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Science Media Centre: "more than public relations"

Discussion in 'General ME/CFS News' started by oceanblue, Apr 4, 2012.

  1. Wildcat

    Wildcat Senior Member

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    Revolutionary Communist Party/Living Marxism/Spiked/Science Media Centre


    George Monbiot The Guardian

    Invasion of the Entryists

    December 9, 2003

    By George Monbiot. Published in the Guardian 9th December 2003
    http://www.monbiot.com/2003/12/09/invasion-of-the-entryists/


    One of strangest aspects of modern politics is the dominance of former left-wingers who have swung to the right. The neo-cons pretty well run the White House and the Pentagon, the Labour party and key departments of the British government. But there is a group which has travelled even further, from the most distant fringes of the left to the extremities of the pro-corporate libertarian right. While its politics have swung around 180 degrees, its tactics entering organisations and taking them over appear unchanged. Research published for the first time today suggests that the members of this group have colonised a crucial section of the British establishment.

    The organisation began in the late 1970s as a Trotskyist splinter called the Revolutionary Communist party. It immediately set out to destroy competing oppositionist movements. When nurses and cleaners marched for better pay, it picketed their demonstrations.(1) It moved into the gay rights group Outrage and sought to shut it down.(2) It tried to disrupt the miners strike,(3) undermined the Anti-Nazi League (4) and nearly destroyed the radical Polytechnic of North London.(5) On at least two occasions RCP activists physically attacked members of opposing factions.(6)


    In 1988, it set up a magazine called Living Marxism, later LM. By this time, the organisation, led by the academic Frank Furedi, the journalist Mick Hume and the teacher Claire Fox, had moved overtly to the far right. LM described its mission as promoting a confident individualism without social constraint.(7) It campaigned against gun control,(8) against banning tobacco advertising (9) and child pornography,(10)and in favour of global warming,(11) human cloning and freedom for corporations. It defended the Tory MP Neil Hamilton (12) and the Bosnian Serb ethnic cleansers.(13) It provided a platform for writers from the corporate thinktanks the Institute for Economic Affairs (14) and the Center for the Defense of Free Enterprise.(15) Frank Furedi started writing for the Centre for Policy Studies (founded by Keith Joseph and Margaret Thatcher) and contacting the supermarket chains, offering, for 7,500, to educate their customers about complex scientific issues. (16)


    In the late 1990s, the group began infiltrating the media, with remarkable success. For a while, it seemed to dominate scientific and environmental broadcasting on Channel 4 and the BBC. It used these platforms (Equinox, Against Nature, Attack of the Killer Tomatoes, Counterblast, Zeitgeist) to argue that environmentalists were Nazi sympathisers who were preventing human beings from fulfilling their potential. In 2000, LM magazine was sued by ITN, after falsely claiming that the news organisations journalists had fabricated evidence of Serb atrocities against Bosnian Muslims. LM closed, and was resurrected as the web magazine Spiked and the thinktank the Institute of Ideas.


    All this is already in the public domain. But now, thanks to the work of the researcher and activist Jonathan Matthews (published today on his database www.gmwatch.org), what seems to be a new front in this groups campaign for individuation has come to light. Its participants have taken on key roles in the formal infrastructure of public communication used by the science and medical establishment.


    Let us begin with the Association for Sense About Science (SAS), the lobby group chaired by the Liberal Democrat peer Lord Taverne, and whose board contains such prominent scientists as Professor Sir Brian Heap, Professor Dame Bridget Ogilvie and Sir John Maddox.(17) In October it organised a letter to the Prime Minister by 114 scientists, complaining that the government had failed to make the case for genetic engineering.(18) In response, Tony Blair told the Commons that he had not ruled out the commercialisation of GM crops in Britain.(19)


