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Conspiracy theories, myalgic encephalomyelitis and the guardians of science

Discussion in 'General ME/CFS News' started by filfla4, Jun 4, 2010.

  1. filfla4

    filfla4 Senior Member

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    Hi,

    I came across the following and thought it would be of interest. I'm afraid I don't know if or where it was published as I received it through my locall ME email support group. Clearly it's from 'Anglia ME Action' but doesn't appear to be on their website. Apologies if it's already been posted.

    CONSPIRACY THEORIES, MYALGIC ENCEPHALOMYELITIS AND THE GUARDIANS OF SCIENCE.

    3 JUNE 2010.

    We hear so much about conspiracy theories these days and many are rightly dismissed as such when one looks at the plethora of over-reductive fringe comment, New-Age lunacy, racialist scapegoating and dubious disinformation populating the internet. One should be very concerned however when the unjustified pejorative conspiracy theory term is employed against ME [1] patients & professionals doing nothing more than endeavouring to demonstrate the reality of biomedical evidence for ME, the documented vested financial interests of certain members of the 'CFS/ME' psychiatric lobby and skewed public health policy [2]. All is not well with ME politics, science and media coverage in the UK and such a conclusion is no conspiracy theory.

    Unjustified use of such dismissive rhetoric against legitimate concern is of course a long-standing and increasingly used establishment tool. It was, I believe, recently employed by Sarah Boseley in the UK Guardian Newspaper in her article of 13 May 2010 entitled: "The Trouble with ME". The trouble with Ms Boseley's coverage however is that it desperately needs to re-examine its facts and overall balance. Ms Boseley for example states, and I quote verbatim: "Listen to some or read the internet and you would think there is a massive organised conspiracy going on, led by the psychiatric community, but in conjunction with insurance companies and even government, to prove ME has no physical cause [3]". Ms Boseley however offers nothing other than assertion to refute a large and respected body of documented professional and patient evidence demonstrating an orchestrated campaign to do precisely that: substituting policy-based-evidence for evidence-based policy [4]. Indeed, even the Gibson Parliamentary Group on the Scientific Research into ME (GSRME) warned of and called for a full investigation of vested interests affecting official 'CFS/ME' policy, stating: "There have been numerous cases where advisers to the DWP have also had consultancy roles in medical insurance companies. Particularly the Company UNUM Provident. 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. The Group find this to be an area for serious concern and recommends a full investigation of this possibility by the appropriate standards body." [5].

    As for Ms Boseley's claim that patients believe they are being conspired against "by the psychiatric community" this is again misleading because, as any ME activist will confirm, there are are many members of the psychiatric profession, Professor Leonard Jason for example, who are far from happy with the minority and overly-influential group of psychiatrists in the UK known as the Wessely School.

    In an apparent attempt to lend support to this minority Wessely School of psychiatrists Ms Boseley clearly backs the hounds rather than the fox by attacking alleged patient (and many professionals?) conspiracy theorists - stating: "Most of the [patient] internet vitriol is directed at psychiatrist Professor Simon Wessely from King's College London, who believes there may be viral triggers for the disease but who pioneered the psychosocial therapies." What Ms Boseley fails to point out however is the substantial documented record of vitriolic, misleading, scientifically untenable and morally questionable rhetoric employed by Professor Wessely (and his associates) against ill and struggling ME patients [6]. It is however not just the patients who are abused, it is the scientific process [7] and, to quote just one senior international ME specialist's concerns regarding the Wessely School in this respect: "Supporters [of the psycho-social school] suggest that "ideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromes‟. Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of patient‟s symptoms, blame them for their illness and withhold medical treatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. [8]"

    Ms Boseley also sets the recent attempt to have the NICE 'CFS/ME' Clinical Guideline 53 quashed in the high court in a poor light: reiterating the Judge's comment that allegations against NICE were "unfounded". The truth is however that much of the claimants' case was not even put to the judge - including many professional/expert witness statements - and matters are still being pursued as a result of this injustice. Moreover, those supporting the case can hardly be described as conspiracy theorists when they include the likes of Dr Terry Mitchell, one of the UK NHS's longest serving hospital consultant ME/CFS specialists who stated: ""Until recently I was for many years the Consultant clinical lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service. Further to the query regarding the composition of the Guideline Development Group (GDG) for the NICE guidelines relating to ME/CFS. I confirm that I was hugely disappointed to find that the membership of the GDG did not include any of my clinical colleagues who over the years have seen large numbers of patients with ME/CFS. In my view this resulted in an unbalanced analysis as many who were on the GDG seemed to have strong leanings to the psychological / psychiatric approach to this devastating illness. ...I also have to say that I was astonished to discover that the systematic evidence review (authored by Bagnall et al York/CRD 2005), specifically commissioned to support the NICE ME/CFS guideline, omitted the serious concerns highlighted in their previous review of the same literature (JAMA 2001) that such evidence was seriously flawed [9]."

