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THE ONE CLICK GROUP

THE ONE CLICK GROUP REPORT THE GIBSON ‘INQUIRY’
17 January 2007

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THE ONE CLICK GROUP REPORT THE GIBSON ‘INQUIRY’ 17 January 2007

Contents
1. INTRODUCTION 2. SUMMARY Key Statements Summary 3. WHO IS DR IAN GIBSON MP? 4. THE PHANTOM ‘INQUIRY’ PITCHES ITS CAROUSEL 4.1 Trust Me, I’m A Politician 4.2 All Change – The Group on Scientific Research Into ME 4.3 ‘Inquiry’ Terms of Reference 4.4 Secret Meeting 5. THE PHANTOM ‘INQUIRY’ UNFOLDS 5.1 GSRME Committee Members 6. THE ORAL HEARINGS 7. THE EVIDENCE 7.1 Lies, Damned Lies 8. REPORT CONSULTATION DENIED 9. NO NICE EVIDENCE 10. GIBSON REPORT LAUNCH 10.1 Gross Manipulation and Spin 10.2 The Gibson Tape – More Damned Lies 10.3 Kate Stewart/Margaret Williams – The Gibson Group Mouthpiece 10.4 Professor Malcolm Hooper 10.5 Hooper 'Inquiry' Spin 11. DEAL CUTTING? 12. THE MEDIA 13. GIBSON INQUIRY REPORT ANALYSIS 14. GIBSON REPORT POSITIVES 15. GIBSON REPORT NEGATIVES 15.1 ME In Children and Teenagers 15.2 The 'CFS/ME' Centres 15.3 Illness Severity - ME/CFS 15.4 Cognitive Behavioural Therapy/Graded Exercise Therapy (CBT/GET) 15.5 Psychiatric Colonising of Biomedical Research 15.6 The ME/CFS Criteria 15.7 The PACE and FINE Trials 15.8 Simon Wessely 15.9 Vaccinations 15.10 ME/CFS - The Wastepaper Basket Diagnosis 15.11 Lyme Disease/Borreliosis 16. CONCLUSION REFERENCES APPENDIX ONE Page 3 Page 4 Page 8 Page 11 Page Page Page Page Page 15 15 17 17 18

Page 18 Page 20 Page 26 Page 27 Page 30 Page 33 Page 33 Page Page Page Page Page Page 34 35 36 36 37 37

Page 38 Page 39 Page 41 Page 42 Page Page Page Page Page Page Page Page Page Page Page Page 45 45 48 49 50 51 51 52 54 55 55 56

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THE ONE CLICK GROUP REPORT THE GIBSON ‘INQUIRY’ 17 January 2007
"We have learnt from this government the hard way to be suspicious of official calls for a public inquiry. We should by now be even more suspicious, surely, of officialdom’s constant call for public debate, or worse still, in contemporary cant, for a “national conversation”. It is almost as bad as the official obsession with consultation. All have become weasel words meaning pretty much the opposite; the public is invited to have a say and get its feelings off its many chests and then the apparatchiks will carry on as before, but with a permanent “mandate” — that is, a permanent excuse for doing just what they wanted in the first place. Public consultation has become a way of protecting one’s rear end with a pretence of democracy. “But we consulted,” the cry goes up when there’s trouble." Minette Marrin, the Sunday Times, 20 November 2005. 1. INTRODUCTION On Tuesday 18 April 2006, The One Click Group presented evidence to the Gibson ‘inquiry’ named by its Chairman, Dr Ian Gibson MP, as the Group on Scientific Research into ME (GSRME). The full text of The One Click Group Presentation is available on the GSRME website at: http://www.erythos.com/gibsonenquiry/PresDocs.html. At Oral Hearing 1, The One Click Group put forward the biomedical case for ME/CFS labelled patients, precisely as you had requested. The One Click Group has consulted widely with its readers and participants (locally, regionally, nationally and internationally) over the Gibson ‘inquiry’ and the Gibson Report that has come out of this process. Our participants include patients (those who have the largest stake in this issue by far), their carers, the medical profession, health advocates, academics, politicians and the media et al. We work out in the field and on the internet. The material published by the One Click pressure group is read by the residents of over eighty countries worldwide and at peak, our website receives over 4,000 hits per day, every day of the week. The One Click Group has received an enormous amount of feedback as to the way that the GSRME ‘inquiry’ has been structured, its workings and the contents of the Gibson Report. Because of the many concerns expressed by you from the start to the finish of this process, we have been requested to set down in full and for the record what has transpired since that day on 28 July 2005 when this fullyfledged ‘inquiry’ concept was first mooted by Dr Ian Gibson MP, Labour member for Norwich North. In this document, One Click is acting as an Archivist over this ‘inquiry’. Although it would be an impossible task to include everything that has transpired over this issue for the last year or more since the nuances alone would make for a paper of doorstop proportions, what we have set down for you and on your behalf is the ‘inquiry’ events in chronological order, the evidence and analysis of the Gibson Report and its implications.

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We recognise how difficult it has been for patients in particular to work so hard and at such length in response to the Gibson Report during the Christmas period. This is particularly so because this occurred immediately hot on the heels of the Draft CFS/ME National Institute for Health and Clinical Excellence (NICE) Guidelines that required such a sterling effort from you all and that resulted in The One Click Group Response – CFS/ME Draft Nice Guidelines, 16 November 2006, now submitted as formal evidence to this body. We thank our participants for this high level of interaction over the Gibson ‘inquiry’ and report and hope that we have done justice to all the copious feedback received. 2. SUMMARY For over a decade or more, the ME/CFS community that consists of over 240,000 patients in the UK, 40,000 of them infants, children and young people, has been requesting an official, judicial investigation into their plight with a judge or QC at the helm whose findings would have the status, power and credibility to address their many concerns. We list the children locked away in psychiatric wards because of this misunderstood illness, their education and lives ruined with their Mothers frequently accused of Munchausen Syndrome by Proxy/Fabricated or Induced Illness (MSBP/FII) and the families torn apart and forever destroyed; the ME/CFS labelled patients suffering from a neurological illness forced to undergo the damaging psychosocial treatments of Cognitive Behavioural Therapy/Graded Exercise Therapy (CBT/GET) that at best do nothing to relieve and cure and at worst confine them to wheelchairs for many years; the jobs lost and the carefully crafted careers cut short; the Benefits on which patients need to survive denied as but a few examples of the many. For ME/CFS patients, that label is frequently a passport to penury, to misery and despair. The appalling litany of what has been done to ME/CFS labelled patients for the last twenty years or more sanctioned, bankrolled and endorsed by the United Kingdom government to the tune of millions upon millions of pounds sterling - represents a litany of Human Rights degradation. Despite the overwhelming evidence to the contrary, the psychiatric lobby proponents of the psychiatric paradigm on ME/CFS have continued to assert with no scientific backing of their findings, the notion that the illness is caused and/or perpetuated by ‘psychological’ or ‘behavioural’ factors. They consistently portray sufferers as mentally and socially deviant. They illogically and incorrectly describe ME/CFS as ‘Medically Unexplained’. Ironically, they then promote a state of ‘cultivated ignorance’ about the illness by discouraging all but the most limited of biomedical investigations/treatments for sufferers. Entirely and exclusively in support of the psychiatric lobby's endeavours, the UK government has to date wasted £11.1m of British taxpayer’s money on the psychiatric construct of ME/CFS with a further £180m to come, courtesy of the recommendations made by the National Institute for Health and Clinical Excellence (NICE). The UK government is also undertaking a programme of denying one million claimants their entitlements to Incapacity Benefits and have targeted ME/CFS labelled patients in particular to be at the sharp end whilst providing no biomedical relief for these patients to help them get well, instead forcing the CBT/GET treatments that survey after survey has illustrated do physical and sometimes irretrievable damage to patients suffering from a neurological illness.

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At that meeting between Dr Ian Gibson MP, Professor Malcolm Hooper and Kevin Short et al on the 28 July 2005, the ME/CFS community was given to understand by this Member of Parliament that at last, a full-ranging Inquiry that would address your concerns and the malfeasance carried out by the psychiatric lobby on the vulnerable and the sick, particularly the young, for the last twenty years or more would be properly addressed; that new ways of doing things would be considered. Instead and to extensively documented ME/CFS community disquiet, Dr Gibson’s previous undertaking “to get to the bottom of things” properly and thoroughly on behalf of ME/CFS labelled patients swiftly metamorphosed into the Group on Scientific Research into ME. Not a Select Committee or an inquiry commissioned by government, or any government department, Parliamentary body, office or agency, Dr Gibson’s Group had been deliberately structured by him to be unofficial thus lacking in any scientific or political credibility, rendering it disreputable from the start. From this damaged seed, much misery and unease was to grow. From the peers and MPs selected by Dr Gibson to sit on his ’inquiry’, to key Oral Hearings held to all intents and purposes in camera, to the most justified concerns in relation to the evidence, the issues that patients have raised throughout this ‘inquiry’ have been entirely legitimate, very serious and overwhelming in number. Coupled with the gross patient manipulation and spin that occurred upon publication of the Gibson Report orchestrated by its Chairman, to the in-part shattering contents of the report itself, the Gibson ‘inquiry’ has been classified by you as a secretive and incompetent imbroglio, distinguished by its lack of openness, honesty and transparency throughout. Because of the unofficial status of these proceedings, Dr Gibson and his Group are deliberately unaccountable to anyone or any legislative body. Any references to these proceedings as a ‘Parliamentary Inquiry’ or a ‘Parliamentary Report’ are incorrect. The Gibson Report is merely an unofficial opinion piece put forward by a group of politicians who are meticulous in their failure to indicate precisely on what evidence their findings have been based. The most basic and incontrovertible test of any political report produced on any given health issue is this: Would the patient and/or carer feel comfortable in giving a copy of it to their doctor. The answer to this question has been a resounding NO from you all right around the world, particularly from the parents of ME/CFS labelled children. The fact that a so-called health report cannot even meet this most basic criterion has been shattering to many who worked so hard to provide first class evidence for this ‘inquiry’ and who initially looked to place their trust in this politician. It is a great pity that the vast majority of the positives contained in the Gibson Report have been completely drowned out by the negative words equally contained therein on precisely the same issues, together with the lack of practical action propounded by the Group to help patients. The Gibson Report has been written in a very idiosyncratic style, which one would not expect from any ‘inquiry’ where clarity is of vital importance. Both Dr Ian Gibson himself in his communications around the report - for example in his article published in the Journal of Clinical Pathology entitled A New Look At CFS/ME, 25 August 2006 – and in the report itself uses emotive and inappropriately inflammatory language against patients, both individually and as organised advocates or groups, that has no place in a report ostensibly on

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scientific research into ME. Patients do NOT express negative personal feelings towards the proponents of the psychiatric paradigm. They critique the paradigm itself and the actions of its proponents. To claim otherwise is emotive and inflammatory. Even though the standard of the political report produced by Dr Gibson and his colleagues is appalling (the children) and scientifically and medically illiterate in parts, some allowances would have been made if the report had in any way initiated a new way of doing things, positive action undertaken, or if it would have publicly and definitively attempted to alter the psychosocial climate that surrounds ME/CFS. It has not done any of these things. The report produced by Dr Gibson and his Group reinforces the contention that ME/CFS is a psychological problem, irretrievably damages ME/CFS labelled children, entirely discards the evidence base of current and on-going infections in ME/CFS and totally supports the damaging ‘CFS/ME’ Centres run by the psychiatrists for psychiatric benefit that have been set up to provide patient fodder for the scientifically fraudulent PACE and FINE trials. The Gibson Group states that they accept the psychiatric lobby projects, papers and trials as valuable evidence. They also thoroughly endorse and support the ‘CFS/ME’ Centres roundly condemned by patient’s right around the nation. Providing the highest of accolades, Gibson et al promote them as beacons of excellence and “hope that they will be maintained and rolled out”. These psychiatric clinics are the absolute centrepiece and lynchpin of government and psychiatric policy on ME/CFS. To leave them standing without substantial criticism means acceptance of the entire government and psychiatric lobby psychosocial edifice on ME/CFS. One of the most worrying aspects of the Gibson Report is that it has specifically endorsed and recommended the psychiatric attempt to colonise biomedical research on ME/CFS by promoting the work of Simon Wessely’s spokesperson, Professor Trudie Chalder, who is claiming that Cognitive Behavioural Therapy (CBT) "has a biological effect on the body". This is the only specific and delineated area of research that the Gibson ‘inquiry’ recommends should be undertaken. Even though such mind-over-matter-think-yourself-ill-or-well claims are full of absurdities, they have now been given legitimacy by a ‘government’ 'inquiry' report. Worldwide bets are currently being laid on just how swiftly the Medical Research Council et al will be deploying funding for this particular Wessely new product. In stark contrast to the psychiatric evidence accepted by the Group and despite the very high class biomedical submissions and presentations made to the ‘inquiry’ by many of the experts in the field, the Group states that the psychological/physical debate remains confused and recommends that all the biomedical evidence needs to be confirmed or refuted by others; that another inquiry should take place to confirm or refute its validity. On this basis, the Group has actually done very little that is positive to encourage biomedical research into ME/CFS. Indeed, many have suggested that when the full meaning of the report has sunk in, it has done precisely the opposite as we will show. Gibson et al have failed to make clear that the majority of symptoms linked with ME/CFS are also present in many other very serious and often fatal conditions and that people demonstrating these symptoms are not being investigated. With ME/CFS as the archetypal wastepaper basket diagnosis and with all in-depth tests and investigations invariably denied, many patients suffering from viral and

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bacterial infections such Lyme Disease/Borreliosis that has symptoms indistinguishable from ME/CFS, will be left to suffer horribly and some of them will die. By the emerging evidence of chronic microbial infections being present in many people labelled with ME/CFS being ignored, patients diagnosed with ME/CFS and who have these infections are being placed at serious risk of being deprived treatment that might prevent the deterioration of their condition into serious illness, severe disability and on far too many occasions, death. ME/CFS misdiagnosis is being carried out on a massive scale in the UK and around the world because it is an easy box to tick and a simple label to append. Gibson and his colleagues were given the golden opportunity to recommend that all patients about to be labelled with the wastepaper basket diagnosis of ME/CFS should undergo viral and bacterial testing. Instead, the entire evidence-base of current and ongoing infections in ME/CFS has been discarded in this report. For the Gibson Report to fail to accurately and properly deal with the evidenced links between ME/CFS and Lyme Disease/Borreliosis - the fastest spreading zoonotic infection in the world today – and the research issues that so clearly need to be addressed in this area has been hailed by many as tantamount to criminal negligence. As an inevitable consequence of the Gibson Report and its appalling endorsement of the construct of Munchausen Syndrome by Proxy/Fabricated or Induced Illness (MSBP/FII) to which social workers will doubtless latch on with a high degree of glee, vulnerable babies and children will have their ME/CFS symptoms dismissed as MSBP/FII, some will be forcibly removed from their homes and their families subjected to the utterly secretive proceedings of the family courts. Their lives will be destroyed. The psychiatric lobby knows full well that the area in which they are weakest and most open to litigation is for the horrors that they have perpetrated on ME/CFS labelled children - minors with no voice. This is a Human Rights issue that Gibson and his colleagues have done their very best to bury with the report coming out of this 'inquiry'. It is clear that Gibson et al are trying to drag the ME issue into the corrupt world of medical research science, where it will again be joined by its dead bride Wesselyite psychological testing. This tactic is not of course useful for finding medical and scientific solutions for patients, but simply removes the debate over ME/CFS from the venue of politics, culture and patient rights to a cupboard labelled ‘Science’. Here in darkness the question of treatment can be mauled by the ghostly followers of the lobby groups like Sense About Science and the Science Media Centre. For Gibson to maintain that the voice of the patient has been heard and that he is acting as our spokesperson in the Gibson Report is quite possibly the most disgraceful and outrageous fallacy that has ever been witnessed by anyone anywhere in the world. Dr Ian Gibson MP has personally stated that the objective of his ‘inquiry’ was to open up a dialogue. If Gibson had absorbed one tenth of the evidence submitted, he would have recognised that ME/CFS patients have been drowning in endless “dialogue” and little else in relation to the biomedical basis of ME/CFS for the last twenty years or more. This has occurred whilst the UK government exclusively financially bankrolls and endorses the work of the psychiatric lobby to the current tune of £11.1m with a further £180m earmarked for this endeavour by NICE.

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The Gibson ‘inquiry’ and its report appear to have been designed to deliberately create meaningless white noise, to attempt to pacify the ME/CFS community for the time being and keep them quiet by passing the buck to another bureaucracy quagmire, whilst maintaining the psychiatric lobby multi-million pound sterling steamroller firmly in business. Investigative writer Martin J Walker, known around the world for his excellent writings medical spin that has surrounded this much twenty years or more writes on the conclusion to health advocates and patients on ME/CFS and the political and misunderstood illness for the last of this ‘inquiry’:

"All Gibson has done is just to push the pea slightly further uphill with his nose. Nothing practical has come out of this Report that is on our side and is any good to us. One needs to see these things *solely* in terms of positive action. If the report is published, it doesn't matter if it's woolly, taut or whatever. If this report actually says, "We have approached the Department of Health, Chancellor of the Exchequer etc., to seek a substantial amount of money to put into biomedical research on ME/CFS," then OK. And if Gibson et al have actually done that and the letters are there in the Appendix ... But if they say "Well, we've got to put more money into biomedical research", it's not worth the paper that it's been printed on." The words in the Gibson Report bear some similarities to the Chief Medical Officer’s Working Group Report published in 2002 that reflect the usual curate’s egg situation - good in parts and bad in others. However, it is the flaws in the Gibson Report that form the most potential dangers to the ME/CFS community. People’s safety is at stake and we are faced with possible risks to that safety caused by government intervention, a valid concern of advocates since the beginning of this ‘inquiry’. We quote from the paper entitled ‘How To Solve A Problem Like ME/CFS: Why The Gibson Report Has Failed Patients’ by Lara, 9 December 2006 (Appendix 1): "One can now only hope that the Gibson report has not done more harm than good and that future research will include testing for bacterial and viral infections in ME/CFS patients, a good part of which could be achieved using the £180 million earmarked for CBT/GET therapies. One thing is certain, in any judicial review going forward, a vigorous campaign for testing of infectious diseases must be kept up. Patients simply do not have another decade of their lives to give up to tail-chasing, closed-minded and flawed research and treatment approaches in ME/CFS." In this document, One Click deals with the history and structure of this ‘inquiry’, what happened to the evidence submitted, the political and medical manipulation of patients that occurred immediately upon publication of the Gibson Report and the contents of the report itself, both positive and negative. Key Statements Summary * Stellar investigative writer Martin J. Walker comments: “The fact that the ‘Independent Inquiry’ into the skewing of government policy on ME towards the psychiatric lobby, which Gibson promised, turns out to be neither an ‘Inquiry’ nor ‘Independent’, is par for the course.”

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* During the structure stage of Gibson's 'inquiry', it became abundantly clear that this was to be no judicial and impartial investigation of any kind headed by a Judge or QC. Instead, it was announced that Dr Gibson had self-selected himself as Chairman of the ‘inquiry’. It was further announced that the ‘inquiry’ was to be based in the offices of one Tony Wright MP whose bias towards the psychosocial during his tenure as Chairman of the All Party Parliamentary Group on ME (APPG) and his refusal to allow biomedical evidence to be presented had engendered formal complaints towards the Parliamentary Standards Commissioner, Sir Phillip Mawer. Charges of bias and flagrant unethical abuse of due process had been levied. The first Administrator appointed to handle the ‘inquiry’ at this key set-up stage to deal with the evidence was to be Mr. Wright’s researcher, his right hand man. Any pretence of independence and objectivity claimed by this ‘inquiry’ departed forthwith. * When the previously discussed Terms of Reference of this 'inquiry' on which its investigations were to be based were completely and arbitrarily altered by Dr Ian Gibson MP so that fundamental ME/CFS concerns were not to be addressed, Professor Malcolm Hooper levied charges at Ian Gibson that the TORs cut-off point had provoked outrage and a sell-out to the establishment. This is indeed what took place. * The structure of Gibson’s ‘inquiry’ became a matter of serious concern from the outset. Despite the intervention of another MP and a national newspaper journalist attempting to garner this most legitimate information in relation to the ‘inquiry’s’ structure, it took the threat of a demonstration outside the House of Commons to persuade Gibson to part with the information required. The administrative chaos and lack of openness and transparency that has been the watchword of Gibson’s 'inquiry' was evident from the earliest stage. * With two of the Oral Hearings held to all intents and purposes in camera and Minutes of the crucial psychiatric lobby presentations never placed in the public domain together with selected Gibson Group committee members failing to turn up at the Hearings, the Gibson 'inquiry' began to resemble the worst workings of an unaccountable Banana Republic, leading to intense patient disquiet and dismay. * Amidst bullying abuse and threats of litigation, Dr Ian Gibson MP finally admitted that there had been no Evidence List produced for the 'inquiry', that the evidence had not been distributed by a central process to members of the committee and that swathes of the evidence had only been seen by “at least one member of the Group”. Committee members had often failed to attend the Oral Hearings, selected Presentations were never published on the 'inquiry's' website, Minutes of selected and crucial Presentations were never published and Dr Gibson failed to tape record all the Presentations. Dr Ian Gibson MP lied on tape over the evidence issue. It is entirely mysterious as to who has seen which pieces of evidence, if any at all. How can one trust the findings of this report if one does not know what evidence was used on which it based its findings? * Gibson had previously stated categorically and in public that the report coming out of this 'inquiry' would be subject to consultation from the ME/CFS community prior to publication. This never took place. When the report was finally published with crashing errors and positively dangerous flaws inherent, Gibson announced: “The Gibson Inquiry is not out for consultation/amendment. The aim of the report is to reflect the opinions of the Group after spending a year receiving and reviewing evidence.” How the evidence was reviewed if at all in any meaningful way, is a massive bone of contention.

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* The Gibson Report was submitted to the National Institute for Health and Clinical Excellence in the knowledge that NICE would receive this report on a ‘for information purposes only’ basis. This means that NICE does not have to comment on the contents of the Gibson Report or respond to the Gibson Group; NICE can ignore the contents of this document if it chooses to do so entirely. In doing so, the Gibson Group were fully aware of the implications of their actions. From the disreputable unofficial status of the ‘inquiry’ that has given it no scientific credibility, to the refusal to submit the report as evidence to NICE, the Dr Gibson et al tactics throughout this exercise have been entirely disreputable. * In order to grossly and unethically manipulate patient response to the report, Dr Gibson purposefully advance seeded copies of it days before publication so that badly skewed 'digests' and 'summaries' of the report would be released from previously trusted ME/CFS advocates simultaneously to report publication. These 'previewers' had deliberately capitalised upon their status with the Gibson Inquiry Group in order to spin the content and status of the Gibson Report as well as to make claims about the report’s prospective ability to change the fortunes of the ME/CFS community at the highest level. In doing so they intended to steer opinion in favour of the positive aspects of the Gibson ‘inquiry’ project, by selecting only those issues within the report that suited their purpose and ignoring all other aspects of the report’s contents, the status of the ‘inquiry’ and the problematic history of the ‘inquiry’ project to date. As a result of this deliberate, gross and outrageous patient manipulation carried out by these people, Dr Gibson obtained report thanks under politically manipulated false pretences. Dr Gibson subsequently denied advance seeding copies of the report and lied in relation to this issue on tape. * Many have surmised that a deal was cut behind the ‘inquiry’ scenes, whereby a legitimate research grant would be gained by one of the ME Charities in return for a more favourable receipt of the report by some key individuals. * Despite promising to "hit the airwaves" with the Gibson Report and a Press Conference, the undertaking of media relations so vitally necessary to alter public opinion, to encourage biomedical researchers to enter the field, to help patients be treated seriously by their doctors and to assist with the obtaining of the Benefits which so many patients need in order to be able to survive, failed to be arranged by Gibson. * The calls for biomedical research in the Gibson Report are to be much welcomed. However, the fact that these are backed by absolutely no positive and meaningful action of any kind save for the calling of yet a further inquiry to review the biomedical evidence means that they are not worth the paper that they have been printed on. It is clear that Gibson et al are trying to drag the ME issue into the corrupt world of medical research science, where it will again be joined by its dead bride Wesselyite psychological testing. For those who would like to skip reading information and evidence on the set up of the ‘inquiry’ and its proceedings in this document and would like to jump immediately to the Gibson Report critique, please go to page 41, Section 13, GIBSON INQUIRY REPORT ANALYSIS.