    The phone number for Sense About Science is shared by the publishing house Global Futures.(20) One of its two trustees is Phil Mullan,(21) a former RCP activist and LM contributor who is listed as the registrant of Spiked magazines website.(22) The only publication on the Global Futures site is a paper by Frank Furedi, the godfather of the cult.(23) The assistant director of Sense About Science, Ellen Raphael, is the contact person for Global Futures.(24) The director of SAS, Tracey Brown, has written for both LM and Spiked and has published a book with the Institute of Ideas (25): all of them RCP spin-offs. Both Brown and Raphael studied under Frank Furedi at the University of Kent, before working for the PR firm Regester Larkin,(26) which defends companies such as the biotech giants Aventis CropScience, Bayer and Pfizer against consumer and environmental campaigners.(27) Browns address is shared by Adam Burgess, also a contributor to LM. LMs health writer, Dr Michael Fitzpatrick, is a trustee of both Global Futures and Sense About Science.(28)


    SAS has set up a working party on peer review, which is chaired and hosted by the Royal Society. One of its members is Tony Gilland,(29) who is science and society director at the Institute of Ideas, a contributor to both LM and Spiked and the joint author of the proposal Frank Furedi made to the supermarkets.(30) Another is Fiona Fox, the sister of Claire Fox, who runs the Institute of Ideas. Fiona Fox was a frequent contributor to LM. One of her articles generated outrage among human rights campaigners by denying that there had been a genocide in Rwanda.(31)


    Fiona Fox is also the director of the Science Media Centre, the public relations body set up by Baroness Susan Greenfield of the Royal Institution. It is funded, among others, by the pharmaceutical companies Astra Zeneca, Dupont and Pfizer.(32) Fox has used the Science Media Centre to promote the views of industry and to launch fierce attacks against those who question them. She ran the campaign, for example, to rubbish last years BBC drama Fields of Gold.(33)


    The list goes on and on. The policy officer of the Genetic Interest Group, which represents the interests of people with genetic disorders, is now John Gillott,(34) formerly science editor of LM and a regular contributor to Spiked. The director of the Progress Educational Trust, which campaigns for research on human embryos, is Juliet Tizzard, a contributor to LM, Spiked and the Institute of Ideas. Gillott and Tizzard also help to run Genepool, the online clinical genetics library.(35) The chief executive of the British Pregnancy Advisory Service is Ann Furedi, the wife of Frank Furedi and a regular contributor to LM and Spiked. Until last year she was communications director for the Human Fertilisation and Embryology Authority. The coordinator of the Pro-Choice Forum, which publicises abortion issues, is Ellie Lee, a regular writer for LM and Spiked and now series editor for the Institute of Ideas.


    Is all this a coincidence? I dont think so. But its not easy to understand why it is happening. Are we looking at a group which wants power for its own sake, or one following a political design, of which this is an intermediate step? What I can say is that the scientific establishment, always politically naive, appears unwittingly to have permitted its interests to be represented to the public by the members of a bizarre and cultish political network. Far from rebuilding public trust in science and medicine, this groups repugnant philosophy could finally destroy it.

    www.monbiot.com


    References:
    1. Nick Cohen, 12th August 2002. The rebels who changed their tune to be pundits. New Statesman.

    2. pers. comm. with two members of Outrage.

    3. pers comm with Mark Osborn, Workers Liberty.

    4. Nick Cohen, ibid.

    5. pers comm with a former senior academic at the Polytechnic of North London.

    6. Keith Flett, 24th October 1998, letter to the Guardian; Nick Cohen, ? October 1998. Boardroom Revolutionaries. The Observer.

    7. Frank Furedi November 1995. Rescuing the subject. Living Marxism issue 84.

    8. Mark Ryan, 16th August 1996. Holding a gun to our heads. Living Marxism online. http://www.informinc.co.uk/LM/discuss/commentary/
    08-16-96-GUNS.html ; Debate: Will Gun Control Make Society Safer? 18 February 1997. Living Marxism online.

    9. Cheryl Hudson, November 1997. Who killed the Marlboro man?
    LM issue 105.

    10. Andrew Calcutt, April 1994. Exposed: computer porn scandal in commons Living Marxism issue 66; David Nolan, 3rd October 1996. Im Against Censorship, But http://www.informinc.co.uk/LM/discuss/commentary/10-03-96-SAFETY.html.
    Living Marxism online.