    Ms Boseley is also dismissive of the Whittemore Peterson Institute and Dr Judy Mikovits stating: "now the first euphoric blaze of [XMRV retroviral discovery in ME patients [10]] publicity is over, the WPI appears to have put up the barricades. Its press officer said Mikovits was not giving interviews and asked for a list of questions. The questions went unanswered." What Ms Boseley fails to point out is, as the ME community well knows, the WPI and Dr Mikovits have taken far more time to publicly answer post-study questions from the press, public and professionals than most other researchers ever do. Indeed, if Mikovits et al gave much more time to deal with such inquiries they would have little left with which to continue their all-important XMRV research - which, as is supposed to be cardinal in scientific refutation, has still not been properly examined in a fully replicative study and has emphatically NOT been disproved by peers: far from it.

    Going back to conspiracy theories in general, I was recently contacted by someone who is NOT an ME patient or specialist ME professional who wonders if the spectre of establishment eugenics and population reduction, under the auspices of global governance, are again on the rise and covertly contributing to skewed public health policy? He cited the facts, for example, that even the UK has an All Party Parliamentary Group on Global Governance (funded, in its own admission by One World Trust - see below) [11] and that the science advisor to USA President Obama, Dr John P Holdren, has, in writing, called for a planetary-wide regime to enforce population reduction - see below [12]. One hopes (!) that such conclusions are over-reductive. One so-called conspiracy theory however that I most certainly am prepared to put my name to is that the Guardian Newspaper and journalists like Sarah Boseley and the paper's most prominent science writer, Ben Goldacre (of the Institute of Psychiatry and whose former Ph.D supervisor is the liaison psychiatrist Professor Simon Wessely), are far from objective and fair when writing about the reality of ME science and politics. Indeed, a considered documented complaint against such alleged bias was made by Professor Malcolm Hooper & Stephen Ralph on 8th February 2010 and makes salutary reading [13].

    In conclusion, and in defence of my subscription to the so-called conspiracy theory concerning these Guardian journalists, I turn to matters with regard to the publication of the Mikovits/WPI XMRV retrovirus discovery published in the highly regarded journal "Science" last October. I have to say that I find it very instructive to compare The Guardian newspaper's coverage, or lack of it, during what Ms Boseley called "the first euphoric blaze of publicity" on the Mikovits/WPI discovery. It stands in stark contrast with the treatment by another mainstream UK broadsheet newspaper, The Independent, which gave front page leading article coverage to the XMRV discovery [14] and correctly and robustly stated in its editorial that: "Scientists could be on the brink of a breakthrough. We must hope that they are. That would at least go some way to compensating for the shameful manner in which sufferers were treated for so long by the medical profession [15]." Shameful indeed; and, as any internet search of the trivialising term "Yuppie Flue" will show, shameful treatment by many media professionals too.

    If they cannot give fair and balanced treatment of what they purport to cover, then in my humble opinion, the Boseley, Goldacre and other mainstream media "guardians" of journalistic and scientific objectivity are at best failing in a fundamental duty of their profession. I would therefore urge them to do better and read all of the recent material on the ME Action UK website [16] authored by Professor Malcolm Hooper et al. If however these journalists are deliberately "spinning" and propagandising against some of the most ill and vulnerable members of society, and the few outstanding and courageous professionals supporting them, then they are failing in their duty to their own humanity.

    Anglia ME Action.
    contact@angliameaction.org.uk

    - PERMISSION TO REPOST -

    ENDNOTES:

    [1] ME/Myalgic Encephalomyelitis is a physical/biomedical disease and correctly recognised as such by the World Health Organisation in its International Classification of Diseases - Tenth Revision - as a Neurological Disorder in section G9.3. (ICD-10-G93.3). See:
    http://www.who.int/classifications/icd/en/