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3. WHO IS DR IAN GIBSON MP? "He is simply a shiver looking for a spine to run up." Paul Keating, highly amusing arch insultist, Australian Prime Minister 1991 – 1996. We deem it appropriate at this juncture to explore and examine an extremely relevant section of the health background of the politician who set up this ‘CFS/ME’ ‘inquiry’ as this informs the outcome of what has occurred with the Group for Scientific Research into ME (GSRME) created by him. It has become clear that Dr Ian Gibson does not appear to have much time for ME/CFS labelled patients, unless this propinquity involves public display. Referring contemptuously to patients and health advocates behind the scenes as “you lot” during the workings of his ‘inquiry,’ Dr Ian Gibson MP has shown himself to be insulting, abusive, mendacious and litigious, amongst his other characteristics. The lack of charm offensive in this politician would not have mattered if he had done his job with any kind of scientific rigour. In a paper penned by Gibson in the Journal of Clinical Pathology entitled A New Look At CFS/ME, 25 August 2006, he states: "...to curtail attempts of some to suppress what they hear and what they see written down and to keep their vitriolic actions and comments at bay." It is clear that Dr Gibson has allowed personal prejudice to inform the way he has constructed the very people he claims to want to consult. In the circumstances, it is ironic that the Gibson Report claims “our task is to highlight the ongoing struggle of the CFS/ME community and to ensure that the voice of the patient is heard." By constructing patients or their representatives as ‘vitriolic’ and unreasonable before the Gibson Report was even published is to further alienate the community from enfranchisement. It is astounding to find such emotive and inflammatory language in an ‘inquiry’ document. The frequent categorisation of patients as angry and hostile is a highly unfortunate feature of Gibson’s report. It has already been found that this tendency to describe patients thus is rife (E. Marshall, Kate Stewart (Margaret Williams) 1996, 1999). It is therefore highly demoralising to see a similar construction of patients within the Gibson Report. With evidenced and dedicated connections to the sinister government spin lobbying organisations, Dr Ian Gibson MP, Labour member for Norwich North, recently enjoyed extensive national media coverage in relation to his links with Roche Pharmaceutical, the largest purveyor of cancer drugs and the Cancer United campaign. Elected Member of Parliament Dr Gibson told the Channel 4 News Report that he had been conned and had no idea that this campaign was being bankrolled by the pharmaceutical giant. Disingenuous from beginning to end, it is quite clear that if true, the perspicacity and good judgement of this particular MP at the very least leaves a great deal to be desired. Others have commented at length on even more interesting aspects of this scenario. The One Click Campaign participants have requested us to illustrate in full for the record, the background of Dr Ian Gibson MP and this we now do. There is no better way to exemplify this issue than to use the writings on this subject penned so articulately by investigative writer Martin J. Walker. With diligent, in-depth research as his hallmark, Walker has written extensively and entirely accurately on the corruption, spin and manipulation that has surrounded the much misunderstood illness of ME/CFS for the last twenty years or more in his various books and publications on the subject including Skewed, Realpolitik and ME, and Brave New World of Zero Risk: Covert Strategy in British Science Policy. By understanding Gibson’s background, you will understand his work. Reading

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Walker’s material published shortly after the ‘inquiry’ was announced is analogous to being visited by Cassandra’s Curse, now that the ‘inquiry’ is completed. Extract from Realpolitik and ME by Martin J. Walker 8 November 2005 “The ‘Independent’ Inquiry The fourth strand of the [psychiatric lobby] strategy, which has emerged over the last six months, has exhibited itself in Dr Ian Gibson MP’s ‘Independent Inquiry’, which was set up to examine other than psychiatric causes of ME. The emergence of the ‘Independent‘ Inquiry manifests one of the greatest differences between the two lobbies involved in this ongoing battle being fought over ME sufferers. The philosophy of those who are asking for serious scientific biological research into the causes of ME can be reported simply and without embellishment. For twenty years now, they have wanted no more than any other patient group in Britain: to raise the issue of, and the funding for scientific research into the cause and treatment of their condition. With respect to those who maintain that ME is first and foremost a psychiatric condition, their philosophy, its campaign and their strategies have been anything but straightforward. Baroque in its intrigue, infinite in its dissembling, practised like a card sharp in deceit, it has resembled nothing less than a psychological operation constructed by the CIA or some other secret policing instrument. The campaign has buried itself inside medical research like an engorged maggot; at every turn, new money comes to hand, more mercenary researchers rush to its aid. With each turn of the ratchet in its offensive, new sponsors from the corporate world emerge, new velvet gloves hiding iron fists, new words of reconciliation which conceal venom and forked tongues. Because the patient community is unable to adopt a cohesive political line, they get duped every time the psychiatric lobby hides its stick behind a large carrot. In the case of the phantom ‘Independent’ Inquiry, Dr Ian Gibson New Labour MP for Norwich North, approached Kevin Short and Professor Malcolm Hooper. After a discussion Gibson went to the nearest phone box and having changed into his familiar red and blue suit, flew out exclaiming; ‘It’s about time something was done, I will set up an Independent Inquiry’. Within days of Gibson’s offer, Short was energetically digging another hole for ME groups to bury themselves in. Neither Kevin Short nor Professor Hooper, or for that matter a number of others who quickly tendered evidence to what has turned out to be an entirely bogus offer, seem to have given Gibson’s offer a moment’s political reflection. It was as if the words ‘Independent Inquiry’ mesmerised the listeners and they immediately suspended their political judgement. ‘I’m an MP’, said Gibson, ‘trust me’. Had either Professor Hooper or Kevin Short reflected for a moment on Gibson and his offer, they would have found cause to be concerned. Before he became an MP, in 1997, Gibson was Dean of the School of Biological Sciences at the University of East Anglia (UEA). East Anglia

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was the base, until the mid nineties, of Fisons, the agricultural chemical company. Funding from the company helped shape research at the UEA, more so when Fisons was bought up by Rhone-Poulenc in 1996. In 1999, Rhone-Poulenc joined with Hoeschst Marion Roussel to form Aventis. UEA has had a funding input from all these companies and, in 2003, it was in the top twelve Universities receiving funds from the BBSRC, the bio-tech quango which dispenses massive funding – some of it from the coffers of the Sainsbury family. Gibson himself has declared funding received from Rhone-Poulenc for taking part in scientific meetings. Up until last year, Gibson was the Chair of the All Party Science and Technology Committee (APSTC), the watchdog committee which oversees science policy in the Commons for the Science Ministry which is situated within the Department of Trade and Industry (Dti). The APSTC is funded in part by Astra Zeneca, the Dti and bioscience companies. Together with Dr Des Turner, [current Chairman of the All Party Parliamentary Group on ME] Tony Wright [previous Chairman of the All Party Parliamentary Group on ME] and Dr Richard Taylor – also a member of the Associate Parliamentary Group on Health, set up by the pharmaceutical lobby group Networking for Industry – Gibson is a member of the All Party Group on Cancer, which is heavily funded by all the leading Big Pharma names, including Novartis, Pfizer Lilly and Merk. He is also a member of the All Party Group on Pesticides and Organophosphates, which, until they became more focussed on bioengineering, were staple product of Fisons and Rhone-Poulenc. Gibson is a leading member of the British Association for the Advancement of Science, now called simply the BA, which in the early nineties played a considerable role in promoting the ‘quackbusting’ Campaign Against Health Fraud. Gibson sits on the editorial committee of the BA’s magazine, Science and Public Affairs, the magazine is again a public arbiter of government science policy and Gibson shares his editorial role with personnel from the Royal Society of Spin, The Financial Times, the Parliamentary Office of Science and Technology (POST) – the science policy-making centre of government, and the Wellcome Trust. Involvement in the higher echelons of corporate science and government has brought Gibson into contact with the new generation of science lobby groups. Sense About Science – funded by the ABPI and various chemical and pharmaceutical interests; The Institute of Ideas – funded by Pfizer and the Science Media Centre, also funded by the ABPI and a variety of powerful corporations. These lobby groups work in partnership with New Labour, POST and the Dti. Although they profess a focus on science, these groups, are actually involved in corporate PR and spin. They are linked in North America to right-wing libertarian groups heavily involved in ‘quackbusting’, campaigning rabidly against alternative medicine, environmentalists and patient advocacy groups. In Britain, they have been involved, in partnership with the Royal Society and the Royal Institution, in pushing corporate interests in Genetically Modified crops and pharmaceuticals. In 2004, Science in Society, the magazine of the Institute of Science in Society, one of the most independent and

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radical science campaigning groups, informed its readers of the collusion between Professor Derek Burke a leading member of Sense About Science, and Dr Ian Gibson, in defending GM crops on the grounds that they were perfectly safe for human health. This interest in corporate science is, of course, quite natural for a man who has been an academic scientist prior to entering the Commons. For ME sufferers, however, Gibson’s involvement with the various groups above must sound alarm bells. As I explained in Brave New World of Zero Risk, the lobby groups which are presently spinning news on behalf of corporate interests and New Labour are the joined up version of the quackbuster group HealthWatch (in fact, members and ex - members of HealthWatch actually write unattributed copy for members of these lobby groups). One of the prominent founding members of HealthWatch was Simon now Professor - Wessely. Wessely is now a senior member of the Science Advisory Panel for the Science and Media Centre, a member of the US American Council on Science and Health advisory panel, a leading member of the R,RSA, an obscure group inside the Health Protection Agency, set up to spin all public health threats, and he is still deeply involved in the corporate manipulation of ME information. Yet another prominent member of this new generation of Lobby organisations is Michael Fitzpatrick, an East London GP who has written in purple prose about false beliefs held by people who claim that they have the physical symptoms of ME. The fact that the ‘Independent Inquiry’ into the skewing of government policy on ME towards the psychiatric lobby, which Gibson promised, turns out to be neither an ‘Inquiry’ nor ‘Independent’, is par for the course. Before even the composition or the personnel of the Inquiry had been announced, the Independent Inquiry suddenly metamorphosed into a ‘Scientific Group on ME’ situated in the offices of Tony Wright MP, the last Chair of the Parliamentary group on ME. So, after twenty years of getting by on a wing and a prayer, without the slightest evidence to support their bizarre belief that ME is a psychiatric condition, the psychiatric lobby has wised up. How much better it would be for the psychiatric lobby to colonise the area of physical scientific research into ME. Of course, there is a vast difference between gathering information about scientific research into ME – little of which has been done for obvious reasons – and supporting this same research. We have a good example of how the corporate science lobby groups deal with scientific research in the position that Dr Fitzpatrick and others have taken on Dr Andrew Wakefield’s research. There is only one genuinely scientific resolution to an argument within scientific research, that is, to independently replicate research and compare results. Instead of doing this, the ‘science lobby’, supported by government and pharmaceutical companies, used research reviews like the recent Cochrane Review, which compared studies focussed either on MMR or Autism, to discredit Wakefield. Inevitably, there has been precious little physical scientific investigation into ME, in Britain. The reason for this is obvious; all the money and the power is held by the psychiatric lobby the posturing of

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which, over ME suits the government and the corporations. Once again, with the declaration of an ‘Independent’ Inquiry, the ME community has been thrown into confusion by a honeymoon offer from their detractors. The singular lack of political analysis amongst some of the most prominent figures in the ME community, has yet again led these long-suffering individuals down another blind alley. The conflict between the psychiatric lobby and those who believe that ME has a physical aetiology is now intractably dominated by vested interests. The PRIME Project, the ‘Independent’ Inquiry and the network of clinics set up by the NHS, under the guidance of Professor Pinching, all constitute major advances by the psychiatric lobby. Unfortunately, after twenty years of denigration, many ME sufferers and their carers are still avoiding crucial political questions and failing to work autonomously towards what should be their two main objectives. The first, a political objective has to be the organisation of a far reaching independent and judicial investigation into the psychiatric lobby and, the second, more practical objective, the establishment of an ‘independent’ national research fund, which will be used to establish and conduct research entirely into the physical causes of ME by medical researchers unaligned to either corporate or psychiatric interests. There comes a time in all political struggles when accepting the hand of friendship from a suspected or traditional enemy, or even entering into a dialogue with them is simply to commit Hara Kiri, in public without the honour. Until the ME ‘community’ has built a solid and cohesive movement opposed to the psychiatric and corporate lobbies, until they begin to close in on either of the two objectives above, it would appear wise for them to adopt the ‘precautionary principle’ and maintain a moratorium on listening to or consorting with anyone who comes bearing gifts or ‘Independent’ Inquiries.” Martin J. Walker 8 November 2005 Key Statement: Stellar investigative writer Martin J. Walker comments: “The fact that the ‘Independent Inquiry’ into the skewing of government policy on ME towards the psychiatric lobby, which Gibson promised, turns out to be neither an ‘Inquiry’ nor ‘Independent’, is par for the course.” 4. THE PHANTOM ‘INQUIRY’ PITCHES ITS CAROUSEL How did the ‘Gibson inquiry’ come about? 4.1 Trust Me, I’m A Politician

“In the contemporary world of spin, illusion and the copious use of smoke and mirrors, you can determine who your first enemy is almost entirely by their actions, but discern next to nothing from their words.” Martin J. Walker, Those Who
Talk of Victory Have Often Already Been Defeated And Other Slogans For Toothless Parliamentarians. On the 28 July 2005, a meeting was arranged between Dr Ian Gibson MP, Professor Malcolm Hooper and Kevin Short, amongst others. Although Gibson is

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not Kevin Short's Member of Parliament, the arranging of this meeting came about down to the corrosive bond between these two men as previous members of the Socialist Workers Party. Four days later and with no apparent consultation, Kevin Short issued a Press Release that he despatched to the local Norfolk media on 1 August 2005. Picked up by the Norwich Evening News on 3 August 2005 in an article entitled ME is more than yuppie flu, man claims, the first serious alarm bells in relation to Gibson’s intentions towards the ME/CFS community began to sonorously toll. He was publicly quoted as saying: “Some say it [ME/CFS] is psychiatric and others say it is physical but it could be a bit of both.” From a man who had announced that he wanted “to get to the bottom of things” and that he had patients’ best interests at heart, to prejudicially announce in the media that “it could be a bit of both” before one shred of evidence had been submitted did not bode well. Worse was to come. A day later, Short and Gibson arranged an interview for Radio Norfolk during which Gibson announced on air that he had invited Tony Wright MP to join his inquiry committee and that this particular deed on his part guaranteed his inquiry’s full independence. This statement left ME/CFS watchers literally incredulous. Tony Wright MP, previous Chairman of the All Party Parliamentary Group on ME (APPG), had spent the entire length of his tenure as APPG Chairman promoting the psychiatric paradigm on ME/CFS. Heavily inculcated with psychiatric dogma, Wright had stoutly refused to allow any group associated with the biomedical basis of ME/CFS to give evidence to the APPG. All presentation of the biomedical evidence on ME/CFS had been blocked by parliamentarians, in close association with the ME/CFS charities such as Action for ME (AfME) and the Myalgic ‘Encephalopathy Association (MEA), for years. This manipulative corruption of due process had been so flagrantly unethical that complaints over Wright’s conduct had been laid before the Parliamentary Standards Commissioner, Sir Philip Mawer. Despite all this, Tony Wright MP’s office is where Dr Ian Gibson MP elected to site his ‘inquiry’. Kevin Short, politically naïve with Gibson running rings around him at every turn, was still forlornly maintaining that this ‘inquiry’ must be headed by a Judge or a QC in order for it to be truly independent. Short was right over this issue, but as the facts of the matter illustrated, Gibson had other plans. In October 2005, Gibson started to gather together his committee members for this ‘inquiry’. With absolutely no Judge or QC at the helm and no judicial investigation on the cards, Gibson then elected to announce that he had personally invited Dr Des Tuner MP, the new Chairman of the APPG on ME, to become a member of his Group. As Gibson knew, Turner had been involved with the psychiatric bias of the APPG for some eight years and is a Patron of Colin Barton’s Kent & Sussex ME/CFS Society that had adopted the psychiatric paradigm on ME/CFS to such a degree that it was Barton and his then colleague Joe Marsh that arranged and orchestrated psychiatrist Peter White’s propaganda tour around the United Kingdom for the scientifically fraudulent PACE and FINE psychiatric clinical trials. To absolutely ensure that the ME/CFS community would be under no illusions that what Gibson was up to would be perceived as an independent ‘inquiry’, it was then announced that the man appointed to be in charge of the ‘inquiry’s’

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administration would be Ian Woodcroft, the psychiatrically biased ex APPG Chairman’s researcher. The independence of Gibson’s ‘inquiry’ had been deliberately and radically compromised by the self-selected and self-appointed Chairman himself. Key Statement: During the structure stage of Gibson's 'inquiry', it became abundantly clear that this was to be no judicial and impartial investigation of any kind headed by a Judge or QC. Instead, it was announced that Dr Gibson had self-selected himself as Chairman of the ‘inquiry’. It was further announced that the ‘inquiry’ was to be based in the offices of one Tony Wright MP whose bias towards the psychosocial during his tenure as Chairman of the All Party Parliamentary Group on ME (APPG) and his refusal to allow biomedical evidence to be presented had engendered formal complaints towards the Parliamentary Standards Commissioner, Sir Philip Mawer. Charges of bias and flagrant unethical abuse of due process had been levied. The first Administrator appointed to handle the ‘inquiry’ at this key set-up stage to deal with the evidence was to be Mr. Wright’s researcher, his right hand man. Any pretence of independence and objectivity claimed by this ‘inquiry’ departed forthwith. 4.2 All Change – The Group on Scientific Research Into ME On I December 2005, ‘inquiry’ Administrator Ian Woodcroft sent out a bogus ‘press release’ – bogus because it never arrived at any News Desk in the United Kingdom that anyone can detect. This was delivered to the highly flawed and in many instances disreputable ME/CFS charities alone in order to attempt to garner their support. In this ‘press release’, the full panoply of what Gibson had doubtless intended from the start was revealed. Far from “getting to the bottom of things” as Gibson had asserted in his meeting with Short and Hooper on the 28 July 2005, Gibson’s offering metamorphosed into a Group on Scientific Research into ME. This was furthest thing from a far reaching independent and judicial investigation as it possible to get. first had the was

Failing to deal with any of the political and highly prejudicial medical aspects of ME/CFS that had so blighted the lives of over 240,000 ME/CFS labelled patients in the UK, Gibson stated: “The Group on Scientific Research into M.E. has been established to assess the progress of scientific research on M.E., since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002.” All that had been previously discussed was purposefully and deliberately cast aside. 4.3 ‘Inquiry’ Terms of Reference Any Group such as Gibson’s is based upon its Terms of Reference that delineate the issues to be considered. From those initial meetings with Gibson, the Terms of Reference for the ‘inquiry’ had been dramatically changed without any kind of consultation. Professor Malcolm Hooper was so incensed by Gibson’s double dealings that he wrote in his letter to Gibson on the 3 December 2005 in relation to the ‘inquiry’s’ Terms of Reference: “It was, therefore, a big surprise to receive an e-mail of the Press Release which includes the TORs [Terms of Reference]. These are not in agreement with our first discussions and have set limits on the

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Inquiry that greatly distress and alarm the ME community. There is no mention of some of the fundamental issues we discussed. I am aware that the proposed TORs circulating on the Internet make reference to “research progress since the CMO’s Working Group in 2002”. This is far too prescriptive since the CMO’s WG [Chief Medical Officer’s Working Group] and the MRC [Medical Research Council] which lies behind it are both part of the many problems currently experienced by the ME community. Both the CMO’s WG and the MRC have ignored reams of evidence that was submitted to them previously and their reports and advice represent a huge degree of ignorance about the illness that some see as deliberate and partisan. To use such a cut-off point has already provoked outrage and charge of a sell out to the establishment which I would want to avoid.” From that moment on the lies, political spin, patient manipulation and sell out that have been Gibson’s trademark throughout his dealings with ME/CFS were set in infected cement. 4.4 Secret Meeting To what degree Gibson had let people down is clearly illustrated by the tape recording made of the secret meeting arranged by Kevin Short between himself, Gibson, Jeff Brown and Barbara Robinson that took place on 4 November 2005, prior to the despatch of Gibson’s bogus ‘press release’ on 1 December 2005 announcing the Terms of Reference of his Group on Scientific Research into ME. Short was so incensed by Gibson’s December announcement at the way in which his Group was to be structured and its completely altered Terms of Reference that he wrote and published a letter to Gibson on 31 December 2005 outlining his dismay. Short quoted tape recorded points raised at that meeting verbatim in his letter to Gibson: [K Short]: "... but can I just clarify something; you are open to try to find a QC or a Judge?" [Ian Gibson]: "Oh absolutely, absolutely." This was not to come to pass by design. On 5 December 2005, ‘inquiry’ architect Kevin Short announced his decision to boycott Gibson’s phantom ‘inquiry’ in disgust. Ten days later and on the 15 December, Short had changed his mind. Key Statement: When the previously discussed Terms of Reference of this 'inquiry' on which its investigations were to be based were completely and arbitrarily altered by Dr Ian Gibson MP so that fundamental ME/CFS concerns were not to be addressed, Professor Malcolm Hooper levied charges at Ian Gibson that the TORs cut-off point had provoked outrage and a sell-out to the establishment. This is indeed what took place. 5. THE PHANTOM ‘INQUIRY’ UNFOLDS Watching this process unfold had been a difficult spectacle for many ME/CFS patients, their carers, families and friends. Rumours had swirled around the subject of Gibson’s Group since that fateful meeting in July 2005. Many readers and participants in the One Click Campaign had written to us extensively in relation to this subject, but until Gibson issued that bogus press release on 1 December 2005, very few confirmed and concrete facts of the shape of things to come were freely available in the public domain.

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On the 4th December 2005, health advocate Angela Kennedy wrote to Dr Richard Taylor MP, a purported member of the Gibson Group and asked pertinent questions in relation to the Terms of Reference and structure of Gibson’s Group. One Click Angela Kennedy's letter to Richard Taylor. On the 9th December 2005, Jane Bryant wrote to Gibson, submitted the One Click evidence to Gibson's Group, requested a receipt and asked for a response to precisely the same questions posed by Kennedy. One Click the Submission to the Gibson Group. Dr Gibson was refusing to announce the names of the committee members that comprised his Group in full, whilst simultaneously suggesting a time frame of less than twenty days in which very sick ME/CFS patients were supposed to produce evidence to be submitted to his anonymous ‘inquiry’. This was a serious challenge for the healthy, let alone the sick. Despite request, no receipt was provided for the information that One Click submitted to Gibson and the questions went unanswered. We wrote again to Gibson on 9 January 2006 asking for a receipt for the evidence that we had provided, together with answers to the questions. With no reply and not even an acknowledgement of correspondence received forthcoming, we eventually employed the good offices of one of Dr Gibson’s parliamentary colleagues, another MP, and a national newspaper journalist to get Gibson to answer these most legitimate and crucial questions. All these most polite enquiries fell on the arid and stony ground of indifference. Eventually and on the 3 March 2006, we wrote to Gibson again: “For three months your office has been unable or unwilling to provide the most basic of information required by ME/CFS patients. Correspondence goes unanswered and many requests for a response from you by an elected MP are ignored. We are at a loss as to understand why this lack of correspondence acknowledgement is continuing and indeed, several of our members have asked if it will be necessary to sit outside the House of Commons for a protracted length of time waving banners to obtain the most legitimate information required from our elected representatives? Failure to give any acknowledgement of any correspondence for three months and many requests made by an MP being ignored are unacceptable.” The threat of a demonstration outside the House of Commons where approaches by another MP and a national newspaper journalist had failed, finally galvanised Gibson into response. On the 8 March 2006, Gibson finally answered the questions. Crucially, in this letter and in relation to the evidence, Gibson stated: “We have now recorded and prepared for distribution all written evidence submissions amongst the group's membership.” You will see in the Evidence Section of this document how Gibson later confesses that the evidence submitted to the ‘inquiry’ was not recorded on any central list, nor was it distributed to the members of the committee by any central distribution process in any way. Despite the only twenty days allowed by Gibson for the ME/CFS community to submit evidence to his ‘inquiry’, people still took him at his word, forlornly hoping against misplaced hope that this would be the fair process breakthrough so

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desired. Evidence in the form of papers, CDs, books and letters began to pour in to the ‘inquiry’ office. Many requested a receipt for their evidence. In the majority of cases, no receipt was given. Gibson was finally forced to extend his twenty days only evidence submission allowance due to ME/CFS community disquiet at its unfairness. The administrative chaos that has been the hallmark of Gibson’s GSRME ‘inquiry’ began. Key Statement: The structure of Gibson’s ‘inquiry’ became a matter of serious concern from the outset. Despite the intervention of another MP and a national newspaper journalist attempting to garner this most legitimate information in relation to the ‘inquiry’s’ structure, it took the threat of a demonstration outside the House of Commons to persuade Gibson to part with the information required. The administrative chaos and lack of openness and transparency that has been the watchword of Gibson’s 'inquiry' was evident from the earliest stage. 5.1 GSRME Committee Members “I believe it to be improper that, as a condition of participation, the ME community has found itself having to submit evidence to an unknown committee whose membership has not been finalised and without knowledge of any members' conflicts of interest.” ‘Inquiry’ architect Kevin Short writing to GSRME Chairman Dr Ian Gibson MP, 31 December 2005. In March 2006, Gibson finally announced the names of his GSRME committee members. The One Click Group then researched and published The ME/CFS Gibson Inquiry Exposed on 30 March 2006. This focussed on the background of those personally invited by Gibson to join his committee. We have now updated this material and include it in this document. Dr Richard Taylor MP (Vice Chair) KHHC (Kidderminster Hospital and Health Concern) Party, Independent, Wyre Forest. Before entering politics, Richard Taylor was previously a doctor and a former consultant physician in Rheumatology at Kidderminster hospital. Dr Richard Taylor is a member of the Associate Parliamentary Group on Health, set up by the pharmaceutical lobby group Networking for Industry. Writing in THE GHOST LOBBY on New Labour and the Pharmaceutical Industry in December 2004, Martin Walker says: "There can be no doubt that some of the members of this group have no idea that they are a part of a manoeuvre by a lobby group. Some other members are in positions where they may be pressured by lobbying organizations, while others appear themselves to be familiar with the terrain of lobbying and pharmaceutical marketing." Dr Taylor’s involvement with the Associate Parliamentary Group on Health is a matter of concern. Dr Taylor is also a member of the All-Party Parliamentary Group on Cancer that is heavily funded by the pharmaceutical industry. In addition, Dr Taylor is a member of the Cross-Party Group of MPs that is calling for investigation into the high incidence of false accusations of Munchausen Syndrome By Proxy/Fabricated or Induced Illness (MSBP/FII) in the United Kingdom. On October 2006 and in his capacity as a member of this group's committee, Taylor launched a nationwide campaign calling for the withdrawal of the United Kingdom guidelines on MSBP/FII. One Click the MSBP/FII Survey that includes

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the covering letter from Taylor at the House of Commons. See The Consensus Report: Family Law Reform that illustrates why this guidelines withdrawal must be performed with immediate effect. Taylor’s membership of the Cross-Party Group on MSBP/FII makes his subsequent support of the construct of MSBP/FII in young children, as he has done in the Gibson Report, a matter of serious concern. The findings of Gibson et al and the construct that the Group has placed on MSBP/FII in young children will by implication lead to many more of these children being forcibly removed from their homes. This construct has been endorsed by the Group whilst Dr Richard Taylor MP campaigns for this injustice to be corrected via the Cross-Party Group of MPs to which he belongs. This behaviour represents either political incompetence, malfeasance or having your bread buttered on every side possible – a far from atypical political dish, much to the consternation of the electorate. Ms. Ann Cryer MP (Secretary) Labour, Keighley. On her proudest achievement in parliament since 1997, Ann Cryer says: "I'm most proud of my adjournment debate on forced marriages of British-Asian women in 1999. Since then the government has acted, setting itself an action plan which offers help to women who were without it before." Quite why Ann Cryer was invited to join Gibson’s Group is an enigma. She subsequently resigned from the Group on the 27 November 2006, one day after the Gibson Report had been published, citing other commitments. Rt. Hon Michael Meacher MP Labour, Oldham West and Norton. Michael Meacher was Minister of State for the Environment for five years until June 2003. An example of Meacher’s work for the environment is to be found in his involvement in the Camelford Inquiry. The water supply to some 20,000 people in the Camelford area of North Cornwall was polluted in July 1988 when 20 tonnes of aluminium sulphate was placed into the wrong tank at the then South West Water Authority’s unmanned Lowermoor water treatment works. Professor Malcolm Hooper et al wrote in the Concepts of Accountability document and stated: "In the Camelford incident, seven people died, 25,000 suffered serious health effects and 40,000 animals were affected; a study commissioned by lawyers acting on behalf of the Camelford plaintiffs and funded through Legal Aid (as opposed to the Department of Health) showed conclusively that those residents who were exposed to aluminium sulphate-contaminated drinking water suffered considerable damage to cerebral function which was not related to anxiety, and that there is objective evidence of organic brain damage which is compatible with the known effects of exposure to aluminium.” Dr Simon Wessely (now a professor) and his colleague expressed the view that the symptoms of which the residents complained after the event were simply normal bodily sensations and that the behaviour was caused by anxiety about the state of the environment and chemical toxin. Such fears, they claimed, "often appear in controversial fields such as environmental medicine and clinical ecology." Michael Meacher, to his absolute credit, came to the attention of Health Advocates when he asked The Lowermoor Subgroup of the Committee on Toxicity to re-examine the effects of the incident.