    11. Peter Sammonds, April 1995. Wouldnt a bit of global warming be a good thing? Living Marxism issue 78; John Gillott and Dominic Wood, April 1995 Whos afraid of global warming? Living Marxism issue 78; Peter Sammonds, December 1997/January 1998. A Warming Thought. LM issue 106.

    12. James Heartfield, March 1998. Cash, questions and answers. LM issue 108.

    13. Thomas Deichmann, February 1997. The picture that fooled the world. LM issue 97; Joan Phillips, September 1992. The invention of a Holocaust. Living Marxism issue 47; Thomas Deichmann, July/August 1997. I accuse. Interview with Radovan Karadzic. LM issue 102.

    14. Roger Bate, May 1998. Scientists cool on global warming. LM issue 110; Roger Bate, February 1998. A risk-free environment is bad for our health. LM issue 107.

    15. Ron Arnold, March 1998. A Darker Shade of Green. LM 108.

    16. Frank Furedi, 1999. Courting Mistrust: The hidden growth of culture of litigation in Britain, Centre for Policy Studies, London.

    17. Frank Furedi and Tony Gilland, 1998. Research Proposal: The impact of safety panics on the debate about the use of GMOs in food production. Sent to the superstores, Food and Drink Federation and National Farmers Union by Tony Gilland, from 23 Roslyn Road, London.

    18. http://www.senseaboutscience.org.uk/about.htm

    19. From Professor Derek Burke and others, 30th October 2003. Letter to Tony Blair.

    20. The Prime Minister, 10th November 2003. Commons Hansard Written Answers, Column 14W.
    http://www.publications.parliament.uk/pa/cm200203/cmhansrd/cm031110/text/311

    21. From the Charity Commission for England and Wales.

    22. spiked-online.com registration details are available from
    http://www.networksolutions.com/en_US/whois/index.jhtml
    which gives the owner as Phil Mullan of 39 Whitfield Street, London.

    23. http://www.futureproof.org/copyright.htm

    24. From the Charity Commission for England and Wales.

    25. Tracey Brown, 2002, in Ellie Lee (Editor): Compensation Crazy: Do We Blame and Claim Too Much? Hodder Arnold, with the Institute of Ideas

    26. http://web.archive.org/web/20010309203835/www.regesterlarkin.com/traceybrown.htm,
    http://web.archive.org/web/20020630233947/http://www.regesterlarkin.com/rl/staff_eraphael.shtml

    27. http://www.regesterlarkin.com/rl/clients.shtml

    28. Charity Commission for England and Wales; http://www.senseaboutscience.org.uk/about.htm

    29. Andy Rowell and Jonathan Matthews, April 2003. Strange Bedfellows. The Ecologist.

    30. Frank Furedi and Tony Gilland, 1998, ibid

    31. Fiona Fox, December 1995. Massacring the Truth in Rwanda. Published under the assumed name Fiona Foster in Living Marxism.

    32. http://www.sciencemediacentre.org/aboutus/fundingsystem.html

    33. Science Media Centre, press release 31 May 2002. Scientists say GM drama is an X-Files Fantasy
    http://www.sciencemediacentre.org/rismc/newsdetail.jsp?cat=5&nid=12/; Ronan Bennett, 2nd June 2002. The conspiracy to undermine the truth about our GM drama. The Observer; Alan Rusbridger, 7th June 2002. Fields of Ire. The Guardian

    34. http://www.gig.org.uk/team.htm

    35. http://www.nelh.nhs.uk/GenePool/

    .
    Roy S, Enid, Jarod and 1 other person like this.
  2. Merry

    Merry Senior Member

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    This is heartening, Mark, that you have been keeping track of the honeybee story. Thanks for the links.

    A few minutes ago I saw that Wildcat had written a long post that I wanted to read, but now, weirdly, I can't get to the last page. Edit: Oh, here I am.

    Thanks so much, Wildcat. Just what I was looking for.
    Wildcat likes this.
  3. Esther12

    Esther12 Senior Member

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    I've got no TV!