    ME/Myalgic Encephalomyelitis is NOT deemed to be a psychiatric or psychosocially manageable illness by specialist professionals fully cognisant of the biomedical evidence base. Harvard Professor Anthony Komaroff, for example, clearly states:
    "...there are now over 4,000 published studies that show underlying biomedical abnormalities in patients with
    this illness. It‟s not an illness that people can simply imagine that they have and it‟s not a psychological illness. In my view, that debate, which has waged for 20 years, should now be over."
    [Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA Government CDC (Centers for Disease Control and Prevention) press conference on 3 November 2006.]
    http://www.cdc.gov/media/transcripts/t061103.htm

    [2] That there is ample evidence for the biomedical nature of ME, the financial vested interests of the 'CFS/ME' psychiatric lobby and skewed public 'CFS/ME' policy in the UK is eruditely demonstrated in two articles by Professor Malcolm Hooper et al entitled CORPORATE COLLUSION and MAGICAL MEDICINE: HOW TO MAKE A DISEASE DISAPPEAR available at:
    http://www.meactionuk.org.uk/Corporate_Collusion_2.htm
    http://www.meactionuk.org.uk/magical-medicine.htm

    [3] The trouble with ME, Sarah Boseley, The Guardian, Thursday May 13 2010:
    http://www.guardian.co.uk/society/2010/may/13/me-chronic-fatigue-syndrome

    [4] See, for example, the document entitled: PROOF POSITIVE? Evidence of the deliberate creation via social constructionism of "psychosocial" illness by cult indoctrination of State agencies, and the impact of this on social and welfare policy; Eileen Marshall & Margaret Williams, 30th August 2005. Available at:
    http://www.meactionuk.org.uk/PROOF_POSITIVE.htm

    [5] See page 30 of The Report of the UK Group on the Scientific Research into ME (GSRME), entitled: Inquiry into the Status of CFS/ME and Research into Causes and Treatment. November 2006. At the GSRME House of Commons Website:
    www.erythos.com/gibsonenquiry/index.html

    [6] See, for example, the document entitled: QUOTABLE QUOTES ABOUT ME/CFS Myalgic Encephalomyelitis / Chronic Fatigue Syndrome also known as PVFS (Post-Viral Fatigue Syndrome) sometimes known as CFIDS (Chronic Fatigue & Immune Dysfunction Syndrome) in the USA compiled by Margaret Williams on behalf of the charity Invest in ME - available at:
    www.meactionuk.org.uk/Quotable_Quotes_Updated.pdf

    [7] For growing examples of peer's concern with professional abuses of the scientific process motivated by vested interests and to put what has happened to ME patients in context PLEASE view the following:

    Professor Bruce Charlton Infostat, cargo-cult science and the policy sausage-machine: NICE, CHI and the managerial takeover of clinical practice:
    http://neuroscientist.com/bgcharlton/cargocult.html

    Professor Bruce Charlton Zombie Science A sinister consequence of evaluating scientific theories purely on the basis of enlightened self-interest, Medical Hypotheses (2008) 71 327-329, DOI: 10.1016/j.mehy.2008.05.018:
    http://medicalhypotheses.blogspot.com/2008/07/zombie-science-dead-but-wont-lie-down.html

    Film/Lecture (2009) Professor David Healy The Future of Medical Care:
    www.youtube.com/watch?v=X53r3zTQJNk

    Film/Lecture: Dr Jeff Schmidt author of Disciplined Minds:
    http://activistteacher.blogspot.com/2010/03/jeff-schmidt-author-of-disciplined.html

    Film - "Sicko" - Michael Moore (over optimistic account of UK state health & welfare provision but useful insights into medical insurance industry counterparts) at:
    www.michaelmoore.com/sicko/index.html

    Film - "The Corporation":
    www.thecorporation.com/

    [8] See: SHS Box on page 10 of (and indeed the whole document): Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners - An Overview of the Canadian Consensus Document by Professor Bruce M Carruthers and Dr Marjorie I Van de Sande. UK NHS Clinician Endorsed / UK A4 Format Version:
    http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf

    [9] Dr Terry Mitchell, Consultant Clinical Lead (CNCC) to one of the 12 national NHS specialist hospital ME/CFS centres - witness statement to the UK High Court - available at:
    www.angliameaction.org.uk/NICEJRdocs/Terry_Mitchell_WS.pdf

    Also note the comments of Dr Neil Abbot, of ME Research UK, who stated:
    "In my professional opinion, no rational reviewing body could have, on this rudimentary evidence base before it, recommended cognitive behavioural therapy (CBT) and graded exercise therapy (GET) as the main treatments for CFS/ME patients. In effect, the RCT evidence base relied upon by NICE to produce Guideline 53 was of poor quality compared with the evidence bases available for other illnesses, and NICE should not have attributed it the usual weight attributed to RCT evidence in the hierarchy of evidence." Dr Neil Abbot, High Court witness statement - available at:
    www.angliameaction.org.uk//NICEJRdocs/Neil_Abbot_MERUK_WS.pdf