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In theory, Mr. Meacher’s involvement should have lent credibility to the workings of this ‘inquiry’. In practice, he appended his name and signed off on the Gibson Report where even a cursory examination of the facts should have given him the most serious pause for ethical thought. One can but surmise that Mr. Meacher’s announcement that he has in mind to stand for the Deputy Leadership of the Labour Party has perhaps unfortunately served to focus his mind elsewhere at this time. Dr Des Turner MP Labour, Brighton Kemptown. Dr Turner has been a member of the All Party Parliamentary Group (APPG) for ME for eight years. He is now its new Chairman. Since its inception, the APPG has favoured the psychiatric lobby and denied access, until very recently, to any groups opposing the psychiatric paradigm of ME/CFS. All debate and provision of biomedical information over this issue has been deliberately and unethically stifled by the APPG by corruption of due process. Dr Des Turner is a long time charity Patron of the Kent & Sussex ME/CFS Society run by one Colin Barton, infamous for his harassment of ME/CFS advocates who seek to promote the biomedical evidence in relation to ME/CFS. The Kent & Sussex ME/CFS Society is notorious for the support that it has provided to the Wessely school psychiatric lobby and to the charity Action for ME (AfME) whose financial involvement with same is documented in THE AFME DOSSIER, updated August 2006. Barton and his colleague Joe Marsh of the very same Kent & Sussex ME/CFS Society of which Turner is Patron support the psychiatric paradigm on ME/CFS to such a degree that the pair of them organised the UK tour of psychiatrist Peter White in his touting promotion of the fraudulent psychiatric PACE and FINE trials that are wasting over £11.1m of British taxpayer's money. (See The PACE Report, April 2004). Barton and Marsh are also the individuals and charity officials who have ceaselessly harassed selected ME/CFS advocates with cascades of unsolicited emails and have been on the receiving end of police action for publishing private information that could do harm – Crime Reference Number 2522138. Turner is fully aware of the actions that have been carried out in his name as Patron of the Kent & Sussex ME/CFS Society. Barton has never been shy of broadcasting his doings and keeping all informed of his actions as the police will verify. Turner is also a member of the Select Committee on Science and Technology of which Dr Ian Gibson used to be Chairman and is a member, together with Ian Gibson and Richard Taylor, of the All Party Parliamentary Group on Cancer that is heavily funded by Big Pharma names. Gibson’s personal invitation to Turner to join his committee and his public endorsement of the work of this man in relation to ME/CFS proved to be yet another nail in the ‘inquiry’ coffin. David Taylor MP Labour, Leicestershire North West. David Taylor is a member of the All Party Parliamentary Group on Mental Health for which The Royal College of Psychiatrists provides administrative assistance. David Taylor launched a Commons Early Day Motion (EDM) 260 in June 2005. This motion called for the government to spend more on scientific research into

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Myalgic 'Encephalopathy' - the incorrect term propagandised by Dr Charles Shepherd of the Myalgic ‘Encephalopathy’ Association charity and the psychiatric lobby in order to strip ME/CFS patients of the neurological classification of this illness provided by the World Health Organisation and supported by the UK government as Health Minister Lord Warner had stated. On 14 June 2005, One Click wrote to Mr. David Taylor informing him that he had used incorrect disease terminology in his EDM as stated by Health Minster Lord Warner and asked if he could possibly make a suitable Amendment since use of this incorrect disease terminology of 'Encephalopathy' in favour of Myalgic Encephalomyelitis goes against the World Health Organisation rubric to which the UK government is signatory. David Taylor and his office prevaricated at length, day after day, week after week and month after month. Anything except accede to this most reasonable request and remind this parliamentarian of the statement by the Health Minister Lord Warner that this is the term that must be used by the United Kingdom government. When David Taylor MP was asked by One Click the source of his incorrect disease terminology in the production of his EDM on ME/CFS, the response came that this had originated from Colin Barton's Kent & Sussex ME/CFS Society and the charity Action for ME (AfME). Taylor's office maintained that they would attempt to find an MP who would produce an Amendment to the EDM. As the months passed, not a single one could apparently be found. It would seem that parliamentarians were either indifferent to the rights of their ME/CFS constituents or that Taylor and his office did not look very hard. On the 4th July 2005, David Taylor MP wrote to One Click "Don't both Action for M E and the M E Association use the same [Encephalopathy] word?" One Click the David Taylor correspondence. David Taylor's links with the All Party Parliamentary Group on Mental Health are self evident, as are his links with the ME/CFS charities, some of which are evidentially corrupt. Lord Turnberg Lord Turnberg is notorious amongst ME/CFS watchers for his support of Professor Simon Wessely and the psychiatric paradigm on ME/CFS. Lord Turnberg's appointments have included: President of the Medical Protection Society; Chairman of the Board of the Public Health Laboratory Service; President of the Medical Council on Alcoholism; Scientific Adviser to the Association of Medical Research Charities; Trustee of the Wolfson Foundation; Vice President of the Academy of Medical Sciences; and, most recently, Chair of the UK Forum for Genetics and Insurance et al. Lord Turnberg and Dr Ian Gibson are both members of the All Party Parliamentary Group on Medical Research. On 22nd January 2004 it was stated in the House of Lords by Lord Turnberg that the charity Action for ME (AfME) is working closely with Professor Simon Wessely and his colleagues in the psychiatric lobby. As Professor Sir Leslie Turnberg, it was under his auspices as President of The Royal College of Physicians that the biased and much-criticised Joint Royal Colleges’ Report on CFS was produced in 1996 that he fully supported.

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It is Lord Turnberg who is recorded in Hansard (HL4254) as asking Her Majesty’s Government “What is their position on cognitive behaviour therapy for chronic fatigue syndrome as recommended by Professor Simon Wessely and colleagues”. During the debate on 22nd January 2004, the Health Minister (Lord Warner), alluded to the fact that Professor Wessely had received a research medal specifically for his work on CFS/ME, (not, Lord Warner was at pains to point out, from the Royal College of Psychiatrists but from the Royal College of Physicians). What Lord Warner failed to mention was that the medal was awarded whilst Lord Turnberg was President of The Royal College of Physicians. Lord Turnberg has exhibited overwhelming psychiatric bias in his dealings with ME/CFS throughout. Baroness Cumberlege Career: Executive director, MJM Healthcare Solutions 1997-2001; Non-executive director Huntsworth plc 2001-03; Consultant, Quo Health 2001-; Founded Cumberlege Connections April 2001; Director, Assuming Better Practice (UK) Ltd 2004Baroness Cumberlege was a Conservative health minister at the time of the launch of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002. A member of the Associate Parliamentary Health Group (APHG) with a considerable background in pharmaceutical industry public relations and lobbying, Baroness Cumberlege could well be construed by many as the drugs company rep on Gibson's 'inquiry'. In his seminal paper THE GHOST LOBBY on New Labour and the Pharmaceutical Industry, December 2004, Martin Walker writes: "Undoubtedly, the two heavyweights of the APHG and its group of advisors are Baroness Cumberlege, who is both a member and an advisor, and Lord Hunt of Kings Heath, an advisor. Despite coming from different sides of the House, these two peers have a lot in common. They were both minister of health, Cumberlege during the premiership of John Major from 1992 to 1997, and Hunt from 1999 to 2003. They are both NHS modernisers, and they both have had dealings with pharmaceutical companies. But, perhaps most perversely, Lord Hunt is a director of Baroness Cumberlege’s NHSintegrated health consultancy company, Cumberlege Connections. When Baroness Cumberlege was elevated to the Lords, she began the long haul through PR and health consultancy companies, which ended in 1993 with Cumberlege Connections, a consultancy that organises conferences and training courses to equip people to deal with government and the NHS. On her way to Cumberlege Connections, the Baroness passed through some more and less prestigious companies. From 1997 until 2001, she was an executive director of MJM Healthcare Solutions, which, with its sister organisation, Mental Health Strategies, is part of Niche Healthcare Consulting. In 2001, she joined the board of Huntsworth plc. The company, ‘a specialised communications group with public relations at its core’, is comprised of a number of market service consultants, whose main clients are Astra Zeneca, Pfizer, Chiron

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Evans vaccines, Merck, Shire, Aventis, Novartis, Roche and Abbott Laboratories. In 2001, Cumberlege apparently left Huntsworth, to team up with Anthony Mckeever, a senior NHS executive who moved to the private sector, as co-director of Quo Health. In January 2003, Quo Health was listed by New Labour as one of eight private companies added to the Franchising Register of Expertise, enabling it to submit management bids for failing NHS hospitals." The Countess of Mar Career: Civil Service clerical officer 1959-63; Post Office/British Telecom sales superintendent 1969-82; Farmer and Cheesemaker 1982The Countess of Mar became ill after exposure to organophosphates in sheep dip. Since that time and until relatively recently, she has campaigned excellently for the rights of ME/CFS sufferers and Gulf War Veterans and has posed many questions to benefit patients and support their rights in the House of Lords. Recently, the Countess of Mar has done very little apparent work in this regard. Instead, Lady Mar has elected to support The PRIME Project funded by Great Universal Stores (GUS) over which there has been much controversy. In Brave New World of Zero Risk, covert strategy in British Science Policy, October 2005, Martin Walker writes: "The PRIME project has entered the ME community as a wellmanaged insurgency campaign. Having lumped together all the illnesses that make up CF syndromes, they now want to separate all the patient groups from any political leadership that has emerged. They have sent in their best operators to pacify the patient population, and pursued them to acquiesce in an expensive series of useless trials, which will enable the State to erect a minimal system of services provision, through which thousands of designated mentally ill individuals can be cared for ‘in the community’. These individuals will also be studied in relation to any psychological manifestations of their illness." The PRIME Project has the Countess of Mar's full support. In her role as Patron for the charities The Young ME Sufferers Trust (TYMES Trust), MERGE (now trading as ME Research UK) and The 25% ME Group, the Countess of Mar stood by in December 2004 whilst these charities, both actively and tacitly, colluded with the psychiatric lobby in the production of excoriatingly damaging Royal College of Paediatrics and Child Health Guidelines (RPCH) on ME/CFS in children. This is the Guide for doctors and health professionals that has served to compromise the health, well being and future prospects of every single child and young person labelled with ME/CFS in the United Kingdom, all 40,000 of them. This represented a scandal of massive proportions. In April 2005, the Countess of Mar attempted to have the co directors of The One Click Group criminally prosecuted for placing evidenced and referenced information on ME/CFS and placing it in the public domain with especial reference to the aforementioned RCPCH Guidelines. See The Underbelly of ME/CFS Politics Revealed. If Mar et al’s prosecution had been successful, this could have carried a prison sentence for the Health Advocate mothers of two very sick children. This entire travesty orchestrated by Mar and her colleague Jane Colby, CEO of The

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Young ME Sufferers Trust (TYMES Trust) charity and others, is now the subject of a Formal Inquiry being held under the auspices of the Independent Police Complaints Commission. The ME/CFS diagnosed children in question have never recovered from Mar’s actions. Mar has subsequently endorsed the Gibson Report to the full, despite its support of the discredited and scientifically unsubstantiated MSBP/FII theories, thus posing the gravest of threats to young ME/CFS labelled children. Previously an ME/CFS campaigning advocate, Mar’s endorsement of the Gibson Report that has reinforced the contention of ME/CFS as a psychological disorder has gone some considerable way to unfortunately ruining any advocacy credentials that might remain to her. In the document that One Click published on 30 March 2006 entitled The Gibson ME/CFS ‘Inquiry’ Exposed we concluded our analysis of the cast list of Gibson’s ‘inquiry’ by stating: “All in all and having explored the background of the Members of Gibson’s ‘Inquiry’ into ME/CFS and the conclusive involvement by some with the government corporate spin lobbying groups, the pharmaceutical industry and ME/CFS, the future of this ‘Inquiry’ does not look promising. The fact that no QC or Judge is at the helm of this ‘Inquiry’ is a severe blot on its escutcheon before it even begins, thus failing to inspire either faith or trust.” “To steadfastly ignore the political context and realities which inevitably surround an issue such as a so called 'Independent' 'Inquiry' on ME/CFS when proffered by a politician such as Dr Gibson whose links with Sense About Science, Genetically Modified crops and the buddies of Dr Michael Fitzpatrick and his ilk that are well known is the uttermost folly.” “One must question as to whether Gibson's ME/CFS Group being assembled at this time is merely a deliberate attempt to shift focus and deflect away from the scientifically fraudulent PACE and FINE trials wasting millions of pounds sterling of British taxpayer's money whilst experimenting on a captive patient population.” As you can see, with those invited by Gibson to sit on his committee, even a token semblance of the notion of the concept of independence was swiftly expelled. Cassandra’s Curse strikes again. 6. THE ORAL HEARINGS “I get the distinct impression that this last year has been a huge waste of time if this group cannot (or does not want to) make any firm conclusions. I would also note that this ‘inquiry’ demonstrates the ineffectiveness of government, and the huge waste of time and money involved in engaging with any political body.” Dexhaven, Initial Thoughts – Gibson Inquiry, 27 November 2006. (Appendix 1) Consisting of five presentations in all taking place from April 2006 to July 2006, Gibson is to be absolutely commended on the wide range of participants invited to present evidence to this ‘inquiry’ that included doctors from abroad such as Bruce Carruthers and Byron Hyde. It should be noted however that this wide range of presenters had nothing to do with the research carried out by Gibson over who and what organisation would be deemed appropriate for this ‘inquiry’,

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but down to considerable lobbying pressure levied by the ME/CFS community itself. Details of who presented evidence to the ‘inquiry’ are available from its website (set up by a member of the ME/CFS community free of charge and months after the ‘inquiry’ began) at: http://www.erythos.com/gibsonenquiry. The entirely shoddy and amateur nature of Gibson’s Group is starkly illustrated by the fact that not all of the GSRME committee members troubled themselves to show up at the Oral Hearings. It is unknown as to whether the missing committee members bothered to subsequently review the information contained in the evidence presentations. Although Gibson states on his ‘inquiry’ website that all Oral Hearings were open to the general public, this is yet another piece of incorrect manipulative spin and is absolutely not the case. Two of the presentations to the GSRME were to all intents and purposes deliberately held in camera. No advance notice of Oral Hearings 2 and 3 were placed in the public domain. This is particularly relevant in relation to Oral Hearing 3 that included psychiatric lobby presentations from Peter White, psychiatric leader of the scientifically fraudulent PACE trial, mental nurse Trudie Chalder and psychiatrist Anthony Cleare. Not only were members of the ME/CFS community deliberately given no knowledge that Oral Hearing 3 was to take place, but the Minutes of this crucial presentation have never been placed in the public domain. When questioned as to this lack, Gibson maintained that the notes taken at that meeting by Administrator Ian Woodcroft were illegible and that tape recordings had failed to be made. Thus the ME/CFS community has never been privy to the details of what occurred during the determinative Oral Hearing 3 devoted to the evidence provided by the psychiatric lobby that has done them so much damage. A patient echoed the sentiments of the majority of the ME/CFS community when he wrote: “It is an absolute disgrace that MPs pick and choose who they believe are acceptable people to be allowed right of access to Inquiries and meetings. That is not democracy. Parliament is now nothing more than a 'neutered poodle'.” Key Statement: With two of the Oral Hearings held to all intents and purposes in camera and Minutes of the crucial psychiatric lobby presentations never placed in the public domain together with selected Gibson Group committee members failing to turn up at the Hearings, the Gibson 'inquiry' began to resemble the worst workings of an unaccountable Banana Republic, leading to intense patient disquiet and dismay. 7. THE EVIDENCE From the very start of the announcement of this ‘inquiry’ with that so called ‘press release’ of 1 December 2005 despatched by Gibson’s office to the ME/CFS charities, massive concern has been exhibited over what has happened to the evidence submitted. Many organisations and individuals never received a receipt, despite repeated and ongoing request. This did not bode well. Even though the Terms of Reference of the ‘inquiry’ had changed dramatically since this fully fledged concept was first mooted by Gibson at that meeting between himself, Professor Malcolm Hooper and Kevin Short et al on the 28 July 2005 and it was absolutely clear that far from the badly needed judicial investigation with a judge or QC at the helm, this was to be a jumbled unofficial Group with no status, authority or powers, still people hoped against hope that Gibson would keep to his word and “get to the bottom of things” on their behalf.

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For the last twenty years, ME/CFS labelled patients, including those as young as six months old, have been faced with the most appalling treatments at the hands of the psychiatric lobby that have irredeemably compromised their health. On this basis and with the history of what had been done to patients, people, as it turns out wrongly, believed that if they could just submit all the copious evidence available inclusive of the knowledge of the literally thousands of biomedical papers that proved the biologically basis of ME/CFS, Gibson and his colleagues would listen. Therefore and to this end, a massive amount of extremely first class, high quality evidence was submitted to Gibson. Concerns about whether the evidence submitted to Gibson’s Group would be handled correctly were aired by Professor Malcolm Hooper and Kate Stewart (operating under the pseudonym of Margaret Williams) on the 20 November 2005 who wrote in their document entitled Evidence-based Policy or Policy-based Evidence? "A second point of concern is that past experience has demonstrated that documents that have been submitted to official bodies such as the Chief Medical Officer's "independent" Working Group and to the MRC RAG that are deemed not to accord with current "policy" have simply disappeared without trace; this being so, the ME community would be re-assured to have access to a list of documents that have been or will be submitted to the Inquiry." "Another point of concern relates to the way in which the necessary evidence will be collated and presented to Inquiry members in an assimilable manner; given the sheer amount of such material, this would seem to be a major logistical problem." We now know that these concerns were completely valid, as we will show. Any ‘inquiry’ of any kind – be it an unofficial and disreputable such as the one organised by Gibson, or a proper investigation with teeth and powers – should be based on the evidence provided that is supposed to have been diligently perused in full and at length by the committee, together with full attendance of members of the committee at the Oral Hearings. In the case of the Gibson ‘inquiry’, key Oral Hearings were to all intents and purposes held in camera, presentations made by key witnesses were not placed on the ‘inquiry’s’ website and Minutes made of selected presentations (crucially and most importantly from Oral Hearing 3, devoted to the psychiatric lobby) failed to be placed in the public domain. The kindest thing that can be said of this ‘inquiry’ upon which the hopes of 240,000 sick patients rested is that it was a complete and utter secretive imbroglio. Upon publication of the Gibson Report, it was clear that the conclusions of the report were very light, considering the amount of evidence provided, that some of the contents were medically and scientifically illiterate and that enormous failings were inherent, not the least of which was the fact that the report reinforced the contention that ME/CFS is primarily a psychological problem. Far from focussing attention on the biomedical evidence in relation to ME/CFS that already exists and the unacceptable level of discrimination and abuse that ME/CFS sufferers face, the Group had sought to promote the government/psychiatric lobby centrepiece of the ‘CFS/ME’ centres and further demonstrated the negligent attitude of the government towards people labelled with ME/CFS.

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The participants in the One Click Campaign then wrote to us in their droves and asked, bearing in mind the shambles of the ‘inquiry’ administration and the secrecy that surrounded the entire project, what had happened to their evidence and how had it been used by the GSRME Group? On 4 December 2006, The One Click Group despatched a formal email on your behalf to Gibson’s office and posed the following most basic questions: “There has been much ME/CFS community unease over what has happened to the evidence that patients, carers health advocates, researchers and doctors et al put forward for the Gibson Inquiry. Many never received acknowledgements for the evidence that they produced, despite repeated request. People do not understand how, with the high quality of evidence provided and the amount, that the inquiry has come out as it has. It would appear that this inquiry was chaotic to a degree. Administrator Ian Woodcroft left half way through. Minutes made of presentations to the inquiry got 'lost' and never made it up on the inquiry website. All Gibson Group members did not always attend the presentations. The most controversial presentations were made in camera to all intents and purposes because the Gibson Group did not publicly announce that they were taking place etc. There has been much disquiet over this process that has directly affected people's health and lives. People have very legitimate questions over this evidence issue and I would be grateful if Dr Gibson's office could please answer the following: 1. Where is all the evidence provided located? 2. How has this evidence been collated and catalogued? 3. Was *all* the enormous amount evidence submitted distributed to all the members of Gibson Group, or only a part of it? 4. How was this evidence circulated to the Gibson Group? By photocopying and distributing documents? We would be grateful if you could please explain the mechanism that was adopted. 5. If only a part of the enormous amount of evidence provided to the Gibson Group was circulated to them, who made this decision on what material was to be circulated and what was to be put aside? How was this decision made? 6. Will it be possible for those patients, carers and health advocates who submitted evidence to the inquiry have the material be given back to them if they decide that they want this? 7. Can we please have a copy of the list of all the evidence collated, catalogued and submitted to this inquiry? Patients, carers and health advocates put an enormous amount of time and effort into providing very high class evidence for this inquiry and many have been badly upset by this report. They therefore naturally seek to learn details of the mechanism of how this report

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has come about and what has happened to their evidence. This knowledge will also assist us in producing The One Click Group Response – The Gibson Report.” Having received no acknowledgement of this communication, we wrote to Gibson’s office again on 6 December with the questions. Instead of providing a swift response to these most basic questions that would have taken a matter of minutes to answer, Gibson’s office wrote to us with the following: “…we have devoted a solid month to our ME patients and we must now devote time to Cancer and mental health patients, as well as all the other political issues which change daily. We will be organising a meeting where you can raise all these queries and others…” Bearing in mind that the evidence questions were absolutely key in understanding how the Gibson ’inquiry’ had reached its conclusions and that this entire matter was of massive and documented concern for ME/CFS patients, this provocative evasion tactic was simply not good enough. On the 6 December we telephoned Gibson’s office to get the answers. To protect ourselves and to ensure that there could be absolutely no demur of what took place, we took the precaution of tape recording the conversation. 7.1 Lies, Damned Lies We provide the chronology of events that took place on the 6 December 2006, that include recorded statements that Gibson swiftly changed a few weeks later. Gibson and his researcher maintained: 1. We could not be given a copy of the Evidence List because this was subject to Data Protection legislation. (This statement turned out to be a red herring entirely). 2. That the evidence was collated and catalogued by the first ‘inquiry’ Administrator, Ian Woodcroft. (This statement was subsequently corrected by Gibson. There was no central list of the evidence made and the evidence itself was in fact shoved into filing cabinets in Gibson’s office.) 3. Firstly, on tape that the evidence was made available to the Group in library format where members of the Group could access it and take it away at any time. With Gibson at her side and his interjection clearly audible on the tape, Gibson’s researcher then corrected herself at Gibson’s behest and stated that all members of the committee had in fact been provided with distributed evidence. When One Click requested that all the answers to the evidence email be placed in writing to avoid any confusion, Gibson himself took the telephone away from his researcher and got on the line. As the tape recorded conversation proceeded with the abusive and bullying manner that is the trademark of this MP, Gibson threatened us with litigation if we published what he had said. Gibson refused to answer the evidence questions, refused to give a date as to when he would specifically respond and then went berserk, shouting “If you publish this, I am going to sue you!” We published and no legal proceedings have been undertaken by this litigious mendacious bully of an MP to date since attempting to undertake court proceedings when the facts are self-evident would be a ridiculous undertaking, even for Gibson.

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Finally and on the 13 December, Gibson answered the evidence questions after a fashion and stated that: * The evidence is filed alphabetically and kept in filing cabinets in his office. * The evidence was not circulated to committee members. If they wished to access it, they could do so via a library system and they could remove or copy information at their discretion. (This directly contradicts what was stated during that tape recorded conversation on 6 December 2006.) * The evidence would not be returned to those who submitted it. * Gibson maintained that nobody was entitled to see a copy of the Evidence List as this contravened the Data Protection Act. Gibson’s Data Protection contention was, of course, risible. If an MP or a member of the Lords is dealing with individual business from one of their constituents, then obviously this becomes confidential information. This does not apply if the material in question is evidence that is supposed to be used to inform the conclusions of an ‘inquiry’. Gibson’ s overt litigious bullying tactics and his refusal to provide the Evidence List was by now causing concern amongst patients and health advocates around the world. We therefore wrote to Gibson again on the 14 December 2006 and requested a copy of the Evidence List under the Freedom of Information Act. Firstly, Gibson played for further time over the Evidence List issue and farcically announced that a fee might be payable in order for him to provide this information and that we might be charged for man hours in the copying and posting of an item that he knew did not exist. Gibson finally responded to our Freedom of Information Act request on the 21 December. He firstly stated that because his Group was entirely unofficial, its workings were completely unaccountable and it was therefore not subject to any scrutiny from Freedom of Information legislation or any other. Finally and at last coming to the crunch of the matter, Gibson announced that all of this Freedom Of Information Act business had been a complete and utter red herring because the real reason that we could not be provided with the Evidence List of material submitted to his ‘inquiry’ is because he and his office had failed to ever make one. There is no central list of the evidence provided to this ‘inquiry’. This alone negates the findings of Gibson’s ‘inquiry’. So there we have it. This is what has happened to the evidence that so many people spent so long preparing in good faith. In Summary: 1. Gibson singularly failed to make any central Evidence List for this ‘inquiry’. He then deliberately created red herrings over this issue, attempted to create smoke screens and bullied, abused and threatened anyone who asked for it 2. No central evidence distribution system was put in place and the evidence was not formally circulated to the members of the committee.

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3. It is unknown which committee members accessed the evidence and how, if at all. Firstly announcing that the evidence was made available by a library card system, then denying this on tape, then changing their minds again and maintaining the library card system was indeed the one used as set out in the email sent to One Click on 21 December, all matters concerning the evidence submitted to this ‘inquiry’ remain as clear as manipulated mud. This, coupled with the administrative chaos that has been the hallmark of Gibson’s ‘inquiry’, make the evidence issue as arcane and mysterious as possible. 4. As Gibson has admitted in his ‘Interview’ with himself published on the ‘inquiry’ website, a swathe of the evidence was only seen by “one member at least” of the Group, presumably himself. 5. Committee members often failed to turn up at the Oral Hearings. It is unknown if Gibson subsequently circulated the contents of the presentations to those members who failed to attend. 6. Key presentations were held in camera to all intents and purposes, with the ME/CFS community failing to be given knowledge that these presentations were taking place. 7. Selected presentations to the Oral Hearings failed to materialise on the ‘inquiry’s’ website. 8. Selected Minutes made of the Oral Hearings were apparently illegible and so failed to be placed in the public domain. This is what occurred over the crucial psychiatric lobby Oral Hearing 3. 9. Gibson and his staff failed to tape record all the Oral Hearing sessions. So there we have it. This particular episode shows the true colours of Dr Ian Gibson MP, possibly more than any other. Rather than confess that the conclusions arrived at by his ‘inquiry’ had been based on no central evidence system of any kind with no Evidence List made available for members of his committee or anyone, he was prepared to abuse, to lie and to threaten litigation rather than admit this most crashing failure. Bearing in mind the documented flaws in the Gibson Report with its scientifically and medically illiterate contents in part and with the awful damage that it has done to the ME/CFS labelled children, it is perhaps not surprising that Dr Gibson would clearly rather have had his toenails pulled out by red hot pliers than admit to the atrocious way that he has dealt with the evidence submitted to this ‘inquiry’. How can one trust the findings of this report if one does not know on what evidence the findings were based? Dr Ian Gibson MP lied on tape over the evidence issue. The phrase “Trust me, I’m an MP” takes on a whole new meaning when having to engage with the likes of Dr Ian Gibson MP. Key Statement: Amidst bullying abuse and threats of litigation, Dr Ian Gibson MP finally admitted that there had been no Evidence List produced for the 'inquiry', that the evidence had not been distributed by a central process to members of the committee and that swathes of the evidence had only been seen by “at least one member of the Group”. Committee members had often failed to attend the Oral Hearings, selected Presentations were never published on the

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'inquiry's' website, Minutes of selected and crucial Presentations were never published and Dr Gibson failed to tape record all the Presentations. Dr Ian Gibson MP lied on tape over the evidence issue. We have absolutely no idea who has seen which pieces of evidence, if any at all. How can one trust the findings of this report if one does not know what evidence was used on which it based its findings? 8. REPORT CONSULTATION DENIED Roughly two minutes into his keynote address at the charity Invest in ME (IiME) conference on the 12 May 2006, Dr Ian Gibson MP, Chairman of the GSRME, publicly announced: “We will have the Minister in...and ask them what their attitude is, and she will have her officials with her, so in that sense it’s going to be a formal ‘inquiry’ - there’s going to be a report. I’m absolutely determined to get that report out before we break up at the end of July. We have a debate and we hit the media airwaves with it after we’ve got consultation from groups, like your group here.” A few minutes later, Gibson stated: “...I wish I had the ‘inquiry’ results in front of me now, so you could say hang on a minute - that’s nonsense or whatever...” Shortly thereafter and on the 26 June 2006, Gibson wrote to ‘inquiry’ architect Kevin Short and announced: “I hope to have the website and minutes in place before the report is published, this should give everyone a chance to comment on the evidence we collected before publication.” Although Gibson categorically stated at that time that the contents of this report would be up for consultation prior to publication, absolutely no consultation with the ME/CFS community who had been at such pains to provide such high quality evidence for the ‘inquiry’ ever took place. To confirm that none of the scientifically illiterate errors in the Gibson Report would be corrected, Gibson subsequently wrote to One Click on 28 November 2006, 17:27 and stated: “The Gibson Inquiry is not out for consultation/amendment. The aim of the report is to reflect the opinions of the Group after spending a year receiving and reviewing evidence.” Quite how this committee has dealt with the evidence in no way stands up to even the most cursory scrutiny. Key Statement: Gibson had previously stated categorically and in public that the report coming out of this 'inquiry' would be subject to consultation from the ME/CFS community prior to publication. This never took place. When the report was finally published with scientific illiteracy and positively dangerous flaws contained therein, Gibson announced: “The Gibson Inquiry is not out for consultation/amendment. The aim of the report is to reflect the opinions of the Group after spending a year receiving and reviewing evidence.” How the evidence was reviewed, if at all in any meaningful way, is a massive bone of contention. 9. NO NICE EVIDENCE The Gibson Group, as with One Click, are registered Stakeholders in the development of the CFS/ME Draft Guidelines being produced by the National Institute for Health and Clinical Excellence (NICE) and scheduled for final publication in April 2007. These Guidelines, unless fundamentally altered from Draft, may well be subject to Judicial Review.

