy non‐contact people”. Whilst none of the CFIDS patients’ blood samples contained detectable HTLV‐I gag sequences, DNA from at least two separate bleedings was positive for the HTLV‐II gag subregion in 83% of adult and 72% of paediatric CFIDS patients, and the authors pointed out that “similar frequencies of PBMCs (peripheral blood mononuclear cells) expressing retroviral mRNA have been reported for HIV‐infected individuals…The clinical histories of these CFIDS patients do not reveal behavioural or genetic factors usually associated with retroviral infection. Yet our data suggest that not only are these HTLV‐II‐like genes and HTLV‐reactive antibodies associated with CFIDS in patients but that samples from a significant proportion of their non‐sexual contacts are positive”. De Freitas et al were careful to emphasise that “Although our data support an association between an HTLV‐like agent and CFIDS, we cannot, as yet, define the agent’s role in the disease process. It may be a secondary infection to which immunologically compromised patients are susceptible. Alternatively, it may be one of two viruses that, when co‐infecting the same haematopoetic cells, induce immune dysfunction”. Following the Wistar findings, researchers at the US Centres for Disease Control (CDC) allegedly attempted to replicate De Freitas’ work but failed to do so; this was suggested to be because certain scientists appeared eager to discount any possibility of a retroviral association with CFIDS. De Freitas defended her work and insisted that the CDC investigators had modified her assays, with the result that her work could not be replicated by the CDC. It is known that attempts to replicate De Freitas’ work differed substantially from her own work in a number of ways, including the clinical definition of patients studied; uniform failure to use a “hot start” procedure with the PCR assay to maximise the efficiency of the PCR reaction, and the use of experimental conditions for the PCR assay that differed significantly from those used by De Freitas et al (Co‐Cure RES: 6 th March 2002). De Freitas was publicly discredited; her research funding was discontinued and her research abandoned; she was subjected to what appeared to be attempts to destroy her professional reputation. Commenting on the subsequent discovery of XMRV (see below), ME/CFS expert Dr Paul Cheney of The Cheney Clinic was unambiguous: “Her work was unfortunately assaulted by the CDC. Her proposal to fly to the CDC in Atlanta to physically run the assays side by side with the CDC scientists was dismissed by the CDC” (http://cheneyclinic.com/a‐retrovirus‐called‐xmrv‐is‐linked‐to‐cfs/538 ).
195 In August 1991, together with co‐author Brendan Hilliard, Elaine De Freitas applied for a world patent that was subsequently issued in April 1992. Detailed information has been provided by Dr Alan Cocchetto, Medical Director of The National CFIDS Association (http://www.ncf‐net.org/forum/revelations.html). Cocchetto is clear: “the contents of this paper have major implications due to the depth and scientific quality of the work…The entire patent is approximately 40 pages. If the NIH ignored the depth of this work… then the NIH dropped the ball on this one and should be held accountable. The inventors even state: ‘The ability to screen blood samples infected by CAV (CFIDS‐associated virus) enables producers and distributors of blood products, eg. the American Red Cross, to identify and discard donated blood…intended for use in transfusions…If unscreened, the use of such blood and blood‐derived products could contribute to the spread of CFIDS’. The inventors reveal: ‘Neither HTLV‐I, II, nor HIV virions have ever been found inside mitochondria…the positive results support the possibility that this CAV is capable of casual transmission to non‐infected persons’. If the NIH ignored this last comment, then something is dramatically wrong with the agency that is supposed to protect and safeguard the welfare of the citizens of the United States. Again, the implications here are just staggering…The only conclusion that can be reached is that this work is very thorough and extensive. It has been funded by the NIH….Any retrovirus that can invade the mitochondria directly indicates trouble. As far as I’m concerned, there needs to be a criminal investigation of the NIH regarding why they refused to fund upon submission of all this data”. It has been said that De Freitas’ reputation was intentionally destroyed because her research did not support the theory that (ME)CFS is a psychoneurosis, and that her public discrediting caused others to fear following up her work (Co‐Cure;NOT: 16 th October 2009). As Neenyah Ostrom commented: “CFS and AIDS do not exist primarily in a scientific environment: they exist, for the most part, in an extremely political environment” (New York Native, 28 th November 1994). There undoubtedly seems to be collaboration about policy concerning ME/CFS between the UK Wessely School and Dr William (Bill) Reeves, Principal Investigator of the CDC’s CFS research programme, who is held in the same disregard in the US as Professor Simon Wessely is held in the UK (see below). Regarding blood donation by people with ME/CFS, it is a matter of record that in reply to a letter dated 21 st December 1991 from the late Joan Irvine, on 16 th January 1992 Dr George Rutherford, Chief of the Infectious Diseases Branch of the US Department of Health and Human Services, replied to her query about blood donation by people with (ME)CFS: “…a number of researchers have postulated that it may be caused by an infectious agent or agents, such as a virus…Based on our knowledge of infectious diseases of the immune system, it is not impossible that one or more of these suggested agents might potentially be able to be transmitted through blood‐to‐blood contact, as occurs in blood transfusions…I think that it is best to await further research findings before resuming blood donation”. Also on 16 th January 1992, the same Dr William Reeves of the CDC wrote to Joan Irvine about the same issue: “…since on‐going research indicates an infectious agent may be involved in some cases of CFS it would seem prudent to refrain from donating blood until this issue is resolved” (http://www.cfs‐news.org/joan.htm ). As noted above, people in the UK with ME have been permanently excluded from donating blood since at least 1989 (Guidelines for the Blood Transfusion Service in the UK, 1989: 5.4; 5.42; 5.43; 5.44; 5.410). This was subsequently upheld by the Parliamentary Under Secretary of State The Lord Warner, who confirmed in writing on 11 th February 2004 in a letter to the Countess of Mar that people with ME/CFS are not permitted to be blood donors. Lord Warner was unambiguous: ʺWe have checked with the National Blood Service and they have provided the following information. The NBS guidelines on donor selection on ME refer to those on Post Viral Fatigue Syndrome. The Guidance is: defer from blood donation until recovery. The underlying logic