    Lost a reply to this, but it all looks interesting. Thanks for the info.
  4. Esther12

    Esther12 Senior Member

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    I had trouble too. Seems fine now.
  5. Mark

    Mark Acting CEO

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    Sofa, UK
    Yes, we just had to restart the server, it seems OK now...
  6. alex3619

    alex3619 Senior Member

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    Hi Mark, there are close parallels here with what is happening in the somatization model of CFS and ME. The sentence I bolded is not dissimilar to the design of studies using CBT/GET: design a study methodology to give you the results you want and not show the problem. The only question is why this is so. Its very tempting to assign motives but very hard to prove them, and there are issues that this kind of problem is endemic in psychiatry, its not isolated to ME and CFS and any individual researcher. Like with the SMC we just happen to see it as certain individuals causing most of the issues (which I do not disagree with) because that is what we have investigated. The why of it is much more complicated.

    This methodology issue and the issue with the SMC is a divergence from the current views on philosophy of science. They are not sound practices, just persuasive ones. Explaining the evidence and developing robust models is overshadowed by a rush to tell a particular story and achieve their own goals.

    Bye, Alex
    Enid likes this.
  7. Mark

    Mark Acting CEO

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    Quite so Alex - what is striking is that this is transparently Bad Science whichever way you look at it. Investigating the effect of pesticides on bees in a lab environment is just not a smart experiment to run if you want to logically - scientifically - examine the question of whether the pesticides are responsible for CCD. The pesticides are in effect in the wild, and the potential mechanism of the potential effect is completely unknown. So if you really, honestly, seriously wanted to answer the question, as a scientist, you would design an experiment in the wild comparing beehives in environments surrounded by pesticides and beehives in pesticide-free environments. When this was done, the results were stark and dramatic.

    Now it often strains credibility, in these situations, to give the scientists involved the benefit of the doubt and conclude that they are idiots. When the evidence was suggesting that it was specifically navigation that had been impaired, and when that specific hypothesis had been explicitly advanced, choosing to conduct experiments which will not test that hypothesis but will appear to show that the pesticides are harmless is suspicious behaviour, to say the least. But whether scientists repeatedly do this sort of thing intentionally or as a result of blindspots in their thinking is an open question - personally, I think its a mixture of both, but most of those involved are unaware of any deliberate manipulation that's involved. I guess the crucial issue here is the details of what experiments are performed - and which are funded - rather than how well they are done. Excellent scientists can do excellent work, but if the precise experiments that would show the most significant results cannot get funding, those scientists cannot easily see how they are being manipulated.

    And yes, this whole pattern does indeed very closely parallel the design of CBT/GET studies into CFS, and here again it is impossible to tell whether those concerned are doing this merely because they are blinded to their own biases in tending to want to design experiments to confirm their own theories, or whether they are more consciously manipulating science, but it is Bad Science whichever way you look at it.

    The core of it really is: When you design an experiment, are you honestly purely motivated by trying to find an answer to a question to which you don't know the answer and about which you are genuinely agnostic and genuinely want to know the truth, whatever it may be? Or are you trying to prove something to the world which you already believe to be true, or which you want people to believe to be true for some reason? That seems like it might be a pretty good criterion for what constitutes good and bad science, and good and bad scientists.
    Enid and Jarod like this.
  8. Wildcat

    Wildcat Senior Member

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    Spiked Magazine 17 January 2002

    'Spiked' Magazine was Formerly 'Living Marxism' (LP)

    Spiked Magazine's GP Dr Michael Fitzpatrick:

    Living Marxism's (LM) health writer, Dr Michael Fitzpatrick, is a trustee of both Global Futures and Sense About Science.



    'ME: the making of a new disease'

    'Who benefits from the recognition of ME as a 'genuine illness'?'

    http://www.spiked-online.com/articles/00000002D3B6.htm


    'Myalgic Encephalomyelitis (ME) - also known as Chronic Fatigue Syndrome (CFS) - must be recognised as a genuine illness, according to a working group reporting to the Chief Medical Officer, Professor Sir Liam Donaldson (1). The report insists that doctors must provide 'prompt, authoritative diagnosis', appropriate advice and early access to treatment (2).