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The Gibson Report was eventually published on the 26 November 2006, several months behind schedule. It was submitted to NICE on the 24 November 2006 at the eleventh hour, the final day of the NICE consultation period allowed for the Guidelines. With the GSRME as an official Stakeholder in this government process, Gibson had known of the NICE consultation schedule many months in advance. For the Gibson Report submitted to NICE to be treated as evidence, the contents had to be placed on the NICE online proforma, as dictated by NICE to all Stakeholders. To absolutely ensure and at all costs that NICE would not have to treat the report seriously and respond to it line by line as submitted evidence, Gibson refused to place his report on the NICE online proforma claiming that “Due to our limited resources, we were not able to submit on the pro forma with one day’s notice as we were still putting the final version of the report together.” This is, as so much with the Gibson ‘inquiry’ and report, a risible contention. A mere 35 pages long and with absolutely no live links and references contained therein, copying and pasting the contents of the report on to the NICE online proforma would have taken even a five year old child approximately fifteen minutes copy and paste time at maximum. Quite how Gibson’s “limited resources” affected the ability to copy and paste is an item that Gibson has studiously failed to explain. The result is that Gibson’s report was submitted to NICE in the knowledge that NICE would receive this Report on a ‘for information purposes only’ basis. NICE can ignore the contents of this document if it chooses to do so entirely. In doing so, the Gibson Group were fully aware of the implications of their actions. From the disreputable unofficial status of the ‘inquiry’ that has given it no scientific credibility, to the refusal to submit the report as evidence to NICE, Gibson’s tactics throughout this exercise have been entirely disreputable. Key Statement: The Gibson Report was submitted to the National Institute for Health and Clinical Excellence in the knowledge that NICE would receive this report on a ‘for information purposes only’ basis. This means that NICE does not have to comment on the contents of the Gibson Report or respond to the Gibson Group; NICE can ignore the contents of this document if it chooses to do so entirely. In doing so, the Gibson Group were fully aware of the implications of their actions. From the disreputable unofficial status of the ‘inquiry’ that has given it no scientific credibility, to the refusal to submit the report as evidence to NICE, the Dr Gibson et al tactics throughout this exercise have been entirely disreputable. 10. GIBSON REPORT LAUNCH "Whatever your discipline, knowledge base, or even your reading, in the contemporary world, unless you understand in a fairly detailed way the spin placed on knowledge by those in power, you will always remain ignorant. Spin is now the developed world’s first language. The lexicon and the strategies change as fast as kids thumbs on a video game remote. Recently in Britain, we have seen the same device used by Ian Gibson MP, who off the top of his own head organised a parliamentary Inquiry into ‘science and ME’. When the report appeared, it identified many of the things which certain doctors and academics were guilty of – suggesting ME existed only in the minds of ME sufferers - and so established them in the official record as being admitted. The confession however, was not completed, for there was no repentance or penitence. When it came to recommendations for action, in reality, it was clear that Gibson and

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others would rather pull out their own toe nails with pliers than obtain or provide the funding for any new way of doing things. Gibson has since moved on to set up another ad hoc inquiry, with no powers, to look at the risks of mobile phones and masts." Martin J. Walker writing in SCOOP! , December 2006. The Gibson Report promised by July failed to appear until four months after its due publication date. It was finally announced by Gibson that it would be published on 26 November 2006 with an embargo placed upon it until 10.00 pm that evening. The utterly flawed and scientifically and medically illiterate in parts Gibson ‘inquiry’ Report was finally published amidst massive controversy and no media coverage of note of any kind. Perusal of the Gibson Report immediately showed that it contained no positive action recommendations, medical and scientific illiteracy, plain nonsense and high farce in parts, combined with dangerous inaccuracies so great that they place patients’ lives at risk by reinforcing the notion that ME/CFS is a psychological problem, plus all the other issues highlighted in this document. In order to cover up this wrongdoing, those involved with the Gibson Group sought to use the tried and tested politician’s method of manipulation and spin in an attempt cover up the report’s failings and execrable contents in part entirely if they could. The objective of this exercise was to manipulate patients into providing Gibson with positive and glowing testimonials as to the report’s contents under false pretences. 10.1 Gross Manipulation and Spin In order to achieve this objective and rather than giving the report up front to the ME/CFS community which is obviously the sensible and honest way that this should have gone down, copies of the report were seeded elsewhere first, days before launch, so that an overwhelmingly positive spin could be placed on it in the form of 'digests' and 'summaries' simultaneous to publication, with all the negatives studiously ignored. This spin tactic is one that has been employed by politicians since time immemorial. Patients, as ever, were the last in the food chain to receive copies of this report. This blatant attempt at patient manipulation now exposed, has made many incandescent with anger and rightly so. 10.2 The Gibson Tape – More Damned Lies The evidence shows that on 25 November 2006, ‘inquiry’ architect Kevin Short published an item out on the internet that stated verbatim: “I received the report early yesterday evening [Friday 24 November, two days before the report was officially published] from Dr Gibson on the strict basis that I was embargoed from releasing it until 10pm on Sunday 26th - with the exception that I could forward a copy to Professor Malcolm Hooper and one other named person. I have abided by this instruction as I felt it right and proper and it was the best course of action all things considered." This named person was Kate Stewart who operates under the pseudonym of Margaret Williams. See the full text of Short’s statement. This advance seeding of copies of the report was done with the full permission and sanction of the ‘inquiry’s’ Chairman, Ian Gibson. On the 6 December 2006 and in that tape recorded conversation with Dr Ian Gibson MP over the ‘inquiry’ evidence questions that he was refusing to answer, Gibson denied that advance seeded copies of the report had been put out with his full permission and attempted to hang ‘inquiry’ architect Kevin Short out to dry. He intoned: “We told Kevin Short that he mustn’t do anything before the report

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Kevin Short

was published. There was an embargo date that gave us time. broke the embargo.”

Short in turn confirmed in a statement issued out on the internet on the 8 December 2006 that he had not broken the embargo by seeding advance copies of the report out to Kate Stewart (operating under the pseudonym of Margaret Williams) and Professor Malcolm Hooper and that this had been done with Gibson’s full knowledge and full permission. Subsequently and claiming personal medical circumstances, Short fell on his sword on the 11 December 2006 and announced that he was quitting all involvement with the Gibson ‘inquiry’ forthwith. 10.3 Kate Stewart/Margaret Williams – The Gibson Group Mouthpiece When report embargo was lifted on Sunday 26 November 2006 at 10.00 pm, literally minutes later and as deliberately pre-arranged with Stewart who has acted as the Gibson Group Mouthpiece throughout this utterly DISGRACEFUL Gibson Report launch business, Stewart kicked off the staged spin using her advance seeded copy of the Gibson Report with which to do it. She immediately published her six page type written summary prepared days in advance that completely lacked any kind of analytical rigour and deliberately skewed what this report actually says by failing to recognise any of the negatives. The primary negative being, amongst the many, that this report deliberately reinforces the contention that ME/CFS is a mental problem, let alone what it does to the ME/CFS labelled children. Because many patients are far too ill to digest the contents of a 35 page report immediately upon publication, patients relied upon Stewart’s summary instead. They trusted her whilst she deliberately misled them. As a result, patients then wrote glowing testimonials of thanks and support to Gibson, under staged false pretences. This was a consequence of this pre-planned manipulation based on spin carried out by Gibson Group Mouthpiece Stewart. It is clear that Gibson and his associates thoroughly attempted to manipulate patients throughout and they succeeded. These ‘previewers’ had deliberately capitalised upon their VIP status with the Gibson’s ‘inquiry’ in order to spin the content and status of the Gibson Report as well as to make claims about the report’s prospective ability to change the fortunes of the ME community at the highest level. In doing so they intended to steer opinion in favour of the positive aspects of the Gibson ‘inquiry’ project by selecting only those issues within the report that suited their purpose and ignoring all other aspects of the report’s contents, the status of the ‘inquiry’ and the problematic history of the ‘inquiry’ project to date. As a result of this gross patient manipulation and spin, Dr Gibson got what he wanted – thanks for the report from patients based on badly skewed information provided by Stewart. Interestingly, Gibson et al had sought to manipulate the patient community over this issue in precisely the same way employed by the psychiatric lobby for so long. Key Statement: In order to grossly and unethically manipulate patient response to the report, Dr Gibson purposefully advance seeded copies of the report days before publication so that badly skewed 'digests' and 'summaries' of the report would be released from previously trusted ME/CFS advocates simultaneously to report publication. These 'previewers' had deliberately capitalised upon their status with the Gibson Inquiry Group in order to spin the content and status of the Gibson Report as well as to make claims about the report’s prospective ability

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to change the fortunes of the ME/CFS community at the highest level. In doing so they intended to steer opinion in favour of the positive aspects of the Gibson ‘inquiry’ project, by selecting only those issues within the report that suited their purpose and ignoring all other aspects of the report’s contents, the status of the ‘inquiry’ and the problematic history of the ‘inquiry’ project to date. As a result of this deliberate, gross and outrageous patient manipulation carried out by these people, Dr Gibson obtained report thanks under politically manipulated false pretences. Dr Gibson subsequently denied advance seeding copies of the report and lied in relation to this issue on tape. 10.4 Professor Malcolm Hooper To further compound the political spin and academic insincerity going down over this 'inquiry', Professor Malcolm Hooper, another advance seeded Gibson Report recipient, then published his Hooper Response - Gibson Report on 5 December 2006. Hooper is yet another who has purposefully suspended all of his critical faculties over this ‘inquiry’ and report at this key juncture. It is extremely twisted to actually publicly witness how and why these once trusted people have pointedly refused to look this thing in the face and smacks of insidious, arrogant and elitist deal-cutting behind the scenes, whilst leaving ME/CFS labelled adults and children to rot. Previously so highly commended by all, Hooper has lost political focus over the Gibson 'inquiry', has become mendacious and has exposed himself as part of the political spin swirling around this report and ‘inquiry’, thus damaging the prospects for patients. Because of this, sadly, we think it now best to look much in the face at this time over this 'inquiry'. Unfortunately, Hooper has dedicated form for this misinformation spin over the Gibson ‘inquiry’ as we now illustrate with the evidence. 10.5 Hooper 'Inquiry' Spin Immediately subsequent to the formal One Click Presentation to the Gibson ‘inquiry’ that took place on 18 April 2006, Hooper wrote and published a set of notes out on the internet about our ‘inquiry’ presentation that deliberately attempted to manipulate and skew what we actually said and that contained a number of crucial factual errors and omissions. This is despite the fact that a copy of our presentation was available from sources everywhere, right around the world, as Hooper well knew. What Hooper did was SO SERIOUS in his attempt to manipulate and skew perception of what the One Click presentation actually contained, that we were forced by his actions to immediately issue a Hooper Corrections Statement dated 22 April 2006 and then to write to each member of the Gibson Group individually to correct this deliberate Hooper misinformation. We wrote to Gibson and his committee on the 23 April 2006: "It has been brought to our attention that Professor Malcolm Hooper, present at the first Oral Evidence Hearing of the Gibson ME/CFS Inquiry although not submitting evidence, has published Notes that have unfortunately misrepresented The One Click Presentation, a copy of which has already been despatched to you by Royal Mail Recorded Delivery. It is extremely important that factual accuracy is maintained about all submissions to the Inquiry, so that groups such

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as ourselves are not misrepresented, as this would have gravely adverse implications for the ME/CFS community and for those groups who submitted evidence. To this end, we are sending you a copy of our corrections made to Professor Hooper's published Notes so that absolutely no confusion over this matter can ensue." One click the full text of Hooper Notes - One Click Writes To The Gibson ME CFS Inquiry. To see these people engaging in such misinformation spin over this 'inquiry' and report has been devastating for many. Why have Hooper et al nailed their flags to the Gibson mast, whilst suspending all critical judgement? Is it just to save face, or is there some deeper motive? Sooner or later, any insidious behind the scenes deal-cutting will come out in the public domain and we would like to place a large bet on this matter and state that this is highly likely to have everything to do with the appalling UK ME/CFS charities. What is currently occurring is entirely redolent of the psychiatric collusion by the charities over the RCPCH Guidelines that have so vividly destroyed the health prospects and well being of every single ME/CFS labelled child in the United Kingdom. 11. DEAL CUTTING? It has clearly been an awful shock to many of you to read the reviews of the Gibson Report produced by Professor Malcolm Hooper, Kate Stewart (Margaret Williams) and Horace Reid and then compare these reviews with what the report actually says. Horribly biased, calling their own glowing reviews as balanced and by implication other reviews as unreasonable, Stewart and Hooper went to bat for Gibson’s scientifically illiterate document in an unprecedented way. Stewart subsequently went so far as to trivialise all flaws in the report as merely “tiresome errors” and the fact that absolutely no positive and practical actions have been recommended as down solely to Gibson Group committee member, prefabricated lightning rod Lord Turnberg alone. For Stewart to maintain that this report has been so badly skewed by one man and one man alone makes one realise that either Gibson’s unofficial ‘inquiry’ is a worse nonsense than anyone ever previously realised or that something more is afoot with these protestations. It would seem that Hooper and Stewart in particular have developed extraordinary feet of clay over the Gibson Report. This is particularly remarkable because throughout the process of the Gibson ‘inquiry’, they were absolutely up to the mark in the papers that they have written, the evidence they submitted and questions over the Gibson ‘inquiry’ that they have posed and placed in the public domain. Much thanks to their efforts from the many are due and this should in no way be minimised. Many were helped very much by what Hooper and Stewart both wrote and published for patients during the progress of the ‘inquiry’. By contrast, when the glowing report reviews were first published by Stewart and Professor Hooper, one ME/CFS advocate was so appalled that she questioned as to whether Hooper in particular, as a previous hero of hers, had been given the same Gibson Report document as the one that she was currently perusing? As time passed and the full meaning of the Gibson Report sank in, we began to get the emails over the Stewart and Hooper reviews. At first arriving in a trickle, as the weeks have passed they have become a torrent that we cannot ignore in this document. We relate your concerns thus.

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As previously stated, two of the people who were advance seeded copies of this report before publication were Kate Stewart and Malcolm Hooper. Both have particularly strong links to one ME/CFS charity, as does the Countess of Mar. Mar’s links to this particular charity are so strong that when The One Click Group published evidence to show that this charity had actively colluded with the psychiatric lobby over the production of the Royal College of Paediatrics and Child Health (RCPCH) Guidelines on ME/CFS in children, Mar sought to have the One Click directors arrested. This illustrates precisely how far these people will go to protect and promote their vested interests. See The Underbelly of ME/CFS Politics Revealed. Rightly or wrongly, it is being surmised by many of those in touch with us that an understanding might have been arrived at behind the scenes whereby support for Gibson’s report might have been rewarded by a donation for research for the charity in question. Time will tell, as they say, and we will see soon enough as to whether the deal cutting surmised by many of you is correct. Key Statement: Many have surmised that a deal was cut behind the ‘inquiry’ scenes, whereby a legitimate research grant would be gained by one of the ME Charities in return for a more favourable receipt of the report by some key individuals. 12. THE MEDIA The New Labour government, more than any other government in British history, has courted the media extensively throughout its tenure and has sought to manipulate the coverage that is given to its policies through a process of spin, manipulation and control. From focus groups to the millions of pounds spent on its various advisers, this government has above all recognised the power of the media. MPs, both collectively and individually, make it their life’s work to gain editorial coverage for themselves and the issues that they espouse in order to keep their profile active and prominent. These politicians have recognised that in the sound bite society of today, their very survival depends on positive media coverage. Nowhere is this media courting more apparent than that carried out by Dr Ian Gibson MP, Labour member for Norwich North, an old die hard media hand with media contacts honed down the years. A few minutes into his keynote address at the Invest in ME charity conference on the 12 May 2006, Dr Gibson announced “I’m absolutely determined to get that report out before we break up at the end of July. We have a debate and we hit the media airwaves with it after we’ve got consultation from groups, like your group here.” Contrary to previous indications from Gibson’s office, no press conference was arranged to launch the report and rather that hitting the media airwaves with it as Gibson had promised, it was deliberately set to trickle away into oblivion, receiving one little paragraph in the Guardian and a couple of dribs and drabs in the local press. The best coverage that was arranged for it in the local press had nothing to do with Gibson, but was driven by a patient. Dr Gibson was absolutely right to announce that positive media coverage on the ME/CFS issue was completely vital in order to alter public opinion, to encourage biomedical researchers to enter the field, to help patients be treated seriously by their doctors and to assist with the obtaining of the Benefits which so many

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patients need to survive. With the New Labour government, media attention frames government policy. So how did Dr Gibson attempt to obtain media attention for ME/CFS and his report? The basic media rules in the twenty-first century go something like this. 1. If you have an item of serious import that because of its intrinsic newsworthiness, you know will leap off the page when it arrives at any News Desk, you send the embargoed item out a couple of days before to all national News Desks and the Press Association. The media then ring up with questions during the embargo period. You answer. You then sit back and wait for the headlines once the embargo has been lifted. Often in these cases, journalists will break the embargo because they want to be first with the story. If, contrary to your expectations, the press don’t bite during the embargo period, you immediately move swiftly on to media options 2 or 3, preferably 3 due to time constraints since a Press Conference is an item usually arranged over an issue such as a report, well in advance. 2. If your item is a complicated issue that requires explanation and endorsement, you hold a press conference, preferably at a prestigious venue such as the House of Commons where Gibson professionally resides, so that details can be provided to the media that do not lend themselves to a basic press release. You bring in spokespeople to the press conference to set out your case and you sell the story in via this public endorsement mechanic. This is what it was understood was set to occur with the Gibson Report. 3. Your third option and one much favoured and very cost effective if you are a public figure, is to use your media contacts and sell the story in, in person with a few judiciously placed telephone calls and possibly a chat or two at one of the many well placed watering holes that positively litter the House of Commons. Canny politician Gibson, having been in the media eye for many a year and knowing these rules like the back of his hand, elected to go with option 1 knowing full well that his report story was of no great import and that it would be purposefully buried without further ado. So much for Gibson’s claimed plans of ‘hitting the media airwaves’ with this report. Contrast what Dr Ian Gibson MP did with the ‘inquiry’ report, to how he behaved after he had insulted all his constituents in Norfolk by publicly accusing them of having a high level of diabetes because they were inbred and being a medical cost burden on the State. Gibson was all over the high profile BBC Radio 4 Today programme like a rash and everywhere else. On issues that matter to Gibson, his media presence in unequivocal. A few judicious telephone calls made to his extensive contacts over the Gibson Report would have engendered coverage without doubt, despite that fact that the report is to all intents and purposes a damp media squib. Without the sell in required, the media drew their own conclusions and recognised that Gibson’s Group was not a Select Committee or an inquiry commissioned by government, or any government department, Parliamentary body, office or agency. Whilst all members of the Gibson Group are parliamentarians, the Gibson ‘inquiry’ is not a ‘Parliamentary Inquiry’ and the report which has resulted is not a ‘Parliamentary Report’ - it is an unofficial opinion piece.

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The fact that Gibson actively failed to use his contacts to promote the report is simply par for the course and says much. However, bearing in mind the contents and with the children in mind, it has been argued by some that this may have been for the best. If you are ill advised to give the Gibson Report to your doctor because of its contents, just imagine how this media story might possibly have played out. Key Statement: Despite promising to "hit the airwaves" with the Gibson Report and a Press Conference to assist in getting the media on side, the undertaking of media relations so vitally necessary to alter public opinion, to encourage biomedical researchers to enter the field, to help patients be treated seriously by their doctors and to assist with the obtaining of the Benefits which so many patients need in order to be able to survive just did not happen. 13. GIBSON INQUIRY REPORT ANALYSIS "What horrifies me is that the Report reinforces the contention that M.E. is a predominantly psychological problem - the one aspect that I fear will overshadow other crucial points raised in the Report - and a serious concern is that those who currently have influence over policy-making (in the NHS, DWP, DoH etc. etc.) will seize on those parts of the report which suit their own agendas." Health Advocate John Sayer writing in ‘’The Gibson Inquiry’ Report – Half Empty or Half Full?’ 30 November 2006. (Appendix 1) “Tackling the inaccuracies of the Gibson Report must be the task of the century”. Health Advocate Lara writing in ‘How to Solve A Problem Like ME/CFS: Why The Gibson Report Has Failed Patients’, 9 December 2006. (Appendix 1) The One Click Group has received an enormous amount of feedback in relation to the Gibson Report. We do not seek to reinvent the wheel as a most excellent line by line critique of the contents has already been done produced by Health Advocate John Sayer. Entitled The ‘Gibson Inquiry’ Report – Half Empty or Half Full? this document is available by live link here and in Appendix 1. We strongly suggest that this be studiously perused at length by all as it is well worth the effort and is highly informative. We seek here to highlight the major concerns with this report that you have forcefully indicated to us. The Gibson Report coming out of this ‘inquiry’ is much distinguished by the fact that: 1. There are no Terms of Reference published within the report. 2. The status of the Group which carried out the ‘inquiry’ (and thus the status of the report itself) has not been defined within the report. It is entirely unofficial. 3. There is no full list of witnesses who presented evidence at the five Oral Hearings with the capacities in which they gave evidence. 4. There is no list of Written Evidence supplied to the ‘inquiry’ committee and no list of those who supplied the documents and other material on which the GSRME Group based its report nor a catalogue of books, publications and reports which the Group consulted in order to inform itself or which were supplied to the Group for the purpose of the ‘inquiry’.

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The foregoing alone arguably makes the Gibson ‘inquiry’ and report unique in the annals of any political endeavour. Far from ensuring "that the voice of the patient is heard", the refracted and twisted kaleidoscope that represents the workings of the Gibson Group that is officially unaccountable to anyone has a great deal to answer for, not much of it good. Whereas the report makes nice but meaningless noises in part, these are merely words on pieces of paper backed by no positive or practical action of any kind. By contrast, some of this report is scientifically and medically illiterate and does huge damage to the prospects of ME/CFS labelled patients, particularly the children. What has emerged from the Gibson 'inquiry' is a dogged and misguided adherence to the concept of 'post-infectious' fatigue, whilst dismissing, without even the token acknowledgement of a reference, the entire evidence base of current and on-going infections with ME/CFS. This is not only negligent behaviour on behalf of Gibson and his Group, it is also life threatening to patients. Even though the 'inquiry' chaired by Gibson is entirely disreputable by the design of its Chairman because of its unofficial status and therefore lack of scientific credibility, it would be academically wrong and insincere not to cover the positive words in the report. 14. GIBSON REPORT POSITIVES We list below the positives detected in the Gibson Report. It is unfortunately the case that the positive words are often either completely watered down, contradicted or completely overwhelmed by the negatives on precisely the same issue, also published in the Gibson Report. The Gibson Group: * Recognises that that the recommendations for further research in the Chief Medical Officer's Working Group Report have been ignored, whilst failing to call for biomedical research into any specific areas. * Is critical in very small part of the CFS/ME NICE Draft Guidelines, whilst failing to submit its own report as evidence for NICE on the online proforma, thus ensuring that the Gibson Report can be safely ignored at NICE's discretion. * Recognises that more biomedical research is needed, but fails to indicate any areas to be addressed, despite the enormous amount of high quality evidence provided for the 'inquiry'. Although stating that more biomedical research is needed in principle, the Group’s report has in no way assisted or even suggested on a practical level, how this is to come about. Furthermore, in the GRSME meeting that took place on the 11 December 2006, it was stated by Gibson that: "The Group discussed information from the CFS (Chronic Fatigue Syndrome) Research Foundation which indicated scientists are very reluctant to get involved in the ME field. It is a very difficult area to make progress in and young scientists are often not keen to pursue it”.

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What the Gibson Group fails to point out is that the *reason* that scientists have been reluctant to enter this field is because of the overwhelming influence of the psychiatric lobby that has already been awarded £11.1m for their endeavours and are about to be awarded a further £180m, courtesy of NICE. It is a brave young researcher that goes against that particular psychiatric steam roller when so much money and power has been given to one side and clearly the academic bread is buttered only with the psychosocial. The Wessely influence has been a career breaker for many, including those psychiatrists who do not concur with Wessely’s views. The Gibson ‘inquiry’ was given the most excellent opportunity with all the evidence and presentations provided to attempt to shift public opinion away from the psychosocial that has dogged the ME/CFS scene for many a long year, due to the extensively bankrolled and government supported psychiatric activities. Instead, the report shows that the Group has not been convinced of the extensive biomedical research presented to it and is still of the opinion that the psychological/physical debate remains confused. On this basis, the Group has actually done nothing practical to encourage biomedical research into ME/CFS. Indeed, when the full meaning of this report has sunk in, it has done precisely the opposite as we will show. * Admits the self-evident fact that requires no announcement that that the UK is falling behind the rest of the world in relation to proper investigation. * Admits the clear historical bias in Britain towards research into the "psychosocial explanations of CFS/ME", whilst giving a resounding vote of confidence to the ‘CFS/ME’ Centres that have been condemned by ME/CFS labelled patients right around the nation and that are run by the psychiatrists for psychiatric benefit in order to shoe horn patients into the scientifically fraudulent PACE and FINE trials on the other. The ‘CFS/ME’ centres and the scientifically fraudulent PACE and FINE are the centrepieces of the government offerings on ME/CFS. * Delineates in very small part the work of Drs Cheney, Hyde, Carruthers et al. It is most unfortunate that Oral Hearing 2 that contained presentations from these excellent doctors was to all intents and purposes held in camera due to Gibson’s deliberate failure to announce that this hearing was taking place. * Reproduces three pages of the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (ME/CFS Canadian Guidelines), the only *clinical* criteria available produced by international consensus incorporating the last fifteen years of medical knowledge on ME/CFS. This positive is contraindicated by the Group steadfastly refusing to state or even recommend that these criteria should be absolutely used to help ME/CFS labelled patients despite these clinical criteria having been produced by expert physicians with experience of treating over 20,000 ME/CFS labelled patients worldwide. * States that the committee would like to see a similar arrangement to the AIDS programme put in place by the Medical Research Council, but attaches no correspondence directed to the Medical Research Council or the Department of Health in any Appendix of the document requesting that this be done with the funds appropriately allocated.

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* States that the World Health Organisation (WHO) holds an internationally recognised neurological classification of ME but fails to advise that since the United Kingdom is signatory to the WHO dicta, this WHO rubric must be used by the UK government and Department of Health throughout. * Commendably advises that the Oxford Criteria are seriously flawed and then, instead of recommending that the ME/CFS Canadian Guidelines be used in their stead, goes on to advise that the Oxford criteria should be updated, presumably by the very same psychiatrists such as Simon Wessely, Peter White, Michael Sharpe, Anthony Clare et al who originally authored them. The Oxford criteria are those being used for entry to the scientifically fraudulent psychiatric PACE and FINE clinical trials. * States the obvious in relation to the difficulties and discrimination that ME/CFS labelled patients often experience with the Department of Work and Pensions (DWP) in attempting to claim benefits, but fails to attach any correspondence directed to the DWP in any Appendix of the document requesting that this issue be immediately addressed. Far from assisting ME/CFS labelled patients properly with the Benefits, the report promulgates extremely damaging misinformation and states: “...patients are not entitled to the higher level of (Disability Living Allowance/DLA) benefit payments”. This is blatantly incorrect. Where appropriate, higher rate care and mobility components of DLA can and should be claimed for by people with moderate or severe ME/CFS and they should not be dissuaded from doing so if they believe they have a good case to put forward, despite Dr Gibson’s best efforts to maintain otherwise. * Weakly highlights the dangers of Graded Exercise Therapy whilst simultaneously announcing that those dangers only apply to the severely affected, whilst recommending this treatment extensively for those who are mildly to moderately affected. This of course begs the question as to the countless thousands upon thousands (especially the ME/CFS labelled children) who have been rendered severely and adversely affected by the forced imposition of GET itself and have ended up severely affected precisely because of these treatments. * States that the Medical Research Council should be more open-minded in its evaluation of proposals for biomedical research, but fails to state what research areas should be considered by the MRC and fails to state that the MRC has been deliberately and flagrantly discriminatory in regard to any proposals for biomedical research into ME/CFS since its inception. * Calls for an amount of spending on biomedical research equal to that already spent on the psychiatrists, but suggests that biomedical research on ME/CFS should be conducted in large part in the ‘CFS/ME’ Centres run by the psychiatrists for psychiatric benefit alone. The Group states that this network of clinics could be used to do biomedical research into the causes of ME/CFS if the right questions were asked by the psychiatrists that run them. This is nonsensical. Key Statement: It is a great pity that the vast majority of the positives contained in the Gibson Report have been completely drowned out by the negatives equally contained therein on precisely the same issues and the lack of practical action propounded by the Group to help patients.