    And also see: Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical Evidence Base. Comment on Section 3 of: The diagnosis, treatment and management of chronic fatigue syndrome (CFS)/(ME) in adults and children, Work to support the NICE Guidelines... Anne-Marie Bagnall, et al, Centre for Reviews and Dissemination, University of York. 2005. Professor Malcolm Hooper & Horace Reid, January 2006. From:
    www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

    [10] See: Judy A Mikovits et al; Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue
    Syndrome; DOI: 10.1126/science.1179052. Available at:
    www.sciencemag.org/cgi/content/abstract/1179052
    www.wpinstitute.org/xmrv/index.html

    [11] Information given on the UK "All Party Parliamentary Group on Global Governance" official Parliamentary website (dated 13 July 2009) is as follows:

    TITLE: All-Party Parliamentary Group for World Governance.
    PURPOSE: To promote democratic reform of the United Nations, global institutions and international law.
    OFFICERS: Chair - Mark Pritchard (Conservative); Vice-Chairs - Dr Nick Palmer (Labour), Joan Walley (Labour), Lord Archer of Sandwell (Labour), Jim Sheridan (Labour); Treasurer - Peter Bottomley (Conservative); Secretary - Tom Brake (Liberal Democrat).
    TWENTY QUALIFYING MEMBERS: Government Party - Dr Gavin Strang, Dr Nick Palmer, Joan Walley, Lord Archer of Sandwell, Baroness Whitaker, David Chaytor, Vera Baird, John Battle, Ann McKechin, Hugh Bayley. Main Opposition Party - Peter Bottomley, Cheryl Gillan, Sir Patrick Cormack, Lord Renton of Mount Harry, Nigel Evans, Anne McIntosh. Other (Liberal Democrat) - Baroness Tonge, Sir Menzies Campbell, Tom Brake, Lord Ashdown of Norton-sub-Hamdon
    CONTACT DETAILS FOR CORRESPONDENCE AND GENERAL ENQUIRIES ABOUT THE GROUP:
    Mr Mark Pritchard MP, House of Commons, London SW1A OAA. Tel: 020 7219 8494.
    BENEFITS RECEIVED BY GROUP FROM SOURCES OUTSIDE PARLIAMENT:
    One World Trust provides administrative assistance (organising meetings; maintaining membership list; secretarial support for AGMs; briefings to members).
    PAID EMPLOYMENT OUTSIDE PARLIAMENT OF STAFF WHO HOLD A PARLIAMENTARY PASS:
    Michael Hammer, Executive Director, One World Trust. Leticia Labre, Project Manager, One World Trust.
    DATE OF GROUP'S LAST REGISTERED ANNUAL GENERAL MEETING:
    13 July 2009.
    CATEGORY OF GROUP:
    On Approved List; All-Party Parliamentary Subject Group.
    WEBSITE ENTRY ADDRESS:
    http://www.publications.parliament.uk/pa/cm/cmallparty/register/memi589.htm

    [12] In his book "Ecoscience: Population, Resources, Environment" John P Holdren, USA President Obama's Science Advisor, called for a "Planetary Regime" to enforce totalitarian population control measures. In his own published words:

    Page 837: Compulsory abortions would be legal:
    "Indeed, it has been concluded that compulsory population-control laws, even including laws requiring compulsory abortion, could be sustained under the existing Constitution if the population crisis became sufficiently severe to endanger the society."

    Page 786: Single mothers should have their babies taken away by the government; or they could be forced to have abortions:
    "One way to carry out this disapproval might be to insist that all illegitimate babies be put up for adoptionespecially those born to minors, who generally are not capable of caring properly for a child alone. If a single mother really wished to keep her baby, she might be obliged to go through adoption proceedings and demonstrate her ability to support and care for it. Adoption proceedings probably should remain more difficult for single people than for married couples, in recognition of the relative difficulty of raising children alone. It would even be possible to require pregnant single women to marry or have abortions, perhaps as an alternative to placement for adoption, depending on the society."