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MAGICAL MEDICINE: HOW TO MAKE A DIS
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Section 3: Consideration of the MRC
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5 MYALGIC ENCEPHALOMYELITIS/CHRONIC
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Introduction MAGICAL MEDICINE: HOW
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9 associations purely in order to
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11 “It’s not an illness that pe
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13 release that is not found in hea
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15 “The second clinical implicati
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17 In January 2003 the wife of Rich
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19 biomedical aspects of ME/CFS wer
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“Social factors 21 “Several of
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23 Despite the substantial evidence
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25 as possessed by devils or spirit
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27 However, as Crombez G et al poin
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29 Professor Anthony David’s resp
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31 From these beliefs of the PACE T
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33 warning about dependence being e
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35 This is unequivocal: according t
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37 Those studies, however, have bee
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39 The answer may be found in the f
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41 than giving actual numbers of pa
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43 deconditioning caused their illn
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45 Legitimate access has been obtai
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47 Goldstein’s search took a litt
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49 says about GET: “GET will be b
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51 The whole concept of “a CBT mo
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53 International concern about the
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55 The CISSD project was the brainc
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57 are changed in IBS lends credibi
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59 (http://www.entretiens‐du‐ca
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61 As Jonathan Rutherford, now Prof
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63 There are many who would profoun
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65 The term “CFS/ME” was carefu
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67 ill‐health and disability is d
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69 “The sick role does have advan
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71 Such is the influence of the Wes
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73 Editors of broadsheet newspapers
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75 Collins J who found that the UK
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77 The “Invitation to join the PA
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79 On 10 June 1988 Wessely provided
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81 “There is a record of a confid
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83 (6) Another, more recent illustr
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85 psychological hypotheses of caus
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87 Of particular note are the follo
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89 • “Two forms of treatment…
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91 patients with chronic fatigue st
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93 • Another UNUM policyholder, A
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95 “Over the twenty years I have
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97 a functional somatic syndrome),
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99 protein and serum amyloid A (whi
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101 their cortisol response, in tha
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103 exposures. Responsibility for t
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105 illness (and) these biases have
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107 diagnoses before (ME)CFS onset,
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109 He noted that: “The most extr
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111 According to Professor Nancy Kl
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113 95% have abnormal cognitive‐e
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115 In 2003 a UK study of skeletal
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117 “ME/CFS describes a disorder
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119 proposed for treatment‐resist
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121 page 381: “Arrhythmias are fr
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1995 123 “The use of cardiopulmon
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1999 125 “This study examined the
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127 cardiac output. This present st
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2005 129 On 10 th April 2005 Carol
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131 The next system to be compromis
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2005 133 Researchers at the US Cent
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135 In ME/CFS, these serious issues
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137 confirms reduced functional cap
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139 haemodynamics and an increased
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141 perhaps all, of the symptoms of
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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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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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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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