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We list below some of the negatives in the Gibson Report in no particular order of importance. We refer you to John Sayer’s excellent paper entitled The 'Gibson Inquiry' Report - Half Empty or Half Full? for a line by line critique available in Appendix 1. 15.1 ME In Children and Teenagers It is said that how a society and particularly a government treats the young is indicative of its humanity, or lack thereof. On this basis Dr Ian Gibson MP and his colleagues, including and especially the Countess of Mar, Patron of a children's ME/CFS charity and Gibson Group committee member, should be put up against the wall and metaphorically shot. We make no apology for these emotive words. The concerns expressed by patients and carers have left us no choice but to use them. Never in the history of the One Click Campaign have we received such correspondence and telephone calls containing sentiments of pure anger, fury and betrayal from the parents of ME/CFS labelled children as we have over the Gibson 'inquiry' and subsequent report. Some children even contacted us over this issue themselves. It has been heartrending. It is unconscionable with the amount of high quality evidence provided to Gibson and his Group that the report should have included this section on children that we delineate below. In the opening sentence in this section of the Gibson Report, it states in relation to the suffering of ME/CFS labelled children that: "We included this section because it was previously thought that children could not have CFS/ME." The report is therefore stating that the only reason that Gibson and his Group have decided to include any *mention* of the plight of the 40,000 children and young people who suffer from ME/CFS in the United Kingdom is because the Gibson 'inquiry' believes that it was previously thought that ME/CFS did not exist. Up until when was this considered to be the case and by whom? The Group members themselves? The medical profession? The public? Where is the evidence to back up this extraordinary unreferenced statement? The report then continues: "...but the Group accepts that CFS/ME teenagers and possibly in children." is prevalent amongst

Possibly in children? ME/CFS exists only just POSSIBLY in children? This statement in the Gibson Report is simply outrageous. All the difficulties and the harrowing Case Histories of what has been done to ME/CFS labelled children are encapsulated in this statement from the Gibson 'inquiry'. We refer you to the BBC Panorama Programme entitled 'Sick and Tired' that shows very young children labelled with ME/CFS being locked away in psychiatric wards against their will and that of their parents. We refer you to the case of semi-paralysed, ME/CFS labelled young Ean Procter, psychiatrist Simon Wessely's arguably most famous Case History, who was thrown into a swimming pool at the age of eleven without floating aids by the psychiatrists to see if his paralysis was genuine and whether he would sink or swim. The child sank. The harrowing evidence and Case Histories are legion.

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The overwhelming evidence of what has been done to young ME/CFS labelled children for the last twenty years or more has been completely dismissed by Gibson and his 'inquiry'. One young ME/CFS labelled man now age 22 who had been so badly treated by the psychiatrists at the age of seven telephoned the One Click Campaign from the United States in fury after he had read the Gibson Report and its words had sunk in. Having been misdiagnosed with ME/CFS at the age of seven and having now tested positive for Lyme Disease/Borreliosis at the age of twenty, his entire childhood and education had been ruined through medical neglect and the forced psychosocial treatments of CBT/GET that had made him so much worse and damaged him. He was very upset and he did not mince his words: "Gibson and his committee members should quit politics after what they have done in this report," he said. "The thought of any single one of them taking my taxpayer's money and pretending to represent my best political interests makes my stomach churn. It would be exquisite justice for those committee members to have all of their own children tagged with ME/CFS. Let them suffer as we have done and let them find out what it's really like. The section on this report in children is absolutely disgraceful." This was in fact one of the more moderate comments on this issue passed by ME/CFS labelled children and their parents. To add insult to devastating injury, the report continues: "However it is very unlikely to occur in infants and young children and so should not be confused with Munchausen by proxy for example." The report therefore states that ME/CFS in infants and young children does not exist and this thing that does not exist must be Munchausen Syndrome by Proxy. To even mention Munchausen Syndrome by Proxy in a bogus 'government' report that includes copy on ME/CFS children is simply outrageous. To then further suggest that it is a more likely diagnosis than ME/CFS in children is quite simply indefensible. Having read Gibson's report in full, the Mother of an ME/CFS labelled child wrote to us thus: "I am one of Gibson's constituents. If this man stands for re-election, I will do my level best to make sure that people know what he and his group have done to our kids. In Norfolk, we want him out." Having opened the section on ME/CFS in children and young people with the foregoing quoted words from the report, it then goes on to state: "We were concerned to receive written submissions from parents of children with CFS/ME who reported they were disbelieved by social services and community practitioners with the result that their children were put on the at risk register or even made wards of court and removed from the family home." Recognising that this takes place, Gibson et al have done their very level best to ensure that this horror continues apace. These disgraceful statements on MSBP/FII and ME/CFS labelled children not backed by a single academic reference have been placed in the Gibson Report

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despite the fact that Gibson's 'inquiry' has received testimony during the Oral Hearings from the children themselves, from their parents and from the leading Consultant Paediatrician in the field. At Oral Hearing 4 that took place on the 10 July 2006, Consultant Paediatrician Dr Nigel Speight who has dealt with over 500 cases of ME/CFS children presented testimony to the ‘inquiry’ in the form of PowerPoint Slides. Dr Speight’s presentation never made it up on to the 'inquiry's' website, nor is there a summary of his presentation, nor a transcript. The Minutes provided by the ‘inquiry’ of Dr Speight's presentation amount to just one paragraph. To all intents and purposes, what Dr Speight said to this 'inquiry' on ME/CFS children has been deliberately expunged with Gibson maintaining that only children of five years old and upwards might “possibly” get labelled with ME/CFS, with the rest having Munchausen Syndrome by Proxy instead. Dr Speight subsequently went on to say that if the Group had referred back to him he could have confirmed that he has seen it in the under 5 age group and that "disbelief about this had itself left children at risk of being diagnosed as MSBP". He also confirmed that his youngest case of ME/CFS probably had its onset at six months old. Did Gibson have his fingers stuffed in his ears during Dr Speight's presentation? What did this wretched Group do with the evidence? Stuff it in a filing cabinet to rot? Fail to make an evidence list? Fail to circulate it? Indeed, this is precisely what Gibson et al did with it, as we now know. With more and more previously ME/CFS labelled patients now testing positive for Lyme Disease/Borreliosis, the devastating and sometimes fatal spirochaetal bacterial infection, it should be noted that some of these patients contracted Lyme Disease/Borreliosis in utero. B. burgdorferi/borrelia can cross the placenta and infect the foetus. In addition, breast milk from infected mothers has been shown to harbour spirochetes that can be detected by PCR and grown in culture. This means that many children will have been suffering from this illness since birth. We quote health advocate Suzy Chapman over this issue who writes thus: “According to the Gibson Group: A child under 5 cannot be diagnosed with ME [thus leaving the family open to risk of false accusation of MSBP (FII)]. A child over 5 cannot be diagnosed with MSBP (FII) [since Dr Gibson claims that MSBP does not exist in children over 5]. Ipso facto, according to the Gibson Group, it should not be possible to confuse the two. This is Mickey Mouse science. Dr Gibson's approach to the children's section does not stand up to scrutiny. It lacks scientific rigour. Our ME children deserve and have a right to expect a better standard of "science" from this "Group on Scientific Research into Myalgic Encephalomyelitis". If Dr Gibson wanted to quote meaningful statistics in relation to ME and accusations of MSBP (FII) in ME families he could have enquired into percentages for families with ME children and teenagers who

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have been suspected of, or given a diagnosis of MSBP (FII) compared with overall perceived prevalence rates. Instead, he has sought to legitimise the diagnosis of the by no means certain construct of MSBP (FII) in families, made very dodgy and potentially damaging claims and some highly illogical deductions, all of which he fails to back up with references.” For Gibson et al to maintain in this disgraceful section of the 'inquiry' report that babies and children under five suffering from the clinical features of ME/CFS that are indistinguishable from Lyme Disease/Borreliosis that can be contracted in the womb (See ME/CFS Canadian Guidelines/ILADS Guidelines Symptoms Comparison Chart) are in fact quite possibly suffering from Munchausen Syndrome By Proxy with the concomitant forcible removal of these children from their homes that so often occurs, is one of the greatest scandals to hit the ME/CFS community in its history. The psychiatric lobby knows full well that the area in which they are weakest and most open to litigation is for the horrors that they have perpetrated on ME/CFS labelled children - minors with no voice. This is a Human Rights issue that Gibson and his colleagues have done their very best to bury with the report coming out of this bogus 'inquiry'. To think that those politicians who created that report are actually paid for by us in one way or another is a most shocking spectacle. Although we created the public platform enjoyed by Dr Ian Gibson MP by paying for his professional existence, none of us could have predicted what Gibson had in store for the children. To add further affront to what has been done to the ME/CFS labelled children in the Gibson Report, it has been noted that Gibson Group committee member Dr Richard Taylor MP is also a member of the Cross-Party Group of MPs that is calling for investigation into the high incidence of false accusations of MSBP/FII. On October 2006 and in his capacity as a member of this group's committee, Taylor launched a nationwide campaign calling for the withdrawal of the United Kingdom guidelines on MSBP/FII. One Click the MSBP/FII Survey that includes the covering letter from Taylor at the House of Commons. Taylor’s membership of the Cross-Party Group on MSBP/FII makes his subsequent support of the construct of MSBP/FII in young children as he has with his endorsement of the Gibson Report that by implication will lead to many of these children being forcibly removed from their homes, atrocious. He does this whilst conversely campaigning for this injustice to be corrected via the Cross-Party Group of MPs to which he belongs. This shows either complete confusion or deliberate malfeasance on the part of this MP. How could he have done this to the children, knowing what he knows? What these politicians have done to ME/CFS labelled children in this report is an utter disgrace, will blot the political escutcheons of all those involved for the rest of their lives and will haunt them at every turn. We shall make sure of it. Democracy and free speech is a wonderful thing. 15.2 The 'CFS/ME' Centres The key material that reveals the entire basis of what the Gibson 'inquiry' is all about and what it has been deliberately structured to deliver by those pulling the strings behind the scenes is the section in the report that deals with the 'CFS/ME'

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Centres. These are the clinics that have been condemned by patients right around the nation by RiME, Campaigning for Research into Myalgic Encephalomyelitis and others, that are being run almost exclusively by the psychiatrists for psychiatric benefit and have been set up to shoe horn patients into the scientifically fraudulent PACE and FINE trials. Over £11.1m of British taxpayer's money has been wasted on this endeavour so far, with a further recommended £180m to be spent on this exercise by the National Institute for Health and Clinical Excellence (NICE). These psychiatric clinics are the absolute centrepiece and lynchpin of government and psychiatric policy on ME/CFS. To leave them standing without substantial criticism means acceptance of the whole of the psychiatric lobby and government’s carefully constructed and flawed edifice on ME/CFS. Instead of any criticism of these 'CFS/ME' Centres, the report states: "The Group is extremely pleased with the advent of these centres and we hope they will be maintained and indeed rolled out." It then goes on to say: "The existing treatment centres would be ideal places to undertake or initiate large scale epidemiological research studies of the type the Group feel are vital in this field." To suggest that the group of psychiatrists running these 'CFS/ME' Centres would even begin to entertain the prospect of seriously and properly conducting biomedical studies on ME/CFS that deal with the transmission and control of disease is entirely ludicrous. Firstly, these psychiatrists are not qualified to carry out such studies. Secondly, for them to in any way begin to compromise their multi million pound psychiatric lobby income stream by becoming involved with biomedical investigations and biomedical studies into ME/CFS is risible. It is in the psychiatric lobby’s best interests to ensure that biomedical evidence never reaches the light of day, just as they have attempted to suppress said evidence for the last twenty years or more. From this entirely damning section of the report we see precisely the enormous psychiatric lobby endorsement provided by Gibson et al. 15.3 Illness Severity - ME/CFS One of the many negatives dotted throughout the Gibson Report is the damaging sentiments displayed by committee members in relation to those moderately and mildly affected by ME/CFS. The report states: "At present, the only treatments are symptomatic and psychosocial. For the extremely affected sufferer this is not satisfactory." It would seem that despite the copious amount of high class evidence provided to Gibson's Group, the neurological illness suffered by mildly to moderately affected ME/CFS labelled patients has been completely downgraded to that easily dealt with by the psychosocial treatments of Cognitive Behavioural Therapy/Graded Exercise Therapy (CBT/GET). Since many of the initially mildly to moderately affected ME/CFS labelled sufferers have been confined to wheelchairs for years and some for life, precisely as a result of these CBT/GET treatments applied by the psychiatric lobby, this is quite frankly an outrage. It clearly shows that

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Gibson's Group has quite simply failed to read and absorb the copious amount of first class evidence provided and take it on board. 15.4 Cognitive Behavioural Therapy/Graded Exercise Therapy (CBT/GET) The psychosocial treatments of CBT/GET are the mainstay on which the psychiatric lobby has based its multi-million pound industry being delivered at these ‘CFS/ME’ Centres, consistently criticised and detested by patients. It is scientifically illiterate for the Gibson Group to in part endorse these treatments in the way that it has. It is as if all the thousands upon thousands of biomedical papers on ME/CFS, many of which were proffered as evidence to the Gibson Group, have simply evaporated and failed to be taken into account. One particular item of concern is that this ‘government’ report is now touting CBT as an effective biological treatment for ME/CFS. We quote from the report: "The most effective psychological therapy, which has been shown as such in controlled clinical trials, is Cognitive Behaviour Therapy (CBT). This treatment has shown to be effective in patients with many long term illnesses for example cancer. Prof Trudie Chandler (sic) presented to the group on this treatment. Prof Chandler’s (sic) results were impressive. This treatment certainly has a role to play in treating CFS/ME." "... in CFS/ME this [CBT], and GET are the only available treatments which have been shown to be effective in several controlled trials." "CBT is most effective in those with less severe forms of CFS/ME...” "The psychosocial treatments above are useful for many illnesses and situations and have not been found to be harmful to patients with CFS/ME." Clearly, the Group has failed to take into account the survey carried out by the 25% ME Group charity that states that “Over 90% found the two most recommended treatments, cognitive behaviour therapy & graded exercise unhelpful. A shocking 82% reported their condition made worse by GET.” The Countess of Mar who sits on the Gibson Group committee is a patron of this charity. Despite the Gibson Group acknowledgement that GET is an area of concern, nonetheless, the report is at pains to point out that: "The evidence given to the Group by Dr Peter White found that in four studies 50-70% of patients improved with GET. However, Dr White also states that “GET (and CBT) have been shown to be efficacious only in small trials. They have never been compared to specialist medical care or pacing. We do not know the best treatment; for whom; nor how they work.” Although the Group acknowledges that CBT/GET has only been shown to be efficacious in small trials, it nonetheless accepts these psychiatric studies and endorses and recommends CBT/GET, particularly for those that it claims are only mildly to moderately affected.

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In the case of the biomedical evidence however, and despite the submissions and presentations made to the ‘inquiry’ by many of the experts in the field, the Group recommends that all the biomedical evidence needs to be confirmed or refuted by others and that another inquiry should take place to confirm or refute its validity. Whereas the psychiatric material has been accepted by the Group, acceptance of the biomedical evidence has to be further delayed whilst yet another inquiry is set up. This will deliberately postpone biomedical evidence acceptance by the government for many years. This is yet one more example of the psychosocial bias of this report and leads enormous weight to the concept that Gibson’s Group, as shown, has failed to properly deal with the evidence put before it. Whilst admitting that the Group does not know what the best treatments are, nor how they work, it nonetheless sanctions the estimated total of £191.1m that is to be spent in the 'CFS/ME' Centres that it so roundly endorses. 15.5 Psychiatric Colonising of Biomedical Research With more and more information coming out in the public domain over the biomedical basis of ME/CFS, the psychiatric lobby - ever one with a finger on the financial pulse - recognises that their income stream and professional reputations are now under serious threat, hence the attempt to colonise biomedical research into ME/CFS. The Gibson Report, noting that that Professor Trudie Chalder (so heavily involved in the psychiatric treatment of ME/CFS labelled children) is suggesting that CBT "has a biological effect on the body", then proceeds to state: "The Group would like to see further research into what this effect is as it may open avenues of investigation into biomedical causes." Even though such mind-over-matter-think-yourself-ill-or-well claims are full of absurdities, they have now been given legitimacy by an unofficial ‘government’ 'inquiry' report, no less. We predict that this risible and unsubstantiated psychiatric claim will be used by the Medical Research Council to fund CBT research projects in the future, where possible (not inevitable), minor changes in brain chemical physiology related to cognitive acts will be touted as proof of mind over matter beliefs and efficacy. Thanks to the Gibson Report, endorsement of a project that credible scientists consider to be expensive mumbo jumbo will doubtless be swiftly financially greased by the Medical Research Council et al. In fact and extremely damningly, this particular field appears to be the only specifically targeted desirable research project by Gibson et al. The vagueness of the call for 'physical' research in the rest of this report allows the psychiatric lobby to move in and colonise any UK research, wasting goodness knows how much money desperately trying to gain legitimacy for their own belief systems that have done so much damage to patients. 15.6 The ME/CFS Criteria Despite publishing three pages of the ME/CFS Canadian Guidelines, as pointed out in the positives section of this document, the Group fails to recommend that they be absolutely used. Instead, it actively recommends that the highly flawed Oxford criteria be redrafted and updated instead by the very psychiatrists who created them. The Group then goes on to strongly recommend the CDC CFS Toolkit produced in the United States and comments: "The CDC provides very patient focused criteria. It highlights the importance of recognising the condition and the serious nature of the

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condition in order to validate the patient’s experience of the illness. It then advocates working with the patient and being flexible with treatment to see what works for the individual via tailoring a “multidimensional treatment program”. It is an extremely useful resource for anyone involved in the clinical treatment of CFS/ME." The most basic perusal of the CDC Toolkit that the Group so heavily endorses shows that it is entirely CBT/GET focussed. The inescapable conclusion from perusal of this report is that Gibson and his Group have bent over backwards to endorse the psychosocial approach in relation to ME/CFS until the cracking of spines is audible right around the nation. 15.7 The PACE and FINE Trials Despite Gibson having elected to call his phantom 'inquiry' the Group on Scientific Research into ME and despite the fact that the Terms of Reference of this Group have been to "evaluate progress in the development of a full programme of research into ME/CFS", nowhere does Gibson's phantom ‘inquiry’ deal effectively with the scientifically fraudulent PACE and FINE trials except to say that both of these trials “are to be welcomed". Quite how any 'inquiry', even of the most disreputable and unofficial kind as that set up by Dr Ian Gibson MP, has been actively prepared to turn a blind eye over trials that are wasting in total to date over £11.1m of British taxpayer's money is extraordinary. Is it not the case that this Group is supposed to be "evaluating" research progress? We refer Gibson and his colleagues to The One Click Group Presentation made to this 'inquiry' on Tuesday 18 April 2006: "Professor Simon Wessely stated in public at the Eliot Slater Memorial Lecture: “There is a phenomenon known as myalgic encephalomyelitis - or ME. I will argue that ME is simply a belief - a belief that one has ME,” he said. From the scientifically unproven belief system of this psychiatrist and the group that surrounds him, over £11.1m of British taxpayers money has flowed to set up the methodologically and ethically flawed psychosocial PACE and FINE trials being conducted at these ‘CFS/ME’ Centres primarily run by the psychiatrists for psychiatric benefit. These are the ‘CFS/ME’ Centres that have been thoroughly condemned by ME/CFS patients’ right around the United Kingdom as has been evidenced, as just one example, by the many letters from patients sent to RiME – the group for Research into Myalgic Encephalomyelitis. What was the purpose of setting up the Chief Medical Officer’s Working Group, preparing a complex report, taking into account at least some of the patients’ views and then to all intents and purposes, ignoring them completely? Psychiatric interventions over ME/CFS have been forced on patients for the last fifteen years or more and are STILL the only treatments consistently available. If these had been in any way efficacious, where are the lost legions of the recovered to show this? Just where are they?

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The enormous irony and scientific fraudulence of the PACE trial is the way that it has been deliberately structured using the outdated and superseded Oxford criteria for patient inclusion into this trial purely to enhance the numbers recruited and to include patients suffering from Idiopathic Chronic Fatigue, a mental disorder classified as such under F48 that is entirely different from ME/CFS. The Oxford criteria specifically EXCLUDE patients suffering from a neurological disorder that ME/CFS IS as defined by many international experts and the World Health Organisation. How has it come about that millions of pounds of British taxpayers’ money, agreed by the Medical Research Council, are being spent on a trial that is actually excluding the very patient population that it is supposed to be studying by use of the Oxford criteria for entry to the PACE trial? ME/CFS must be the only illness in the world where the most severe sufferers are never properly studied. There is also massive controversy surrounding the bolt on inclusion of the Fukuda and London criteria in the PACE trial. The so called London criteria have never been peer reviewed, published, operationalised or validated. This makes these criteria unusable in any clinical trial and that, together with the use of the aforementioned Oxford criteria, makes the structure of the PACE trial a scientific nonsense from the outset. Furthermore, the charity Action for ME, that has no mandate or remit to act for ME/CFS patients at government level or any other since it has not held an Annual General Meeting that involved its members/subscribers for the last TEN YEARS is heavily involved in the PACE Trial protocol and has been given money by Section 64 government grant to promote this trial to their members. It clearly states in the PACE Trial Identifier produced by the psychiatrists for the Medical Research Council that: “Compliance with both the treatments and the study will be maximized by the COLLABORATION and SUPPORT of AfME.” The PACE trial, as delineated in The PACE Report produced by One Click, is a deceit and scandal of massive proportions as has indeed been written up in the Independent national newspaper in 2004. The PACE and FINE trials are clearly little more than job providers for the psychiatrists that are running them who operate on the basis of a misguided but entrenched illness belief system for which there is absolutely no scientific basis, that ME/CFS is a mental disorder, not the neurological illness that it is, as defined by the World Health Organisation. Is it ethical for people with proven commercial interests in these studies to be designing and running these trials, give the proven evidence of their personal commercial interests in the desired outcome of these trials? " Rather than deal with a most controversial issue that has cost the British taxpayer a multi-million pound fortune, Gibson and his colleagues fail to make any remark over these research trials except that of an overtly complimentary nature. Once again, the Gibson 'inquiry' does its very level best to support the psychiatric lobby and its psychosocial work. It is unconscionable that a Group who has styled itself as focussing entirely on research has failed to deal with this key issue.

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15.8 Simon Wessely How Gibson and his Group elected to deal with the issue of Professor Simon Wessely, leader of the psychiatric lobby that has done such consummate damage to ME/CFS labelled patients, illustrates the entire farce of this 'inquiry'. Gibson's Group proceeds to endorse the concept of psychiatrist Simon Wessely as the "leading expert on treating CFS/ME and the CFS/ME treatment centres set up by the NHS that have been to his model." Remember, Gibson and his Group have already thoroughly supported Wessely's centres in the report and stated that: "The Group is extremely pleased with the advent of these centres and we hope they will be maintained and indeed rolled out", these centres being the lynchpin of government policy on ME/CFS. The report goes on to state: "Wessely gave up the research side of his work possibly due to extreme harassment he received from a very small fringe section of the ME community." In so far as we are aware, it should firstly be noted that far from giving up the research side of his work, Wessely is so heavily involved in the scientifically fraudulent PACE trial that he is the director of its database design and management. See The PACE Report that includes the PACE Trial Identifier, the document written by the psychiatric lobby to obtain funds from the Medical Research Council. Let us now turn to examine this Wessely "harassment" claim propounded by Gibson et al and now set in stone in this opinion piece report penned by these politicians. It is ludicrous that any 'inquiry' - unofficial or otherwise - has apparently accepted such serious yet nebulous allegations at face value. We would remind our readers of what was done to Jane Bryant and Angela Kennedy of The One Click Group in April 2005 simply because they had the guts and the courage to publish the cast iron evidenced malfeasance of the ME/CFS charities (particularly MERGE now trading as ME Research UK) in their collusion with the psychiatric lobby over the development of the RCPCH Guidelines on ME/CFS children that have subsequently served to damage the health prospects and entire well being of every single ME/CFS labelled child in the land. With four police officers barrelling through Bryant's front door one early morning, performing false arrest, attempting to drag her sick young naked child out of the bathroom and threatening to put her child into care unless she handed over her computer, one may rest assured that if Wessely, a consultant to the Ministry of Defence, had been at the sharp end of any kind of harassment, the police would have been all over this like a rash. If Wessely has been subjected to "extreme harassment" as he so consistently claims, why have the police not been asked to intervene and why has Wessely not published what was done to him and the actions taken by the authorities to deal with this matter? If Simon Wessely has been harassed, he should be made to back up these claims with the evidence. Since Wessely regularly speaks in public at the drop of a well paid hat, for Gibson et al to then claim that they "were disappointed not to have the opportunity to discuss this important issue with such a key figure" inferring that Wessely's "harassment" claims were of such serious import that they prevented his attending this 'inquiry', is blatantly absurd.

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Far more likely is the case that Wessely did not want to actually confront the patients that he has so severely damaged with his psychosocial treatments that have no basis in credible science in this ‘inquiry’ that he could not face attending. That Gibson allowed him to get away with this and moreover pronounced him as the leading expert in the CFS/ME field whilst insisting that Wessely's ‘CFS/ME’ Centres be maintained and rolled out is entirely damning. Gibson et al maintain in the report that Wessely "did not submit a written piece to the Inquiry", but a letter instead. This is contradicted by Gibson Group report launch mouthpiece Kate Stewart (operating under the pseudonym of Margaret Williams) who on 19 July 2006 and in her article entitled A Farewell Message for Professor Wessely? stated: "At the fifth oral evidence session of the Gibson Parliamentary Inquiry held on 18th July 2006, the Chairman, Dr Ian Gibson, revealed that Professor Simon Wessely had submitted about 20 pages of "evidence" but would not attend because 'he'd had enough of ME'." Whether the twenty pages submitted by Wessely to Gibson were in a letter or a document is irrelevant. What is blatantly obvious is that far from his initial promise "to get to the bottom of things" with ME/CFS, Gibson et al have pulled every trick in the book to absolutely ensure that Wessely, the primary architect of the overt psychosocial bias and stigma levied at all ME/CFS labelled patients in Britain, has been let off the hook and praised as the leading expert in the field instead. 15.9 Vaccinations Bearing in mind the evidenced links between selected members of the Gibson Group and the pharmaceutical industry, particularly Gibson himself, it is in no way surprising that Gibson et al skirt the vaccinations issue like the unexploded live time bomb that it is and state: "The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause." Really? What the Group fails to mention and as was made absolutely plain during the presentation carried out by Dr Bruce Carruthers, presenter of evidence to the Invest in ME charity conference in May 2006 at which Gibson was present, is that vaccinations can act as a trigger to ME/CFS. We do not know if Dr Carruthers presented similar material to Gibson's phantom 'inquiry' because no presentation slides have published on the 'inquiry's' website and there are no details that have been made publicly available. This presentation was to all intents and purposes held in camera because details of when it was to take place and where were not announced. Gibson and his Group have clearly elected to sweep the vaccinations issue over which there has been so much concern, not just in ME/CFS but with numerous other illnesses as well, swiftly under the carpet. 15.10 ME/CFS - The Wastepaper Basket Diagnosis Because there is no accepted laboratory test available for ME/CFS, it has become the wastepaper basket, catch-all diagnosis. ME/CFS misdiagnosis is being carried out on a massive scale in the UK and around the world because it is an easy box to tick and a simple label to append.