    Page 787-8: Mass sterilization of humans though drugs in the water supply is alright as long as it doesn't harm livestock:
    "Adding a sterilant to drinking water or staple foods is a suggestion that seems to horrify people more than most proposals for involuntary fertility control. Indeed, this would pose some very difficult political, legal, and social questions, to say nothing of the technical problems. No such sterilant exists today, nor does one appear to be under development. To be acceptable, such a substance would have to meet some rather stiff requirements: it must be uniformly effective, despite widely varying doses received by individuals, and despite varying degrees of fertility and sensitivity among individuals; it must be free of dangerous or unpleasant side effects; and it must have no effect on members of the opposite sex, children, old people, pets, or livestock."

    Page 786-7: The government could control women's reproduction by either sterilizing them or implanting mandatory long-term birth control - Involuntary fertility control:
    "A program of sterilizing women after their second or third child, despite the relatively greater difficulty of the operation than vasectomy, might be easier to implement than trying to sterilize men.
    The development of a long-term sterilizing capsule that could be implanted under the skin and removed when pregnancy is desired opens additional possibilities for coercive fertility control. The capsule could be implanted at puberty and might be removable, with official permission, for a limited number of births."

    Page 838: The kind of people who cause "social deterioration" can be compelled to not have children:
    "If some individuals contribute to general social deterioration by overproducing children, and if the need is compelling, they can be required by law to exercise reproductive responsibilityjust as they can be required to exercise responsibility in their resource-consumption patternsproviding they are not denied equal protection."

    Page 838: Nothing is wrong or illegal about the government dictating family size:
    "In today's world, however, the number of children in a family is a matter of profound public concern. The law regulates other highly personal matters. For example, no one may lawfully have more than one spouse at a time. Why should the law not be able to prevent a person from having more than two children?"

    Page 917: We will need to surrender national sovereignty to an armed international police force:
    "If this could be accomplished, security might be provided by an armed international organization, a global analogue of a police force. Many people have recognized this as a goal, but the way to reach it remains obscure in a world where factionalism seems, if anything, to be increasing. The first step necessarily involves partial surrender of sovereignty to an international organization."

    Page 942-3: A "Planetary Regime" should control the global economy and dictate by force the number of children allowed to be born - Toward a Planetary Regime:
    "Perhaps those agencies, combined with UNEP and the United Nations population agencies, might eventually be developed into a Planetary Regimesort of an international superagency for population, resources, and environment. Such a comprehensive Planetary Regime could control the development, administration, conservation, and distribution of all natural resources, renewable or nonrenewable, at least insofar as international implications exist. Thus the Regime could have the power to control pollution not only in the atmosphere and oceans, but also in such freshwater bodies as rivers and lakes that cross international boundaries or that discharge into the oceans. The Regime might also be a logical central agency for regulating all international trade, perhaps including assistance from DCs to LDCs, and including all food on the international market."
    "The Planetary Regime might be given responsibility for determining the optimum population for the world and for each region and for arbitrating various countries' shares within their regional limits. Control of population size might remain the responsibility of each government, but the Regime would have some power to enforce the agreed limits."

    ...Extracts from: Ecoscience: Population, Resources, Environment - Paul R Ehrlich, Anne H Ehrlich & John P Holdren Publisher: W H Freeman & Co (Sd); 3rd edition (July 1978), ISBN-10: 0716700298 / ISBN-13: 978-0716700296.
    http://www.amazon.com/Ecoscience-Population-Environment-Paul-Ehrlich/dp/0716700298

    [13] See Stephen Ralph's & Professor Malcolm Hooper's complaint about persistent bad and misleading reportage in the UK Guardian Newspaper - at:
    http://www.meactionuk.org.uk/Guardian-Rusbridger-Final.htm

    [14] See the response to the Mikovits/WPI XMRV retrovirus discovery in the 9 October 2009 The Independent newspaper article entitled: Has Science Found The Cause of ME at the following link and note that the newspaper reported similar XMRV findings in blood samples of 500 ME patients from the UK:
    http://www.independent.co.uk/news/science/has-science-found-the-cause-of-me-1799944.html

    [15] The Independent 9 October 2009 editorial article entitled: Chronic Neglect - available at:
    http://www.independent.co.uk/opinion/leading-articles/leading-article-chronic-neglect-1799885.html

    [16] ME Action UK - The Main Website and Documentary Archive of UK Biomedical ME/CFS Campaigning:
    http://www.meactionuk.org.uk/

    - ENDS -


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  2. Tammie

    Tammie Senior Member

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    Woodridge, IL
    this is a great article...... but oh my gosh, the info after (holdren's book reference material) is really scary sh!t....unbelievable that he is in a position of power in the USA
     

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