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With the vast majority of ME/CFS labelled patients, all in-depth tests investigations are denied and the Gibson Report has done its unofficial disreputable best to ensure that this situation continues by to all intents purposes ignoring this issue completely. Some patients will die as a result many suffer horribly and needlessly.

and and and and

Gibson et al have failed make clear that the majority of symptoms linked with ME/CFS are also present in many other very serious and often fatal conditions and that people demonstrating these symptoms are not being investigated. As but a few examples, we list below the conditions that patients who have been labelled with ME/CFS have subsequently been shown to be suffering from and many of whom have died: Addison's disease Anaemia Cancer Chronic Hepatitis Coeliac disease Diabetes Mellitus Diastolic Filling Dysfunction Guillam-Barre, Lyme Borreliosis Malignancy Multiple Sclerosis Myasthenia Gravis Parkinson's disease (Including early onset/young onset) Parvovirus Infection, Polymyalgia Rheumatica Rare myopathies Sarcoidosis Sjögren's syndrome Sleep Apnoea Syndrome Stroke Systemic Lupus Erythematosus variantCreutzfeldt Jakob Disease (vCJD/Mad Cow) By the emerging evidence of chronic microbial infections being present in many people labelled with ME/CFS being ignored, patients diagnosed with ME/CFS and who have these infections are being placed at serious risk of being deprived treatment that might prevent the deterioration of their condition into serious illness, severe disability and on far too many occasions, death. Gibson and his colleagues were given the golden opportunity to recommend that all patients about to be labelled with the wastepaper basket diagnosis of ME/CFS should undergo viral and bacterial testing. Instead, the entire evidence-base of current and ongoing infections in ME/CFS has been discarded in this report. 15.11 Lyme Disease/Borreliosis We reproduce in full the section on Lyme Disease/Borreliosis in the Gibson Report: "A lot has been made of the link between CFS/ME and Lyme’s disease or Lyme Borreliosis. The group heard from many patients who were convinced they had it, some who had tested positive and found

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treatments and others who thought Lyme Borreliosis had no link to CFs/ME. Following discussions with the Health Protection Agency the Group concluded that Lyme Borreliosis is a potentially serious illness and was concerned to discover that is in on the increase in the UK. However, while those with Lyme Borreliosis exhibit many similar symptoms to CFS/ME the Group believes they are two separate afflictions. " What precisely does “a lot has been made” mean? In light of further statements made on this subject from worldwide experts, this would appear to be a very trivialising statement to make in the face of strong clinical evidence demonstrating the relevance of the Lyme Disease/Borreliosis issue to ME/CFS. The views of Gibson et al in relation to Lyme Disease/Borreliosis and its possible involvement in those diagnosed as having ME/CFS would appear to be ambiguous in meaning, simplistic in argument and dangerously short sighted in consideration. To maintain that Lyme Disease/Borreliosis and ME/CFS are two separate afflictions is to state the blindingly obvious. Lyme Disease/Borreliosis is a bacterial infection of known cause and sometimes resistant to so-called 'adequate antibiotic therapy', whilst ME/CFS is currently a medical mystery, colonised by psychiatry. Until the medical establishment can lay claim to knowing a definitive cause/causes and/or triggers for ME/CFS, with associated physical-testing procedures to verify the diagnosis, the involvement of Borreliosis or any other number of tick-borne infections cannot be ruled out. Lyme Disease, in the true sense of an illness, is an American infection causing predominantly rheumatological symptoms. In the UK and Europe, Borreliosis is more likely to be to blame, causing a vast array of neurological symptoms. Accurate testing and diagnosis of Lyme Disease/Borreliosis has remained a problem for many years for several reasons. Currently, testing for Lyme Disease/Borreliosis is carried out in the UK by the Health Protection Agency Lyme Disease Specialist Reference Unit (HPA), as referred to in the Gibson Report. It consists of a ‘two-tier’ blood-testing procedure, the highly unreliable ELISA (Enzyme Linked Immuno Sera Assays) used as a screening test and the second known as a Western Blot which was initially designed for the epidemiological study of Borrelia. It was never intended to be used as diagnostic of an individual patient’s condition. Without a positive ELISA test, a Western blot test will generally not be performed. Neither test is 100% reliable, nor can conclusively rule out the role of a current and active Borrelia infection. Because of this highly flawed testing procedure in the UK, countless numbers have been given false negative results, have slipped through the net and have gone undiagnosed and untreated, suffering terribly. We reproduce here a comparison chart of the ME/CFS Canadian Guidelines (CG) symptoms of ME/CFS with those of the International Lyme And Associated Diseases Society Guidelines (ILADS) symptoms of Lyme Disease/Borreliosis. The authors of the ILADS Guidelines state: “The clinical features of chronic Lyme disease can be indistinguishable from fibromyalgia and chronic fatigue syndrome. These illnesses must be closely scrutinized for the possibility of etiological B. burgdorferi infection.”

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ME/CFS (CG) Physical and mental fatigue, post exertional fatigue/pain Unrefreshing Sleep Pain (muscles, joints, migratory, shooting, burning, aching), 75% meet criteria for Fibromyalgia Syndrome (FMS) Temporomandibular Jaw (TMJ) dysfunction Headaches Muscle Weakness and Fasciculation Intracranial abnormalities

Lyme Borreliosis (IG) Fatigue Sleep Disturbance Myalgia, Back Pain, Jaw Pain, testicular/pelvic pain, stiff neck. Migrating arthralgias, stiffness and, less commonly, frank arthritis, Headaches Muscle twitching Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis) Low grade fevers, hot flashes or chills, night sweats, Sore Throat/ Swollen Glands Chest pain and palpitations, lightheadedness, dizziness, vertigo, cardiac symptoms Blurred Vision & Eye Pain Poor Concentration and Memory Loss, Cognitive dysfunction Tinnitus, photosensitivity Irritability and mood swings, depression Abdominal pain/nausea * Paresthesia** Diarrhoea, urinary frequency**

Low Body Temp, Sweats, chills, cold extremities, intolerance to hot/cold Sore Throat/Flu symptoms/ Tender Lymph Nodes Orthostatic Intolerance (NMH/POTS), palpitations, cardiac arrhythmias, dizziness, vertigo, extreme pallor Visual impairments Memory Impairment, Difficulty with information processing Sensitivity to Light & Noise Emotional overload/anxiety Marked weight change, anorexia, loss of appetite Multiple Chemical Sensitivity (MCS) Sensory/Perceptual Disturbance Urinary Frequency & Bladder Dysfunction, IBS

(Source: How To Solve A Problem Like ME/CFS: Why The Gibson Report Has Failed Patients by Lara, December 2006, available in full in Appendix 1). Since only the most basic tests are routinely performed on patients about to be given the wastepaper basket diagnosis ME/CFS label, it is obvious that these two conditions will be confused in many, many cases since the symptoms of both illnesses appear identical. Paralysis and death will sometimes result. Before being diagnosed as having ME/CFS, not only must patients endure their symptoms for a minimum of six months, but all possible infectious agents that may be the cause of that patient’s ill-health must be conclusively ruled out. As we know, the in-depth tests and investigations necessary for ME/CFS labelled patients are almost never carried out. As with ME/CFS, Lyme Disease/Borreliosis and other tick-borne infections do not receive sufficient and appropriate research undertaken by the very organisations charged with defending the population from them. Despite a continued increase in the number of cases of Lyme Disease/Borreliosis each year, it has been over seven years since the government has undertaken any research into this debilitating disease.

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“Following the completion of eight research projects investigating aspects of Lyme disease, the latest being in 1999, the Department is not currently undertaking research into Lyme disease.” (Hansard : 15 Dec 2004 : Column 1154W) In England and Wales infection rates have doubled within the last five years, and tripled in Scotland over the same time period. Data collected by the Communicable Disease Surveillance Centre (CDSC), when read in conjunction with information produced by the Eurosurvelliance group, indicates that overall there has been an eighteen-fold increase in infection rates in England and Wales between 1986 and 2005. These figures are representative of a voluntary monitoring scheme in place throughout England and Wales and would doubtless be higher if, as it is in Scotland, Borreliosis was a notifiable condition. There is a wealth of medical studies and scientific information available on tickborne disease from countries around the world, yet the UK's medical establishment remains ignorant of many of those facts, which leaves many patients without satisfactory resolution to their condition. Recent information published by Dr Darrell Ho-Yen, a self-styled Lyme Disease/Borreliosis government ‘expert’ and the income generator purveyor of self-help books that he never ceases to publicise, indicates that even with a less than optimum 'scoring system', 5% of his patients diagnosed as having ME were found to be infected with Borreliosis. With the number of ME/CFS labelled patients in Britain estimated as 240,000, this represents many thousands being misdiagnosed. Sadly, in the UK, doctors who are experienced in these complicated diseases are few and far between and as such, there is the strong likelihood, if not inevitability, that a patient suffering from chronic neuroborreliosis, or some other bacterial/viral infections, would be misdiagnosed as having ME/CFS, or Post Lyme Syndrome (PLS). Differentiating treatment failure from "post-Lyme syndrome" is difficult because they have both been poorly defined. However, it is generally agreed that a true treatment failure means ongoing infection, that is, the presence of live B burgdorferi. By contrast, "post-Lyme syndrome" consists of residual symptoms, apparently arising via immunologic mechanisms, which are triggered by the initial infection, which last for several months after therapy without evidence of spirochaetes being present. How can evidence of true continued infection be determined if testing is substandard and is not advised in the case of ME/CFS patients? In addition, it is recognised that re-infection can occur following an additional tick-bite, therefore how can re-infection be ruled out without testing for it? According to the HPA: 'A small percentage of patients may continue to have subjective symptoms after appropriate treatment, similar to chronic fatigue syndrome or fibromyalgia. ' According to countless ME/CFS and fibromyalgia patients from around the world, their subjective symptoms were improved, or ceased entirely, following effective medical treatment for tick-borne infection, along with any number of other bacterial, viral, protozoal infections.

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To say that patients currently diagnosed as having ME/CFS should not be tested for Lyme Borreliosis, as per the current proposed NICE guidelines, is medical denial and ignorance of the worst order and goes directly against the ethos that other infections should be excluded when diagnosing ME/CFS. It is the case that the UK ME/CFS charities that work in this field are desperately trying to debunk the evidenced links between Lyme Disease/Borreliosis and ME/CFS because these links entirely wreck their credibility and put them out of business. This is a key issue that one should always take into account in all dealings with ME/CFS charities. For the Gibson Report to fail to accurately and properly deal with the evidenced links between ME/CFS and Lyme Disease/Borreliosis - the fastest spreading zoonotic infection in the world today – and the research issues that so clearly need to be addressed in this area is tantamount to criminal negligence. There are many further sections of the Gibson Report that we could most effectively critique, but this would make this document of even greater length than it already is. We will therefore content ourselves with providing you with the excellent documents provided in Appendix 1 that highlight the many issues of concern so clearly. Key Statement: The calls for biomedical research in the Gibson Report are to be much welcomed. However, the fact that these are backed by absolutely no positive and meaningful action of any kind save for the calling of yet a further inquiry to review the biomedical evidence means that they are not worth the paper that they have been printed on. It is clear that Gibson et al are trying to drag the ME issue into the corrupt world of medical research science, where it will again be joined by its dead bride Wesselyite psychological testing. 16. CONCLUSION Dr Ian Gibson MP has personally stated that the objective of his ‘inquiry’ was to open up a dialogue. If Gibson and his colleagues had troubled themselves to absorb even one tenth of the evidence submitted, they would have recognised that ME/CFS patients have been drowning in endless “dialogue” and little else in relation to the biomedical basis of ME/CFS for the last twenty years or more. This has occurred whilst the UK government exclusively financially bankrolls and endorses the work of the psychiatric lobby to the current tune of £191m and counting. The positive action and the taking of the biomedical evidence on board has simply not occurred with the Gibson ‘inquiry’ and, it would seem, deliberately so. All that patients have to look forward to is yet another ‘inquiry’ that will most likely take years to arrange, if it occurs at all. Meanwhile, with the all in-depth tests and investigations denied, people will suffer horribly and some will die. As previously stated, the Gibson ‘inquiry’ and its report would appear to have been designed to create meaningless white noise to attempt to pacify the ME/CFS community and keep them quiet, whilst maintaining the psychiatric lobby multimillion pound sterling steamroller firmly in business. As an inevitable consequence of the Gibson Report to which social workers will doubtless latch on with a high degree of glee, vulnerable babies and children will have their ME/CFS symptoms dismissed as Munchausen Syndrome By Proxy/ Fabricated or Induced Illness (MSBP/FII), some will be forcibly removed from

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their homes and their families subjected to the utterly secretive proceedings of the family courts. Their lives will be destroyed. For Gibson to maintain that the voice of the patient has been heard and that he is acting as our spokesperson is quite possibly the most disgraceful and outrageous fallacy that has ever been witnessed by anyone, anywhere in the world. We leave you with a quote from the Dexhaven paper entitled ‘Initial Thoughts – Gibson Inquiry’, 27 November 2006, that states: “The report, and the conclusions of this inquiry, show that there is little hope of the current situation being taken seriously. This report further demonstrates the attitude of government process towards people with M.E. - they just don't care. There are many possible reasons why this inquiry has failed, and I'm sure many conspiracy theories abound. However, whatever the reasons for this failure, and whatever the motivations of the group to fail in their tasks, one fact still remains: People with certain medical symptoms are neglected by the government, and the NHS. This is human rights issue, and it will be acknowledged. Despite the efforts of the M.E. Community to provide the inquiry with information they can act upon, they have joined the ranks of the people who are determined to ensure the ongoing suffering for those labelled with CFS/ME.”

The One Click Group Report The Gibson ‘Inquiry’
17 January 2007

REFERENCES:
The 25% ME Group, Press Release, Faces The Facts & Figures Them Out, CBT/GET and Pacing, 10 May 2006. Available on the One Click website:
http://www.theoneclickgroup.co.uk/documents/MECFS_char/25%25/25%20percent%20Group%20Press%20Release.doc

25% ME Group for the Severely Affected, Williams M/Stewart K, Some Concerns about the National Institute for Health & Clinical Excellence (NICE) Draft Guideline issued on 29th September 2006 on Diagnosis and Management of Chronic Fatigue Syndrome /Myalgic Encephalomyelitis in Adults and Children, (Formal Response to NICE) 19 October 2006. Available on the One Click website:
http://www.theoneclickgroup.co.uk/documents/NICE/NICE%20Concerns%20from%20Kate %20Stewart.pdf

BADA-UK Statement, (Borreliosis & Associated Diseases Awareness, Registered Charity 1113329 www.bada-uk.org), 10 October 2006. Available on the One Click website:
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Bryant, J. The AfME Dossier (2004). Available on the One Click website:
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Bryant, J., The PACE Report (2004). Available on the One Click website: http://www.theoneclickgroup.co.uk/documents/PACE/THE%20PACE%20REPORT.d oc

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Bryant, J., ‘A Review - the ME/CFS Canadian Guidelines’ (2005). Available on the One Click website:
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Bryant, J. ‘Child Abuse Specialist Runs ‘CFS/ME’ Centre’ (2005). Available on the One Click website:
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Bryant J., The One Click Group Evidence Submission, Gibson Inquiry Structure information request and Evidence receipt request, 9 December 2005. Available on The One Click Group website:
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Bryant J., Letter to Andrew Slaughter MP, Gibson Inquiry, 9 January 2006. Available on The One Click Group website:
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Bryant J., Letter to Dr Ian Gibson MP, Gibson Inquiry Structure information request, Evidence receipt request, 9 January 2006. Available on The One Click Group website at:
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Bryant J., The One Click Group Evidence Submission, Gibson Inquiry Structure information request and Evidence receipt request, 3 March 2006. Available on The One Click Group website:
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Bryant J., The Gibson ME/CFS Inquiry Exposed, international distribution. 30 March 2006. Available on The One Click Group website:
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Bryant J., The One Click Group Response - NICE Guidelines, 16 November 2006. Available on The One Click Group website:
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Burrascano Joseph J., Lyme Disease Diagnostic Hints And Treatment Guidelines For Lyme And Other Tick Borne Illnesses, Fifteenth Edition, Copyright September, 2005. Available on The One Click Group website:
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Carruthers, B. et al (2003) “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” Journal of Chronic Fatigue Syndrome, Vol. 11 (1), pp 7 - 115. Also available on the One Click website:
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Carruthers B, van de Sande M, An Overview of the Canadian Consensus Document, A Clinical Case Definition and Guidelines for Medical Practitioners. Available on the One Click website:
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Channel 4 News, Cancer United Campaign, Roche Pharmaceutical, Dr Ian Gibson MP. 19 October 2006. Available here:
http://www.channel4.com/player/v2/player.jsp?showId=2475

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Chapman S., Confusion over arrangements, 'inquiry' Oral Hearings 2 & 3, 14 June 2006 - 19 June 2006. Available on The One Click Group website:
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Chapman S., Farrell C., Consultation, consultation, consultation?, 5 December 2006. Available on The One Click Group website:
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Chapman S., Farrell C., Emperor Gibson’s new suit of consultation clothes, 9 December 2006. Available on The One Click Group website:
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Chief Medical Officer’s report of CFS/ME Working Group (2001), Department of Health, Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline. 273539 1p 0.5k October 06 (CWP). Available on the One Click website:
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Consensus Report : Family Law Reform, Mismanagement: Social and Family Policy, Mr Bruce Clark, DfES: 2000-2005, Re: Munchausen Syndrome by Proxy; fabricated or induced illness; shaken babies; medical evidence; taking into care; adoptions; re-classification of sick children as abused children; the misdirection of Social Work, Child Protection and of the Family Courts. 19 July 2005: Initial hardcopy distribution Restricted until: 19 September 2005. Available on The One Click Group website at:
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Dexhaven, 'Initial Thoughts – Gibson Inquiry', 27 November 2006. Available on The One Click Group website:
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Donta S, Issues in the Diagnosis of Lyme Disease. Lyme Disease Action UK 6th UK Tick Borne Conference, Sheffield, June 2006. Available at:
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Dunn, L. and Scottish Cross Party Group on ME (2005) ‘Myalgic Encephalomyelitis (ME)- the impact on sufferers: is health policy in Scotland on the right path?’ Available on the One Click website (Archive number 595) Evidenced-Based Guidelines for the Management of Lyme Disease, The ILADS Working Group, 2006. Available at:
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Fallon Brian A., MD, Tager Felice, PhD, Keilp John, PhD, Weiss Nicola, PhD,. Liebowitz Michael R, MD, Fein Lesley, MD, Liegner Kenneth, MD, ‘Repeated Antibiotic Treatment in Chronic Lyme Disease’, Journal of Spirochetal and TickBorne Diseases 6(4):94-102, 1999. Available on the One Click website:
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Fulcher, K.Y. White, P. ‘Randomised Control Trial of graded exercise in patients with the chronic fatigue syndrome’ British Medical Journal 7th June 1997:vol 314:1647-1662. Gibson I., MP, Short K., Radio Norfolk Interview, Discussing ME, 4 August 2005. Available on The One Click Group website:
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Gibson I., MP, Encephalomyelitis (CFS/ME) A new look at Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (CFS/ME), doi:10.1136/jcp.2006.042432 J. Clin. Pathol. published online 25 Aug 2006. Available on The One Click Group website:
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Gibson Report - Inquiry into the status of CFS / M.E. and research into causes and treatment, 26 November 2006. Available on The One Click Group website:
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Gibson Report Press Release, 10.00 pm, Sunday 26 November 2006. Available on The One Click Group website:
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Gibson I., MP, Interview with Dr Ian Gibson MP, 5 December 2006. Available on The One Click Group website:
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Hooper, M. et al “The Mental Health Movement: Persecution of Patients?” (2004) Available on the One Click Website:

Hooper M., Stewart K. (Margaret Williams), ME: Why No Accountability? A synopsis for the UK Parliamentary Inquiry, 7 November 2005. Available on The One Click Group website:
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Hooper M., Hooper Response to Ian Gibson, 'press release' and 'inquiry' Terms of Reference, 3 December 2005. Available on The One Click Group website:
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Hooper M., Marshall E., Stewart K. (Margaret Williams) Evidence-based Policy or Policy-based Evidence?, 20 November 2005. Available on The One Click Group website:
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Hooper M., Marshall E., Stewart K. (Margaret Williams), Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome, 12 December 2005. Available on The One Click Group website:
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Hooper M, ‘Myalgic Encephalomyelitis (ME): a review with emphasis on key findings in biomedical research’, J. Clin. Pathol. published online 25 Aug 2006;doi:10.1136/jcp.2006.042408. Available on The One Click Group website:
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Hooper M., A response and Appreciation of the Gibson Inquiry Report, 5 December 2006. Available on The One Click Group website:
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Ho-Yen D, ‘Lyme disease - let's dispel the myths’, ME Essential, Issue 100, October 2006. Hyde, B. Bastien, S. Jain, A. The Clinical and Scientific Basis of ME/CFS (1992) Nightingale Research Foundation, Canada. Hyde B. The clinical investigation of acute onset ME/CFS and MS following recombinant hepatitis B immunisation. In: Second world congress on CFS and related disorders; 1999. Hyde B. The Complexities of Diagnosis, Chronic fatigue syndrome, I. Jason, Leonard A. II. Fennell, Patricia III. Taylor, Renee R., 1970- RB150.F37H36 2003 ISBN 047141512X. Available on the One Click website:
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Hyde, B, Jain, A. ‘Clinical Observations of Central Nervous System Dysfunction in Post-Infectious, Acute Onset, ME/CFS’ in Hyde et al, 1992. Jason L.A. Torres-Harding S.R. Jurgens, A. Helgerson, J. “Comparing the Fukuda et al. Criteria and the Canadian Case Definition for chronic Fatigue Syndrome”. Journal of Chronic Fatigue Syndrome 12 (1):37-52, 2004. Jason, L. Comparing the Canadian Clinical Definition and the Fukuda Criteria For Chronic Fatigue Syndrome, “Quest”, National ME/FM Action Network #67, 2004. Available on: http://www.mefmaction.net/default.aspx?page=consensusjasonstudy Also available on the One Click Website, Archive Number 614. Kennedy, A. (2004) A Short Summary Of The Psychiatric Paradigm Of ME/CFS. Available on the One Click Group Website: www.theoneclickgroup.co.uk

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Kennedy, A. Bryant, J. ‘A Summary of the Inherent Theoretical, Methodological and Ethical Flaws in the PACE Trial’ 21 October 2004. Available on the One Click Website Home page www.theoneclickgroup.co.uk Kennedy A., Bryant J., The One Click Presentation to the Gibson 'inquiry', Oral Evidence Hearing 1, 18 April 2006. Available on The One Click Group website:
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Kennedy A., Bryant J., Corrections on Hooper Report, Gibson 'inquiry' GSRME Committee Panel, 23 April 2006. Available on The One Click Group website:
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Kennedy A., Letter to Richard Taylor MP, GSRME Member, Inquiry Terms of Reference information request, 4 December 2006. Available on The One Click Group website:
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Livengood Jill A., Gilmore Jr Robert D, Invasion of human neuronal and glial cells by an infectious strain of Borrelia burgdorferi, Microbes and Infection (2006), doi:10.1016/j.micinf.2006.08.014. Available on the One Click website:
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Marrin M., Public inquiries, The Sunday Times, 20 November 2005. Available on The One Click Group website:

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Marshall, E.P. Williams/Stewart, M. Hooper, M. ‘What is ME? What is CFS? Information for Clinicians and Lawyers’ December 2001. Available on the ME Action UK Website:
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National Institute for Health and Clinical Excellence, The Guidelines Manual, April 2006. Available on the One Click Website:
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O’Connell S, Southampton Public Health Laboratory, Lyme Disease, The Medicine Publishing Company Ltd, Copyright © 2003. Available on the One Click website:
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One Click, The Underbelly of ME/CFS Politics Revealed with a foreword by Martin J. Walker, August 2005. Available on The One Click Group website:
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One Click, Dr Ian Gibson MP Biography, April 2006. Available on The One Click Group website:
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One Click, Gibson Inquiry Report News 1, 29 November 2006. Available on The One Click Group website:
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One Click, Gibson Inquiry Report News 2, 30 November 2006. Available on The One Click Group website:
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One Click, Gibson Inquiry - What did they do with the evidence?, 5 December 2006. Available on The One Click Group website:
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One Click, Dr Ian Gibson MP Goes Berserk, Litigation Threatened, 6 December 2006. Available on The One Click Group website:
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One Click, The Gibson Tape - Lies, Damned Lies, 8 December 2006. Available on The One Click Group website:
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One Click, The Gibson CFS/ME Inquiry Scandal Proceeds Apace - A Disgraceful Business carried out by the Disgraced, 9 December 2006. Available on The One Click Group website:
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One Click, Hooper 'Inquiry' Spin, 9 December 2006. Available on The One Click Group website:
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Reuber M, Mitchell A J, Howlett S J, Crimlisk H L and Grünewald R A, Functional symptoms in neurology: questions and answers, Journal of Neurology Neurosurgery and Psychiatry 2005;76:307-314. Available on the One Click website:
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RiME - Campaigning for research into Myalgic Encephalomyelitis, NHS ‘CFS/ME’ Centres Condemned, August 2006. Available on the One Click website:
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Robbins C., 'Collusion and Corruption in GM Policy', Dr Ian Gibson MP, SCIENCE IN SOCIETY 23, AUTUMN 2004. Available at:
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Royal College of Paediatric and Child Health Guidelines on ME/CFS, December 2004. Available on The One Click Group website:
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Sayer J., The 'Gibson Inquiry' Report - Half Empty or Half Full?, 30 November 2006. Available on The One Click Group website:
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Shepherd C. Pacing and exercise in chronic fatigue syndrome. Physiother 2001 Aug;87(8):395-396. Short K., Press Release, 'Parliamentary Inquiry into Myalgic Encephalomyelitis Urgently Needed', despatched to local Norfolk media, I August 2005. Available on The One Click Group website:
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Short, K., 4 November 2005 Secret Gibson Meeting, published 31 December 2005. Available on The One Click Group website:
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Short, K., Open Letter to Ian Gibson, Short boycotts 'inquiry', 5 December 2005. Available on The One Click Group website:
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Short, K., Advance seeds copies of Gibson Report, Open Letter to the ME/CFS community, 25 November 2006. Available on The One Click Group website:
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Short, K., I advance seeded copies of Gibson Report with the permission of Dr Ian Gibson MP, 8 December 2006. Available on The One Click Group website:
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Short K., I quit all ME/CFS Politics, 11 December 2006. Available on The One Click Group website:
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Speight, N., Consultant Paediatrician, MSBP and ME/CFS in children correspondence with health advocate Suzy Chapman, 29 November 2006. Stein, E. ‘How to differentiate CFS from Psychiatric Disorder’ (2001) Available on the Alison Hunter Memorial Foundation Website: www.ahmf.org/medpolstein.htm Stewart K. (Margaret Williams ), A Farewell Message for Professor Wessely?, 19 July 2006. Available on The One Click Group website:
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Stewart, K. (Margaret Williams), Summary of Key Points in the Report of the Gibson Parliamentary Inquiry. 26 November 2006. Available on The One Click Group website:
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Stewart, K. (Margaret Williams), A few facts about the Gibson Report, 29 November 2006. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/MECFS_pol/Stewart%20Facts%20On%20Gibson.htm

Stulemeijer, M. de Jong, L.W.A.M. Fiselier, T.J.W. Hoogveld, SW.B. Bleijenberg, G. ‘Cognitive Behaviour Therapy for Adolescents with Chronic Fatigue syndrome: A Randomised Controlled Trial‘ BMJ.com (online) 7th December 2004. Taylor, David, MP, Incorrect ME/CFS terminonology and WHO classification correspondence, 14 June 2005 - 11 July 2005. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/MECFS_pol/David%20Taylor%20MP%20Correspondence.doc

Taylor, Richard, MP, Letter to Angela Kennedy, 19 December 2005. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/MECFS_pol/Richard%20Taylor%20Response.rtf

Taylor, Richard, MP, Parliamentary Survey, The Cross-Party Group of MPs, Munchausen Sydrome By Proxy, House of Commons, October 2006. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/MSBP%20%20Parliamentary%20Survey.doc

Van De Sande, M. ‘ME/CFS Post-Exertional Malaise / Fatigue and Exercise’ Quest (Newsletter of the National ME/FM Action Network) #60, June/July, 2003. Also available on: www.mefmaction.net/default.aspx?Page=selectedarticlesmedical Valentine-Thon, E., et al, A novel lymphocyte transformation test (LTT-MELISA ®) for Lyme borreliosis, Diagnostic Microbiology and Infectious Disease, Received 18 April 2006; accepted 7 June 2006. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/Borreliosis/The%20LTTMELISA%20Test%20For%20Lyme%20Borreliosis.pdf

Walker M. J, Skewed, Psychiatric hegemony and the manufacture of mental illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome, Slingshot Publications, ISBN 0-9519646-4-X, August 2003. Available at: http://www.zero-risk.org/other.htm Walker M. J, The Ghost Lobby, New Labour and the Pharmaceutical Industry, December 2004. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/MJ%20Walker%20%20The%20Ghost%20Lobby.1.doc

Walker M. J, Brave New World of Zero Risk, Covert Strategy in British Science Policy, Slingshot Publications, August 2005. Available at:
http://www.zero-risk.org/thebook.htm

Walker M. J, Realpolitik and ME, 8 November 2005. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/ME-CFS_pol/Realpolitik%20and%20ME.doc

Walker M. J, Those Who Talk of Victory Have Often Already Been Defeated And Other Slogans For Toothless Parliamentarians, Michael Connarty MP, Dr Ian Gibson MP, 14 January 2007. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/ME-CFS_pol/Walker%20on%20Connarty.pdf

Wessely, S. “Microbes, Mental Illness, the Media and ME: the Construction of Disease” Eliot Slater Memorial Lecture, 12 May 1994. Available with comment by Margaret Williams/Kate Stewart:
http://www.meactionuk.org.uk/wessely_speech_120594.htm

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Woodcroft I., First Gibson 'inquiry' Administrator, 'press release', announcement of the formation of the Group on Scientific Research into M.E, 1 December 2005. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/MECFS_pol/Group%20on%20Scientific%20Research%20into%20ME.doc

World Health Organisation Statement on ME/CFS from Andre l’Hours, World Health Organisation. Available on The One Click Group website:
http://www.theoneclickgroup.co.uk/documents/ME-CFS_docs/WHO%20STATEMENT.doc

The One Click Group APPENDIX ONE
CONTENTS

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1. How To Solve A Problem Like ME/CFS : Why The Gibson Report Has Failed Patients by Lara. 2. The ‘Gibson Inquiry’ Report – Half Empty of Half Full by John Sayer. 3. Initial Thoughts, Gibson Inquiry by Dexhaven. 4. Consultation, consultation, consultation? By Suzy Chapman and Ciaran Farrell.

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1. How To Solve A Problem Like ME/CFS: Why The Gibson Report Has Failed Patients.
By Lara
9 December 2006 Tackling the inaccuracies in the Gibson Report must be the task of the century. Having read it I have struggled to think of a succinct way to sum up its enormous failings. Some of it was just plain nonsensical (we don’t know the cause, but we know it isn’t Lyme borreliosis), some of it farcical (Simon ‘poor me’ Wessely wouldn’t come to the ‘inquiry’ because some nasty patient groups ganged up on him) and some of it dangerously inaccurate (the Munchausen by Proxy reference). However there is one overriding problem within the report in my opinion, which I believe stands out against all the others. The following extracted from the report demonstrates the issue: “This association with infections has prompted a search for infective agents and there is now reasonably convincing evidence that some infections do precipitate the illness.” “Research has focussed on each of these possibilities but a search for continuing active infections has been uniformly negative even though tests of past infections remain positive as they do in those who recover fully.” “Future research therefore needs to focus on efforts to categorise the illness or illnesses and on possible infective or other precipitating causes and into the factors contributing to a person’s predisposition to the disease.” “There is a need to undertake further research of post viral infective cause in carefully controlled studies.” “The Epstein Barr virus was thought to be principally responsible for CFS/ME for some time, the more recent virus to enter the debate is the Coxsackie. This is because they have an immunosuppressive effect which potentially causes the symptoms of CFS/ME. Viruses are areas which need further research. It is clear that fatigue is a much recorded post-viral symptom. However, there is not enough evidence to determine whether post-viral CFS/ME is a separate illness from CFS/ME.” With the casual wave of the hand and not a sniff of a reference, the entire evidence-base of current and on-going infections in ME/CFS was discarded.

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The Canadian Guidelines (CG) for ME/CFS [1] (which ironically, appeared in the Gibson report) contains at least 30 references in the original document (judging from the title alone) looking specifically at on-going infections in ME/CFS patients (e.g. HHV-6, HHV-7, mycoplasma, chlamydia etc) and there are many others which did not appear in the CG. All of these seem to have been ignored by the Gibson Inquiry. What emerged instead was a dogged adherence to the concept of ‘post-infectious fatigue’. In truth this premise bears little difference to the psychiatric paradigm and simply suggests patients have some unique inability to recover from a viral infection or ‘other precipitating cause’. This model is however placed under the ‘biomedical’ banner in an attempt to win patient support. Adoption of such a tactic is likely to delay appropriate tests and treatments for ME/CFS patients for the best part of a decade or more and to waste large sums of taxpayer’s money. In the meantime the psychosocial lobby will be able to steamroll ahead unchallenged by government with its un-evidenced and harmful CBT/GET approaches financed by a huge cash handout in the form of £180 m of UK taxpayers’ money. In contrast to the Gibson report, I would like to back up my statements with a little logic and a few key references. It may be helpful to consider an approach based on the schematic below. Schematic Approach to Treating ME/CFS Labelled Patients

Clinical Observations

Existing Definitions

Working Hypothesis Study Design

Existing Research

Causes Tests & Diagnostics Effects Treatments

Cures

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So how do you solve a problem like ME/CFS? Well, perhaps, we could look at ALL the research published to date and consider the existing findings as potentially worthy of larger scale clinical studies (you know like those ones the psychiatrists get all the money for). Yes and you might also want to consider the clinical observations made by doctors who have treated innumerous patients labelled with ME/CFS, the sort of thing that they present at conferences, even if they can’t always obtain funding for larger trials or get the results past the psychiatrically biased peer review process. Oh and you might want to consider the definitions of the disease as set out, especially the most up to date ones, which were based on the hundreds of “authentic” biomedical studies and clinical experience to date. So what do you do next? a) Ignore 90% of the information and plough ahead unabated with highly controversial and harmful psychosocial approaches? b) Set up a committee, have lots of tea and biscuits and come up with some sort of half-baked compromise that attempts to make the psychiatric lobby look less like the charlatans that they really are? c) Hone in on the key issues such as large scale testing for infectious agents, postulated time and again to be causative in ME/CFS labelled patients? Check out markers that seem to be positive in large numbers of patients such as abnormal RNASEl pathways, lymphocyte counts? Check out nutritional deficiencies such as Vitamin D ratios, low zinc, low magnesium, blocked ATP pathways? OK, forgive the satire, there really is no need for answers on a postcard. So, now having chosen a real ‘biomedical’ Working Hypothesis, and some decent areas already researched to date, what do we do next? a) Give all the money to anyone with BA(Psych) or preferably FRCPsych after their names (he’s a paediatrician honest, love) and watch them laughing all the way to the bank? b) Get your psychiatrically-biased, sold out buddies of doctors and researchers to round up some Fukuda patients (you know, the ones who seem a bit tired, fed up of work, menopause not far off, husband’s run off with the babysitter). Send them in for the studies, which will of course be negative or at best inconclusive? c) Choose patients who best fit the clinical definitions based on “authentic” biomedical research and send them off to have some serious scientific investigations? Well, again, this isn’t a GCSE examination, more like a PhD in the blindingly obvious. So now we’re warming up how does all this research fit together? What are we going to use as a test? How are we going to know what is a cause and what is an effect? Do we ever know that in a disease, or do we just find out what is treatable and proceed with clinical treatments? Well, I guess we’ll just have to be flexible, because if we spend all our time just looking for a single cause, test and treatment, we might not get anywhere for years and years and that would never suit, well….anyone except psychiatrists and psychologists really, as they seem to get paid by default until we can find out the ‘cause’ of this otherwise ‘medically unexplained condition’.

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Perhaps in choosing a more homogeneous set of patients (based on the CG criteria) and choosing a raft of tests that have been studied in the past, then eventually through an iterative process using something a bit like the schematic, one might obtain a better way of diagnosing and treating patients. If infections are found early on as a cause, these can potentially be treated, but in addition effects could also be used as diagnostics, or as individual areas for treatment. Without wishing to limit the approach, the emerging evidence that Tick Borne Diseases (TBD) have been misdiagnosed in many cases as ME/CFS must be addressed as a priority. A comparison of the CG symptoms with the ILADS guidelines (IG) for Lyme Disease (encompassing lyme borreliosis and other TBD) reveals a stark similarity. In fact I can barely find a symptom that does not have a match. Unsurprisingly this was the conclusion of the authors of the IG who stated: “The clinical features of chronic Lyme disease can be indistinguishable from fibromyalgia and chronic fatigue syndrome. These illnesses must be closely scrutinized for the possibility of etiological B. burgdorferi infection.” Comparison of ME/CFS Symptoms with Lyme Borreliosis ME/CFS (CG) Physical and mental fatigue, post exertional fatigue/pain Unrefreshing Sleep Pain (muscles, joints, migratory, shooting, burning, aching), 75% meet criteria for Fibromyalgia Syndrome (FMS) Temporomandibular Jaw (TMJ) dysfunction Headaches Muscle Weakness and Fasciculation Intracranial abnormalities Lyme Borreliosis (IG) Fatigue Sleep Disturbance Myalgia, Back Pain, Jaw Pain, testicular/pelvic pain, stiff neck. Migrating arthralgias, stiffness and, less commonly, frank arthritis, Headaches Muscle twitching Cranial nerve disturbance (facial numbness, pain, tingling, palsy or optic neuritis) Low grade fevers, hot flashes or chills, night sweats, Sore Throat/ Swollen Glands Chest pain and palpitations, lightheadedness, dizziness, vertigo, cardiac symptoms Blurred Vision & Eye Pain Poor Concentration and Memory Loss, Cognitive dysfunction Tinnitus, photosensitivity Irritability and mood swings, depression Abdominal pain/nausea * Paresthesia** Diarrhoea, urinary frequency**

Low Body Temp, Sweats, chills, cold extremities, intolerance to hot/cold Sore Throat/Flu symptoms/ Tender Lymph Nodes Orthostatic Intolerance (NMH/POTS), palpitations, cardiac arrhythmias, dizziness, vertigo, extreme pallor Visual impairments Memory Impairment, Difficulty with information processing Sensitivity to Light & Noise Emotional overload/anxiety Marked weight change, anorexia, loss of appetite Multiple Chemical Sensitivity (MCS) Sensory/Perceptual Disturbance Urinary Frequency & Bladder Dysfunction, IBS

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* While MCS is not specifically mentioned in the IG, other researchers have noted it as present in Lyme Borreliosis patients [3] ** These symptoms were not specifically mentioned in the IG, but again have been noted by other researchers [4] Looking at the comparison of ME/CFS it is almost impossible to see how mixing up the ‘two diseases’ could be avoided. Certainly a General Practitioner, who has been advised that in the case of ME/CFS only routine tests are necessary, it is highly unlikely that he/she will be able to tell if they have correctly diagnosed the patient. This comparison of the CG and IG alone highlights the extreme need for ME/CFS patients to undergo thorough testing for TBD pathogens. In avoiding the issue, the Gibson report may have entirely missed the point and the opportunity to progress ME/CFS research and treatments in a manner helpful to many patients sitting under this label. It is a great pity that the Inquiry did not look deeper into this issue and that it did not invite a range of experts with experience of diagnosing and treating TBD to give evidence. Limiting themselves to taking advice from the UK Health Protection Agency (HPA) and subsequently deciding (in the absence of the knowledge on what causes ME/CFS) that they must be two separate diseases, constitutes an incredibly blinkered and closed-minded approach that is no different from the manner in which the psychiatric lobby operates. One can now only hope that the Gibson report has not done more harm than good and that future research will include testing for bacterial and viral infections in ME/CFS patients, a good part of which could be achieved using the £180 million earmarked for CBT/GET therapies. One thing is certain, in any judicial review going forward a vigorous campaign for testing of infectious diseases must be kept up. Patients simply do not have another decade of their lives to give up to tailchasing, closed-minded and flawed research and treatment approaches in ME/CFS. References 1. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. Journal of Chronic Fatigue Syndrome Vol 11, 1, 2003, Carruthers et al. http://www.theoneclickgroup.co.uk/documents/MECFS_docs/Canadian%20Definition%20of%20ME-CFS.pdf 2. Evidenced-Based Guidelines for the Management of Lyme Disease, The ILADS Working Group, 2006. http://www.ilads.org/files/ILADS_Guidelines.pdf 3. Lyme disease’: ancient engine of an unrecognised borreliosis pandemic? Harvey W.T and Salvato P. Medical Hypotheses 60, 5, 742–759, 2003. www.ilads.org/files/harvey.pdf 4. Issues in the Diagnosis of Lyme Disease. Donta S. Lyme Disease Action UK 6th UK Tick Borne Conference, Sheffield, June 2006 http://www.lymediseaseaction.org.uk/conf2006/donta/img0.html

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2. The 'Gibson Inquiry' Report -Half Empty or Half Full?
John Sayer, 30th. November 2006

The 'Gibson Inquiry' Report - Half Empty or Half Full?
John Sayer, 30th. November 2006

I will be 54 in a few weeks, by which time I will have been suffering from severe M.E. for 14 years. I had to accept retirement (I was a high school teacher) at the age of 40, when, as tradition would have it, my life should have begun, not ended. I welcome any attempt to improve the lives, by whatever route, of M.E. sufferers, whether it be in terms of medical, social or financial care. When I first became ill, I was assured that I could expect to be back on my feet and working again in 2-4 years. I did expect it, but almost 14 years down the line, despite having an optimistic, positive, 'it-isn't-going-to-beat-me' attitude, it still hasn't happened. But I live in hope. I now realise, looking back, that those attempting to reassure me 14 years ago did not understand the crucial distinction between Chronic Fatigue and Myalgic Encephalomyelitis. When the 'Gibson Inquiry' was launched, I had mixed expectations: I did not know whether the GSRME would have any influence, would make any difference, or, indeed, would even be supportive of our case. I was a witness to the meeting between Dr. Ian Gibson and Prof. Malcolm Hooper in 2005, which resulted in Dr. Gibson announcing that he would try for a parliamentary inquiry. I was optimistic at that point, since Prof. Hooper had made an eloquent and convincing case to Dr. Gibson for the acceptance of M.E. as a physical illness (and I thank him for that). It struck me at the time that had the whole world been able to listen in, it surely would have concluded that the psychological/physical debate was well and truly over - dead and buried forever. I did not know whether the GSRME would be presented with the right kind of evidence on which to come to meaningful conclusions. I did not know whether the membership of the Group would be conducive to a fair examination of the evidence prevented - but I was encouraged by Prof. Hooper's presentation to Dr. Gibson.

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However, I was most concerned when I read the subsequent local Norfolk newspaper coverage ("Norwich Evening News") of the announcement of the proposed launch of an inquiry, which quoted Dr. Gibson as commenting, "Some say it is psychiatric and others say it is physical but it could be a bit of both." To me, this did not bode well for a conclusion to an inquiry which would come down on the side of accepting M.E. as physical. I was hoping that, having reviewed the evidence, the Group would conclude that the case had indeed been made for accepting M.E. as such. The Report, however, states (p26): "It seems possible that...there is likely to be a physical element and a psychological element to the illness...For some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease." Alarmed by this, I decided that my best approach to this Report would be to go through it first to pick out what I considered to be its weaknesses, then its strengths, then come to an informed conclusion as to whether, on balance, it was helpful or unhelpful. I embarked on this exercise still mentally and physically exhausted after producing a response to the draft NICE guidelines on 'CFS/ME' on behalf of our local M.E. support group at extremely short notice. I am aware that I may not have done as thorough a job as I would like here, but I have had to keep at it while still in the right frame of mind, otherwise I would probably not be able to pick up the momentum again. I mention this because I would have no problem with anyone pointing out to me anything I may have missed or got wrong. I am happy for others to e-mail me on the subject, either privately (john23@sayer.abel.co.uk) or on the e-lists I subscribe to.

(A) 'Weaknesses': p7 (1.1 Why is this report necessary?): "At present the only treatments are symptomatic and psychosocial. For the extremely affected sufferer this is not satisfactory." Dissatisfaction with symptomatic and psychosocial treatments is not restricted to "the extremely affected sufferer" alone: this implies that for the majority of sufferers there is no problem with these treatments, which is not the case. This assertion calls into the question the Group's statement here that "Our task is to highlight the ongoing struggle of the CFS/ME community and to ensure that the voice of the patient is heard." [emphasis added]

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p7/8 (1.3 The Cost): "No major biomedical research projects funded by the MRC have been brought to our notice." This does not mean to say that no such projects have been undertaken, only that the Group isn't aware of any. It would have had more impact to state plainly that the MRC has not funded any major (or even minor?) biomedical research. "In 2003 Action for ME indicated that CFS/ME may be costing the UK £3.5 billion annually in medical services, social benefits and lost incomes." It is unfortunate that the Report repeats this claim by AfME, since it would appear that the government's response to this has not been one of being spurred into action on behalf of M.E. patients but rather of trying to reduce the cost to the nation by embarking on a programme of denying one million claimants their entitlement to incapacity benefits (Pathways To Work etc.).

p8 (1.4 Central issues): "The Group believe that physical aspects have received less attention or support than they deserve and that this shortcoming must be addressed." This could be construed as implying an acceptance by the Group that there are non-physical - i.e. psychological - aspects to M.E. (a view which is reinforced in other parts of this Report).

p8 (1.4.5): "...some patients become depressed as a result of their illness and sometimes treatment of this depression is helpful for at least that part of their illness." The phrase "that part of their illness" implies that depression is accepted by the Group as part of M.E.

p11 (2.3 WHO definition): "The WHO in Geneva holds an internationally recognised classification that ME is a neurological disease. The Group feels that these definitional difficulties have only served to confuse the picture and will not be resolved unless further research is done to clarify the nature of the disease." The danger here is that, despite the WHO classifying M.E. as neurological, the Report might be seen as suggesting that this classification is now open to question: "unless further research is done to clarify the nature of the disease."

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p11 (2.4. Teenagers and Children): "...the Group accepts that CFS/ME is prevalent amongst teenagers and possibly in children. However it is very unlikely to occur in infants and young children and so should not be confused with Munchausen by proxy for example." This seems to be saying (a) that "Munchausen by proxy" exists and (b) that it can often be mistaken for M.E. in infants and young children. If so, this is highly alarming and destructive.

p12 (2.5.1 Kumar and Clark Endorsed by the BMA): "While CFS/ME remains only in the Psychological section of medical discourse, there can be little chance of progress." The use of the word "only" here would seem to imply that the Group believes 'CFS/ME' should be classed as both psychological and physical. "The Group was interested by the concept of a 'biopsychosocial' model of illness as long as one aspect is not given particular prevalence over the other, both approaches must be considered at the same time." By "both approaches" one assumes is meant (a) the biopsychosocial model and (b) the biomedical model. If this is the case, then what the Report seems to be saying here is that both models have equal validity (a point reinforced elsewhere).

p19 (3.1. The Oral Hearings): "The overwhelming message from all of our speakers was that more money was needed to develop knowledge in this contentious area." It is interesting to note the use of the word "contentious" here, especially for those who are already satisfied that the psychological/physical debate has been resolved by overwhelming evidence for M.E. being wholly physical. It is no surprise that the 'psychologisers' are calling for more money to fund their own research. Prominence is given to comments from Prof. Peter White ('psychologiser'), e.g. "...ring fence some money and the scientists will follow." "Scientists" would, of course, include psychologists and psychiatrists.

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p20 (3.2 Other Evidence We Received): "Professor [Simon] Wessely is considered by many to be the leading expert on treating CFS/ME and the CFS/ME treatment centres set up by the NHS have been to his model." This phrase appears to be an acknowledgement and endorsement of Prof. Wessely as "the leading expert" on M.E. Its use would be redundant otherwise. Yet it has been deliberately used. The concept of Prof. Wessely as "leading expert" is reinforced in the next paragraph by the comment: "The Group were disappointed not to have the opportunity to discuss this important issue with such a key figure." "Many patient groups psychologically based." oppose these treatments because...they are

The use of the phrase "many patient groups" instead of, say, "many M.E. patients and advocates" is significant here in light of the reference three sentences later to "extreme harassment he [Prof. Wessely] received from a very small fringe section of the M.E. community": the Group appears to believe that that "patient groups" do not necessarily represent the views of M.E. patients in general - that the 'broad church' of the 'M.E. community' contains 'fringe' elements, who perhaps should not be taken seriously.

(pp20/21): Reference is made to the work in the fields of cardiology, brain activity/scans and viral effects of Drs. Paul Cheney, Byron Hyde and John Richardson, but the impact of their findings is somewhat diluted by the qualifying phrases "this work has yet to be published, "these observations await confirmation", "others have yet to confirm or refute these observations" and "the NICE draft guidelines make little reference to the possibility of viral investigation in ME patients". "The Group recommends, firstly, that these studies and other others like them must be examined by an independent scientific advisory committee...Secondly, many of the studies we received were conducted on a very limited scale and their findings need to be confirmed or refuted by largescale investigation. Until this happens, the field will remain confused." [emphasis added] This indicates that the Group is not convinced by the research referred to and is, despite the presentations and submissions made to the Inquiry, still of the opinion that the issue of the psychological/physical debate remains confused, which will come as a disappointment to those who at least hoped, if not expected, that the Inquiry would conclude that biomedical evidence has already settled the debate.

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p21 (3.3. Potential Causes of CFS/ME): "Fatigue is very common." This is an unfortunate opening sentence for this section, echoing as it does what is perceived by M.E. patients to be a mantra of the 'psychologisers' namely that the cardinal feature/main symptom/characteristic hallmark of M.E. is 'fatigue', when M.E. patients, at least, know that it isn't.

(p22): Reference is made to a number of biomedical investigations (MRI scans, spinal inflammatory changes etc.) but their findings, once again, are tempered by the comment: "Unfortunately none of these changes have yet been proven to be specific for the disease since similar findings are detected in other conditions and it is not yet possible to determine whether these changes are the result of the disorder or are its cause."

p22 (3.3.1 Lyme Borreliosis): The Report states that "while those with Lyme Borreliosis exhibit many similar symptoms to CFS/ME the Group believes they are two separate afflictions", but without stating any reason for this conclusion, other than giving a mention of unspecified "discussions with the Health Protection Agency".

pp22/23 (3.3.2 Other Viruses): The Report states, "Viruses are areas which need further research", continuing, "It is clear that fatigue is a much recorded post-viral symptom" but cautioning that "there is not enough evidence to determine whether post-viral CFS/ME is a separate illness from CFS/ME." This last sentence implies the Group's belief that there may be a number of versions of 'CFS/ME', identified by their respective triggers - as well as a (the?) version which has no identifiable trigger.

p23 (3.3.3. Organophosphates): "The symptoms associated with the chronic effects of exposure to OP’s are very similar to those for CFS/ME." In other words, the Group believes that organophosphate poisoning and M.E. are (as with Lyme Borreliosis) separate afflictions.

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p23 (3.3.4 Vaccinations): "The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause." This statement will come as a major surprise to those who have written papers on the links between M.E. and vaccinations and those patients who can accurately pinpoint the onset of their illness as immediately following a vaccination.

p24 (4.2. Existing Treatments): The Group states its position clearly: "Psychosocial methods of treatment do have a role to play as the relation between mind and body in disease is complex." [emphasis added]

p24 (4.3 Cognitive Behavioural Therapy): The Report states categorically (echoing the current NICE draft guidelines): "The most effective psychological therapy, which has been shown as such in controlled clinical trials, is Cognitive Behaviour Therapy (CBT)." Prominence is given here to one of the two (out of six) presenters at the Oral Hearings sent in his place by Prof. Simon Wessely: "Prof Trudie Chandler [sic] presented to the group on this treatment. Prof Chandler’s results were impressive. This treatment certainly has a role to play in treating CFS/ME...in CFS/ME this, and GET...are the only available treatments which have been shown to be effective in several controlled trials." Noting that "Prof Chandler suggested that CBT has a biological effect on the body" (which is a claim for mind-over-matter), the Report states, "The Group would like to see further research into what this effect is as it may open avenues of investigation into biomedical causes." This last sentence has far-reaching implications: the Group is apparently willing to accept that thoughts can actually cause biological changes and that, further, this validates research into the claim by some (i.e. the 'psychologisers' and other New Age 'gurus') that M.E. is caused by thoughts.

pp24/25 (4.4. Graded Exercise Therapy): At first glance the Group's comments on GET seem to be expressing misgivings and advising caution about its worth as a treatment for M.E., but

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this must be taken in the context of the earlier remark (p24) that "this [CBT] and GET...are the only available treatments which have been shown to be effective in several controlled trials."

p25 (4.5 Pacing): The definition of pacing given by the Report is one that M.E. patients might not recognise: "As the name suggests the patients pace themselves. They only move around or undertake activities to the extent that they are comfortable, the idea being that they will not fully exert themselves if they do this." [emphasis added] The common understanding of pacing, however, is that it entails the 'spreading out' of exertion/activity in order to prevent as much as is realistically possible the exacerbation of symptoms and/or relapses - in the same way (and for the same reason of avoiding 'burnout') as long-distance runners pace themselves. (The ultimate goal is the same: optimum achievement.)

p25 (4.6 A Holistic Approach): "[The] observation that GET may make severe sufferers feel worse has lent fuel to their often serious antipathy to the doctors offering it. Some of our evidence suggests that GET carries some risk and patients should be advised of this." It is not only "severe sufferers" who can be made worse by GET. Indeed, patient testimony reveals that many become severely affected as the direct result of GET.

(p26): It will be disheartening to many that the Group appears to hold the view that M.E. is part-physical and part-psychological: "It seems probable that...there is likely to be a physical element and a psychological element to the illness. Therefore successful treatment pays attention 'holistically' to the whole person, caring for the mind and body. For some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease." [emphasis added] It is interesting to note that here again emphasis is placed on the alleged views of "patient groups" only, with no reference to patients as individuals with their own views, or to the findings of scientific researchers.

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p26 (4.7 Other Treatments): Curiously, the Report refers here to antibiotics, antivirals and antiinflammatory agents as examples of "unorthodox therapies", remarking later (4.7.4) that "The group was intrigued but sceptical about the claims of therapeutic success for unorthodox methods of treatment", while, however, stating (4.7.1) that analgesics and anti-inflammatory agents may provide some pain relief as they can act on the myalgia." [emphasis added]

p28 (5.1 Treatment Centres): The Report does not indicate awareness of the general antipathy towards the 'CFS/ME centres', as expressed, for example, in recent communications from RiME - antipathy based on the experience of patients faced with little more than CBT and GET at these centres: "The Group is extremely pleased with the advent of these centres and we hope they will be maintained and indeed rolled out."

pp28/29 (5.2 Research Issues): Criticism of the Medical Research Council is noteworthy here, pointing out, for example, that the MRC "has funded five applications relating to CFS/ME, mostly in the psychiatric/psychosocial domain", but (again) tempering this observation with the comment: "These are to be welcomed of course since they are largely concerned with efforts to confirm or refute the nature of different forms of therapy in carefully controlled trials" - a view which many will see as naive wishful thinking, convinced as they are themselves that exercises such as the PACE and FINE trials are merely propagandic and contrived justifications for the implementation of CBT and GET in the 'CFS/ME centres'.

p33 (7.1 The Group's Response): "There is a great deal of frustration amongst the CFS/ME community that the progress made in the late 1980s and early 1990s toward regarding CFS/ME as a physical illness has been marginalised by the psychological school of thought." It has to be said, however, that even parts of this Report itself lend support to "the psychological school of thought": "The Group was interested by the concept of a 'biopsychosocial' model of illness as long as one aspect is not given particular prevalence over the other, both approaches must be considered at the same time." (p12, 2.5.1)

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"Psychosocial methods of treatment do have a role to play as the relation between mind and body in disease is complex." (p24, 4.2) "The most effective psychological therapy, which has been shown as such in controlled clinical trials, is Cognitive Behaviour Therapy (CBT)." (p24, 4.3) "Prof Trudie Chandler presented to the group on this treatment [CBT]. Prof Chandler’s results were impressive. This treatment certainly has a role to play in treating CFS/ME. Although in other illnesses this treatment is provided as an adjunct to treatment for the organic disease, in CFS/ME this, and GET...are the only available treatments which have been shown to be effective in several controlled trials." (p24, 4.3) "It seems probable that, as with most other diseases, there is likely to be a physical element and a psychological element to the illness...For some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease." (p26, 4.6)

p33 (7.2 Areas for Further Examination): "Why does the DOH not keep or collect data pertaining to the number of CFS/ME sufferers in the UK?" A very good question, but it is regrettable that the Report does not pose the obvious secondary question here: Without numbers, how can the setting up of 'CFS/ME centres' be justified or national and local funding calculated? "No representative who appeared at the Oral Hearings proposed CFS/ME was entirely psychosocial. So why has this model taken such a prominent role in the UK?" The Report answers this question itself, at 6.1 and 6.3 respectively: "At present ME/CFS is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies." "There have been numerous cases where advisors to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUMProvident. Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

(B) 'Strengths': p7 (1.1 Why is this report necessary?): "...some of the CMO Report’s recommendations for further research have

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(Unfortunately, however, these recommendations are not identified.)

p9 (1.4.7 Central Issues): "More research into possible causes and treatments is vital." The 'M.E. community' regards this, and all similar statements in the Report, to be self-evident.

p10 (2.2 ME Sufferers Bill, 1988): "In Britain, there has been a clear historical bias towards research into the psychosocial explanations of CFS/ME. This is despite Parliament recognising ME as a physical illness in a Private Members Bill, the ME Sufferers Bill, in 1988." This is an important point to highlight.

p10 (2.3 WHO Definition): "There is commonly held belief circulating that the World Health Organisation (WHO) categorises CFS/ME under both neurology (i.e. disorders of the nervous system) and neurasthenia (mental and behavioural disorders or other neurotic disorders). Indeed this is reported in medical textbooks. The Group found this assertion to be incorrect." These are important points to highlight.

p12 (2.5.2 The Oxford Criteria): "The Oxford Criteria first published in 1991 is that generally used in the UK to diagnose persons with CFS/ME for research purposes. However due to the general nature of this guideline it is possible that patients with a spectrum of fatigue symptoms whom are unlikely to have authentic CFS/ME will be included in research." These are important points to highlight.

(p13): "The Group found that the international criteria paid far greater attention to the symptoms of CFS/ME while the Oxford Criteria focus very little on any symptoms other than long term tiredness. There is concern that the broad

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spectrum of patients who may be included in these criteria may lead to inaccurate results in patient studies of CFS/ME. The Group feels that there is room for a further review of the criteria which should be updated, in light of the peer reviewed and evidence based research done both internationally and in the UK in the past 15 years." These are important points to highlight.

p14 (2.6 Other Criteria): "In Canada, Dr Bruce Carruthers and his research team have developed a Diagnostic Protocol for CFS/ME. The Group found that these criteria were much more detailed, including many more symptoms of CFS/ME compared with the Oxford Criteria. Their exclusions are useful as they begin to extrapolate an idea of CFS/ME separate from other related or similar illnesses." It is gratifying that the Canadian Guidelines are given prominence here. These are important points to highlight.

p19 (3.0 The Science - Symptoms and Potential Causes): "The Group calls for a further Inquiry into the Scientific Evidence for CFS/ME by the appropriately qualified professionals. This Inquiry should be commissioned by government undertaken by an independent panel of scientific and medical experts, including virologists, immunologists, biochemists etc who can objectively assess the relevance and importance of the international scientific data." A call for a further Inquiry is welcome - but it is unclear who "appropriately qualified professionals" might be.

p19 (3.1): "There are innumerable potential causes and unusual symptoms found in CFS/ME patients, but in the UK at least, sufficient research has not been done to verify any one cause. The Group feels the necessary research must be funded immediately." The call for immediate funding is to be commended, although it might have been better to have referred to "possible causes" rather than "any one cause" (which is restrictive).

p25 (4.4 Graded Exercise Therapy): "Given the evidence from patients and Dr White the Group is concerned that

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the NICE guidelines are recommending these treatments without caveats. We heard suggestions that there is a risk of heart trouble in patients with CFS/ME. This has serious implications for GET. As such the group would recommend that the heart function is examined, especially in the severely affected, before GET is recommended." These warnings concerning the NICE guidelines and potential heart problems are to be commended - but those not labelled "severely affected" are also at risk.

p28 (5.2 Research Issues): "Provision of resources for biomedical research is urgently needed." Although self-evident to the 'M.E. community', this statement is to be commended, as is: "The MRC should do more to encourage applications for funding into biomedical models of ME."

p30 (6.1 Patient Experiences): "At present ME/CFS is defined as a psychosocial illness by the Department for Work and Pensions (DWP) and medical insurance companies. Therefore claimants are not entitled to the higher level of benefit payments. We recognise that if ME/CFS remains as one illness and/or both remain defined as psychosocial then it would be in the financial interest of both the DWP and the medical insurance companies." The raising of this issue is to be commended.

p31 (6.2 What The Government Says): "The DWP is reliant on medical opinion when determining benefit entitlement for DLA. Until medical opinion is better informed as to the nature of this illness ME sufferers will have to live with the double burden of fighting for their health and their benefits." The raising of this issue is to be commended.

p31 (6.3 How the Department for Work and Pensions Formulates CFS/ME Policy): "...government looks like adopting a new benefits policy which may still leave it discriminating against claimants with ME/CFS."

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The raising of this issue is to be commended, as is pointing out that "Given the vested interest private medical insurance companies have in ensuring CFS/ME remain classified as a psychosocial illness there is blatant conflict of interest here."

pp33/34 (7.2 Areas for Further Examination): The list of 13 "Areas for Further Examination" is to be commended but, it has to be said, consists of what the 'M.E. community' itself has been demanding for decades.

p35 (7.3 The Immediate Future): What the Report calls for is summed up in its final paragraph: "This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems which only an intense research programme can help resolve." The concern and perception of the 'M.E. community' is not so much that the MRC has not been "open-minded" enough in its attitude, but that it is being deliberately and flagrantly discriminatory where biomedical research into M.E. is concerned, and it would be preferable for this to have been stated boldly and unequivocally here. The call for an amount of spending on biomedical research equal to that already spent on psychosocial research is to be welcomed, but since this gives the impression of granting equal status to the psychosocial and biomedical models, perhaps a call for at least twice the amount (i.e.£22 million) to now be allocated to biomedical research would have had more impact.

(C) 'Synthesis': How does one summarise this Report, and by what criteria? The obvious and first criteria to be considered are the Terms of Reference of the Inquiry itself. (From the GSRME's press release, December 2005): "The Group on Scientific Research into M.E. has been established to assess

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the progress of scientific research on M.E., since the publication of the Chief Medical Officer’s Working Group Report into CFS/ME in 2002. In particular the group has been established to: • increase public understanding of scientific research into ME/CFS • evaluate progress in the development of a full programme of research into ME/CFS • identify research and funding requirements in establishing the cause of ME/CFS" (a) There is no evidence (as yet, anyway) that the GSRME has been able to "increase public understanding of scientific research into ME/CFS". Unfortunately, as far as I am aware at the time of writing, there has been no national coverage of the Report's release, only local media publicity in Norfolk (Dr. Gibson is MP for Norwich North). (b) By a "full programme of research into ME/CFS" I presume is meant literally that - a full programme. We know, however, that virtually all official research in the UK has been either biopsychosocial or psychosocial, and without at least equal biomedical research there can be no meaningful talk of a "full programme of research", thus making it impossible to "evaluate progress in the development" of one - except to say that it doesn't exist. (c) References to identifying "research and funding requirements in establishing the cause of ME/CFS" in the Report are: "There are innumerable potential causes and unusual symptoms found in CFS/ME patients, but in the UK at least, sufficient research has not been done to verify any one cause. The Group feels the necessary research must be funded immediately." (p19, 3.1) "Changes in MRI scans of the brain and in the endocrine system are also reported but again their specificity for CFS/ME is unproven and whether they result from the illness or are involved in its cause requires much further work. Inflammatory changes in the spinal cord found in a small number of post mortem specimens also points to the need for more research." (p22, 3.3) "Future research therefore needs to focus on efforts to categorise the illness or illnesses and on possible infective or other precipitating causes and into the factors contributing to a person’s predisposition to the disease." (p22, 3.3) "The Group found that there is no strong evidence to link CFS/ME to vaccination and it is unlikely to be a cause. However this is a possible area for further investigation." (p23, 3.3.4) "Prof. Chandler [sic] suggested that CBT has a biological effect on the body. The Group would like to see further research into what this effect is as it may open avenues of investigation into biological causes." (p24, 4.3) "The MRC should do more to encourage applications for funding into

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"...it is important for the MRC to be seen to be balancing this [psychiatric/psychosocial oriented research] with support for more high quality basic research into potential causes." (p29, 5.2) "The Group calls for a further Inquiry into the Scientific Evidence for ME/CFS by the appropriately qualified professionals." (p32, 7.1) "The Group believes the UK should take this opportunity to lead the way in encouraging biomedical research into potential causes of CFS/ME." (p33, 7.1) To summarise, therefore, with regard to (c) above, in terms of seeking to "identify research and funding requirements in establishing the cause of ME/CFS", the Group considers that more research is needed on: changes in MRI scans of the brain and in the endocrine system, inflammatory changes in the spinal cord, categorising the illness or illnesses, possible infective or other precipitating causes, factors contributing to predisposition to M.E., possible links with vaccination, possible mental causation, the scientific evidence for M.E., and biomedical research into potential causes, along with immediate funding for the search for a single cause. So only one of the three Terms of Reference has actually been met by the Report (although increasing public understanding of the scientific research may yet follow).

Where does this leave us? In a nutshell, the Report asks for more biomedical research, but, it must be remembered, because the GSRME is clearly not convinced by the biomedical evidence we have already and wants it checked: "...many of the studies we received were conducted on a very limited scale and their findings need to be confirmed or refuted by large-scale investigation. Until this happens, the field will remain confused." (p21, 3.2) I used the metaphor of the half empty/half full glass in the title of this review because whether this Report is considered helpful or unhelpful depends on what can be gleaned from it, and by whom. The "target audience" is not specified, but in reality it is anyone with an interest in M.E., from the government down to the patient. As a patient, what I get from it is the hope that the Report's very existence will focus attention on the need for official recognition of the international biomedical research and findings that already exist and the unacceptable

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discrimination and abuse that M.E. sufferers still face. But what horrifies me is that the Report reinforces the contention that M.E. is a predominantly psychological problem - the one aspect that I fear will overshadow other crucial points raised in the Report - and a serious concern is that those who currently have influence over policy-making (in the NHS, DWP, DoH etc.) will seize on those parts of the report which suit their own agendas [emphases added]: "The Group was interested by the concept of a 'biopsychosocial' model of illness as long as one aspect is not given particular prevalence over the other, both approaches must be considered at the same time." (p12) "Psychosocial methods of treatment do have a role to play as the relation between mind and body in disease is complex." (p24) "The most effective psychological therapy, which has been shown as such in controlled clinical trials, is Cognitive Behaviour Therapy (CBT)." (p24) "Prof. Chandler’s results were impressive. This treatment [CBT] certainly has a role to play in treating CFS/ME...in CFS/ME this, and GET...are the only available treatments which have been shown to be effective in several controlled trials." (p24) "Prof Chandler suggested that CBT has a biological effect on the body. The Group would like to see further research into what this effect is as it may open avenues of investigation into biomedical causes." (p24) "It seems probable that, as with most other diseases, there is likely to be a physical element and a psychological element to the illness...For some doctors to deny the existence of a physical part of the illness is as equally unhelpful as the claim by some patient groups that there is no psychological element to the disease." (p26) In conclusion, therefore, I'm afraid I have to say that as an M.E. sufferer, although I appreciate the GSRME putting so much time and work into this Inquiry and Report, for me personally the glass is half empty - and draining. John Sayer The 'Gibson Inquiry' Report -Half Empty or Half Full?

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3. Initial Thoughts – Gibson Inquiry From Dexhaven 27 November 2006
Thanks to One Click, you have obviously continued to work tirelessly in the last weeks, and it is very much appreciated. I just had a quick read through the report, and thought I'd send you my first impressions. I have just typed some stuff, as I wanted to put down my first impressions. 1. The report obviously calls for another 'independent scientific inquiry'. "The Group calls for a further Inquiry into the Scientific Evidence for CFS/ME by the appropriately qualified professionals." OK. Firstly, they have heard from most of the main scientific people involved in the field. There are presentations on their own website to prove it. They have already, by their own admission, heard from the most qualified people. Secondly, I thought that the chair of the group was a 'scientist', so why the further need for discussion? If I can understand the basics of what the science says then why the need for another inquiry? They are called 'Group on Scientific Research into Myalgic Encephalomyelitis (M.E.)', and so THEY ARE the inquiry that they are calling for. The very things this group are saying should be determined in another inquiry are the very things they should have achieved in this inquiry. Thirdly, from all the evidence presented it is entirely possible to make a judgement call. It does say in the report that biomedical research has been ignored, and that the current psychosocial model is useless. So why do we need another inquiry to tell us the same thing again? I get the distinct impression that the last year has been a huge waste of time if this group cannot (or does not want to) make any firm conclusions. I would also note that this 'inquiry' demonstrates the ineffectiveness of government, and the huge waste of time and money involved engaging with any political body. 2. The report confirms that there are clear links to other conditions. "the rest having a variety of other already recognised illnesses." "Their exclusions are useful as they begin to extrapolate an idea of CFS/ME separate from other related or similar illnesses." The contents of the report are very 'light', considering all the evidence presented, and the conclusions are also lacking in substance. I think it is entirely possible that the enquiry should make the conclusion that it is necessary to ensure that patients are not suffering from other conditions, before being diagnosed with CFS/ME. I would go further, and say the report does not want to admit that there has been a negligent attitude towards people who exhibit certain symptoms. Unfortunately the report doesn't make clear enough that the majority of symptoms linked with ME are also present in many other conditions, and therefore people demonstrating these symptoms are not being investigated for equally serious conditions i.e. Addison's disease Anaemia Anxiety Disorders

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Chronic Hepatitis Coeliac disease Diabetes Mellitus Diastolic Filling Dysfunction Lyme disease Major Depression Malignancy Multiple Sclerosis Myasthenia Gravis Parkinson's disease (Including early onset/young onset) Polymyalgia Rheumatica Rare myopathies Sarcoidosis Sjögren's syndrome Sleep Apnoea Syndrome Somatoform disorders Systemic Lupus Erythematosus 3. The report seems to make several conclusions about the nature and diagnosis of CFS/ME, without actually making any recommendations. The idea of using the 'Canadian Criteria' for diagnosis is a good one, however the report fails to make the recommendation that it should absolutely be used. The report makes clear that the current psychosocial appropriate, however fails to suggest another in clear terms. model isn't

The report seems to give the message that nothing can be done until we know more about the condition, however doesn't make any suggestions for the present, except for more research. I agree that there is a need for more research, however I disagree that nothing can be achieved at present. Using the 'Canadian Criteria' would be a start, and also excluding all other possible conditions would be prudent for patients. The report in general terms fails to help any person at present, and further, seems to ignore the fact that there are people in need of action now. There have been many CFS/ME diagnosed patients, that have later been diagnosed and treated with other conditions. This shows the need for suitable protocol to be put in place now, so that patients facing the symptoms (akin to, or identical to M.E.) are given the best chance of recovery. "However, while those with Lyme Borreliosis exhibit many similar symptoms to CFS/ME the Group believes they are two separate afflictions." This is an obvious statement, and doesn't even need to be written. However it is also clear that when suspecting one, you should suspect the other. Again the group fails to make any recommendations for protocol. The report in general fails to present anything, except a summary of the information already widely known. When looking at an inquiry report such as this, it is only possible to conclude that they are intent on summarising the information given to them, and definitely not interested in actually conducting a proper inquiry with actual conclusions or recommendations. 4. Overall the inquiry seems to want more research into specific areas, whilst at the same time calling for another inquiry into these areas by "appropriately qualified professionals."

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This seems to invalidate not only the inquiry participants, but also the members of the group, by stating that they are not "appropriately qualified professionals". How can it be possible then for this under qualified group to make specific decisions about where the research should be targeted, and in the same document state that they aren't qualified to make that kind of decision. Let us be frank, the inquiry was given all the evidence they need to reach a conclusion. The inquiry should be justified in calling for research into specific areas. The inquiry could only reach that conclusion, given the research presented them. Why then, after some truly excellent presentations, has the inquiry failed to recognise the key areas of research needed. Why does the inquiry not recommend any of the research projects, previously submitted to the MRC by members of the presentation group, or even highlight the fact that all of the current promising research has been funded through charitable donation. 5. It's all there, yet nothing has been given the detail it deserves. Whilst the group must be commended on their wide-ranging choice of presenters, and participants in this inquiry, it is also clear that the 'group' have been unable to review and perhaps understand the information given to them. The report presented is clearly of a 'primary school' level, and fails to present the level and quality of information they have received. The whole report is lacking in detail, lacking in conclusions, and lacking in direction. If this 'group' hasn't realised that they 'must do better' (as I'm sure any teacher would comment), they hopefully soon will. I don't think I am being too harsh when saying this, as 12 months of inquiry has resulted in this poor outcome. I think an important indicator of just how useless this report (and I suspect this inquiry) will be, is the following entry: "3.0 The Science – Symptoms and Potential Causes - Dr Vance Spence Dr Spence presented on a number of biomedical areas that had shown a need for further investigation. These included blood flow to the brain, orthostatic intolerance and oxidation." Having seen Dr Spence's' presentation notes, and transcript, I think a little more detail would be called for. Especially as this report condenses a lot of very important work into two sentences, which are extremely vague. This would be like speaking of Einstein as "Some guy who invented a formula or two, mostly about relative things." It seems that the inquiry was given all the information needed to make some comprehensive decisions and conclusions, and they have instead decided to produce a very bad 'book report'. SUMMARY & CONCLUSIONS There are many flaws in the report, and probably the inquiry, however I think I can sum it up with this analogy from a child's school report card: *Inquiry spends a lot of time staring out of the window, and is disinterested in this subject. Inquiry's work is not at a good enough standard for an year eight pupil. The inquiry's latest efforts have been marked as a fail, as it is clear that

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despite efforts being made to teach inquiry, and supply inquiry with the best information, inquiry demonstrates little aptitude/willingness for academic work. I hope to see a greater improvement in the next term.* I think the report, and the conclusions of this inquiry, show that there is little hope of the current situation being taken seriously. This report further demonstrates the attitude of government process towards people with M.E. - they just don't care. There are many possible reasons why this inquiry has failed, and I'm sure many conspiracy theories abound. However, whatever the reasons for this failure, and whatever the motivations of the group to fail in their tasks, one fact still remains: People with certain medical symptoms are neglected by the government, and the NHS. This is human rights issue, and it will be acknowledged. Despite the efforts of the M.E. Community to provide the inquiry with information they can act upon, they have joined the ranks of the people who are determined to ensure the ongoing suffering for those labelled with CFS/ME. - ends –

Initial Thoughts – Gibson Inquiry From Dexhaven 27 November 2006 *********************

4. Consultation, consultation, consultation? 5 December 2006 From Suzy Chapman & Ciaran Farrell Consultation, consultation, consultation?
A couple of minutes into his keynote address to the 12th May Invest in ME Conference, Dr Ian Gibson, Chair of the Gibson Inquiry Group, stated: “We will have the Minister in...and ask them what their attitude is, and she will have her officials with her, so in that sense it’s going to be a formal inquiry - there’s going to be a report. I’m absolutely determined to get that report out before we break up at the end of July. We have a debate and we hit the media airwaves with it after we’ve got consultation from groups, like your group here.” A few minutes later, Dr Gibson said: “...I wish I had the inquiry results in front of me now, so you could say hang on a minute - that’s nonsense or whatever...” The Gibson Inquiry Report was published on 26th November, several months behind schedule. It was submitted to NICE at the eleventh hour, on 24th November - the final day of the NICE consultation period. The Report was submitted to NICE without any consultation between the Gibson Inquiry Group and the ME community over the content of the Report. One possible reason for this is that the Gibson Inquiry Group simply did not complete their Report in time to enable the contents to be discussed prior to its submission to NICE. Another reason relates to the delays and inefficiencies in the production of the Report and the

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unwillingness on the part of the Gibson Inquiry Group to be open, honest and transparent about the Report’s contents and prospective recommendations, and an unwillingness to be open to scrutiny and to constructive criticism on these issues. Having submitted their Report to NICE, the Report was then embargoed. It wasn’t published until two days later, by which time it was too late for the contents of the Report to be reviewed by those groups and individuals who had delayed submission of their own responses in the NICE consultation process, in the expectation that the Report would be published before the NICE consultation period closed. In fact, it wasn’t initially clear whether the Report had been finished in time to meet the NICE deadline. On 23rd November, the day before the Gibson Group submitted their Report, NICE had issued a statement of clarification concerning the submission of responses: “If stakeholders choose to make a submission other than through the web proforma, it will be read by the guideline developers but it will not receive a written response.” The Gibson Group are registered stakeholders. We have been led to understand that the Group chose not to submit its Report via the web proforma. It was therefore submitted to NICE in the knowledge that NICE would receive this Report on a ‘for information purposes only’ basis, which means that NICE does not have to comment on the contents of this document or respond to the Gibson Group - NICE can ignore the contents of this document if it chooses to do so. In doing so, the Gibson Group were fully aware of the implications of their actions. The Report was finally “launched” on Sunday, 26th November. We place the word “launched” in inverted commas since no Press Conference was held and there has been virtually no press coverage, although Dr Gibson, Chair of the Group, evidently had no trouble, last week, in securing coverage of his latest project - a call for another inquiry, this one into the possible dangers of Wi-Fi.* “Preview” copies of the embargoed Report were strategically seeded amongst selected recipients. Early responses, delivered under the guise of “summaries”, “highlights”, “digests” and “press releases” failed to provide either a balanced précis of the Report or a balanced evaluation of its worth and contents, or both. It is recognised that these “previewers” had deliberately capitalised upon their VIP status with the Gibson Inquiry Group in order to spin the content and status of the Gibson Report, as well as to make claims about the Report’s prospective ability to change the fortunes of the ME community at the highest level. In doing so, they intended to steer opinion in favour of the positive aspects of the Gibson Inquiry project, by cherry picking only those issues within the Report that suited their purpose and ignoring all other aspects of the Report’s contents, the status of the Inquiry and the problematic history of the Inquiry project to date. Another view is that these “previewers” sought to pull off a reputation-saving exercise for some of the high profile individuals associated with the process of this “inquiry”. The “previewers” news agenda was to seize the day and by doing so, get the ME community onside, and so naturally they did not wish to relinquish it when others raised critical voices about the Report, its contents, the status of the Gibson Inquiry, or their own actions. Therefore, they briefed against the publishing of any critical

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analysis and denigrated those who were criticising both the Report, itself, and the way in which these “previewers” had set about presenting the Report to the ME community. Now that other ME advocates, charity representatives and the ME patient community have had time to download a copy and to study this document, in full, balanced and considered critical analysis is emerging. It is clear that this Report does require very careful scrutiny for considerable concerns are now being expressed for the credibility, content and implications of this document and for the way in which this entire “inquiry” has been carried out. Do not rely solely on “summaries” and “digests” for an overview or for forming an opinion - download a copy of the full document at: http://www.erythos.com/gibsonenquiry/Report.html In an attempt to deflect attention away from areas of concern being raised by others, various excuses for the document’s ‘shortcomings’ have been proffered: lack of resources, Lord Turnberg, lack of scientifically qualified support staff. Very legitimate concerns for the content of the Report, as it stands, have been disparaged, with the implication that any perceived ‘weaknesses’ in the Report will likely be addressed by an “independent inquiry by appropriately qualified and independent experts”. This fails to reassure, since it is by no means certain that the Group’s call for a “proper inquiry by experts” will result in any full and proper inquiry, at all. In the meantime, the ME patient community has been presented with what many consider to be a most unsatisfactory and potentially damaging document. What opportunities are there for the ME community to engage in consultation with the Gibson Group now that this Report has been published? In her mailing of 29th November, Margaret Williams asserts: “Dr Gibson’s office has confirmed that all feedback will be considered, and the Group will determine the best way forwards in the light of the feedback received.” This unofficial statement, put out by Ms Williams, is at complete odds with the official statement issued by the Gibson Office, the previous day: The One Click Group: Gibson Office Statement 28 November 2006 17:27 “The Gibson Inquiry is not out for consultation/amendment. The aim of the report is to reflect the opinions of the Group after spending a year receiving and reviewing evidence.” We have therefore raised a number of questions with the Gibson Group which are appended. ****************************************** • http://comment.silicon.com/weeklyroundup/0,39024756,39164494,00.htm

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“Dr Ian Gibson MP, former chairman of the commons science and technology committee, has called on the Department of Health to invest some tax-payers’ money into finding out just how dangerous wi-fi is. Gibson says the Department of Health must set up an inquiry along the lines of the Stewart Report into mobile phone radiation.” ****************************************** Questions for Dr Ian Gibson, MP, Chair, Group on Scientific Research into ME: 05 December 2006 1] On 12th May 2006, towards the beginning of his keynote address to the Invest in ME Conference, Dr Gibson expressed a clear commitment to a consultation process being held after the Report had been completed and before it was released to the media. Would the Group please confirm if any form of consultation process was held with any of the patient groups, organisations or individuals who presented at the Oral Hearings, or with any of those who submitted written evidence or with any members of the wider ME community before the Report was released? What form, if any, did this consultation process take, when did it take place and which patient groups and/or individuals were consulted? 2] If no consultation process was held, prior to the document’s release, what were the reasons for this decision, whose decision was this, and when was this taken? 3] Would the Group please clarify whether any form of formal or informal consultation process is currently in progress and how, and by whom, this is being managed? If this is the case, how are any responses to be elicited via formal or informal consultation to be used a) in relation to the contents of the Report, as it stands; b) to inform the Group’s decisions about how to proceed? 4] On 12th May 2006, at the Invest in ME Conference, Dr Gibson expressed his desire that the forthcoming NICE guidelines should be fit for purpose. Dr Gibson has since informed the press, via the 26 November Press Release, that “These [NICE] guidelines have been widely criticised by patient groups and by the APPG on ME. Chair Des Turner described them in a meeting last week as ‘not fit for man nor beast’ Dr Ian Gibson MP of the Inquiry described them as ‘useless’.” Would the Group please confirm that the Gibson Report was tendered to NICE in a form other than on the web proforma and the basis on which NICE has accepted this document from them? If it is the case that the Report has been submitted on a ‘for information only’ basis, what was the reason for this decision, whose decision was this, and when was it taken? If it is the case, how does this course of action accord with Dr Gibson’s stated intention at the Invest in ME Conference that the findings and recommendations of the Report should help inform the process of the development of the NICE guidelines?

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5] On 12th May 2006, at the Invest in ME Conference, Dr Gibson spoke of the need to facilitate patient groups and individuals in influencing government departments. How does this statement accord with the Group’s decision to submit the Report to NICE and publish the Report “sight unseen” as it were, by the patient groups and individuals whose interests this Report represents, and with the Group’s statement, on 28th November, that “The Gibson Inquiry is not out for consultation/amendment.”? 6] It is understood that there are plans for the Report to be officially presented to government some time in the next couple of weeks. Given that this inquiry has been an unofficial inquiry and given that the Gibson Group is not a Select Committee, or an APPG, or any official House of Commons/Lords official committee, what impact does the Gibson Inquiry Group consider its Report and the recommendations made within it will have on government, Department of Health and other bodies, bearing in mind that the Inquiry Group cannot rely on the formal and official channels of processes and procedures which official committees have the right to expect? In what ways does the Group intend to use its Report to achieve implementation of its recommendations? 7] It is understood that a “meeting” or “reception” or “symposium” is to be held some time in the future to which those who gave evidence and presentations at the Oral Hearings are to be invited. Would the Group please reception/symposium is? clarify what the purpose of this meeting/

Has a date and venue been set for this proposed meeting/reception/symposium? Who does the Group intend to invite to this meeting/reception/symposium in addition to those who presented at the Oral Hearings? Will this meeting/reception/symposium be held in public so that members of the public can attend and participate? 8] Would Dr Gibson consider attending a meeting specifically set up in order to discuss the content of the Report with the ME community and to discuss how the Group intends to proceed? Suzy Chapman & Ciaran Farrell me.agenda@virgin.net ciaran@jfarrell58.freeserve.co.uk - ends -