    'This is a real disease affecting real people' declared Professor Donaldson, enthusiastically endorsing the ME report. But the appearance of consensus behind the proclamation of a new disease is deceptive. Over the three years of its existence, the working group was riven by disagreements; a total of 10 original members, including four psychiatrists and a public health consultant, resigned before the report was published. And there remains confusion about ME throughout the rest of the medical profession - for good reason.


    I was delighted at Christmas to receive a card from a long-standing patient with ME. Over the years I have done little enough to alleviate her debilitating symptoms, but we have met periodically to review progress as I have arranged referrals and prescribed various medications. We have also discussed the wider controversies around ME. The last time I saw her she said, 'I know you don't believe in ME, but it helps to talk about it'.


    As it happens, I can't recall ever saying that I don't believe in ME - though I did express some scepticism about the value of this diagnostic label. In future, I will have to be more careful. According to Chris Clark, chief executive of Action for ME and a member of the key group, 'what should and will happen the day after publication [of the report], if a doctor uses the immortal words "I don't believe in ME", the patient has the power to say "I'm very sorry, but the Chief Medical Officer says that it does exist and here's the evidence"' (3). If GPs ignore or refuse to follow the new official guidelines, continues Mr Clark, they could be liable for disciplinary action.


    The new official policy on ME is the result of a consensus forged between ME activists and a small number of medical authorities. This consensus emerged following the exclusion of leading psychiatrists and other experts in this field. Endorsed by the Chief Medical Officer, this policy is now to be imposed on the medical profession as a whole. Following the scandals over hospital practices at Bristol and Alder Hey (4), the CFS/ME report provides another example of the government tactic of forming alliances with unrepresentative and unaccountable voluntary organisations, and using them as a stick with which to beat the medical profession into line with New Labour policy.


    To grasp the likely consequences of this dogmatic and authoritarian approach in one area of medical practice, we need to look more closely at some of the controversies that dogged the working group.


    ME: What's in a name?


    The term 'benign myalgic encephalomyelitis' was first coined in response to an outbreak of muscle pain and fatigue among nurses and other staff at the Royal Free Hospital in London in 1955. Though the term implies inflammation of the brain and spinal cord, no such pathology was ever identified. This episode was subsequently widely regarded as an epidemic of mass hysteria, and no infectious cause was ever established.


    In the 1980s the term, abbreviated to 'ME', came to be applied to isolated, but increasingly numerous, cases of profound and prolonged fatigue, associated with muscle pain and malaise, and a wide range of other symptoms. Because some patients complained that their symptoms followed flu-like illnesses, the term 'post-viral fatigue syndrome' was also used. The fact that the majority of early sufferers from ME were middle-class professionals, predominantly young women, was reflected in the pejorative sobriquet 'yuppie flu'.

    I
    n the course of the 1990s, medical opinion shifted towards the term 'chronic fatigue syndrome', which emphasised the predominant symptom without making any assumptions about the cause of the condition or its pathology. A report by an earlier working group of the royal colleges of physicians, psychiatrists and GPs in 1996 was boldly entitled 'Chronic Fatigue Syndrome'. It explicitly rejected the term ME on the grounds that it 'erroneously endorses the existence of a specific pathological process for which in the context there is no evidence' (5).


    The origins of the current report lie in the dissatisfaction of organisations such as Action for ME and the ME Association, which are supported by some sufferers and their families and carers, with the 1996 report and other similar accounts. Many ME activists feel that the term 'fatigue', a familiar synonym for 'tiredness', fails to reflect the profundity of their symptoms. Some also cling to the conviction that their symptoms are the result of some infectious agent or immunological disorder, and thus favour a label which implies such an aetiology (though exhaustive researches have failed to confirm this).



    The CFS/ME compromise surrenders medical authority to irrationality

    No doubt, like generations of doctors, some enjoy the legitimacy conferred by a polysyllabic Latinate term, even though - perhaps because - it mystifies rather than clarifies the underlying condition. In response to representations along these lines, the new working group was established in July 1998.


    The CFS/ME Working Group Report presents the adoption of the formula 'CFS/ME' as a compromise between the medical preference for CFS and the patients' groups' preference for ME. While approving the continuing quest - at an international level - for a consensus on definitions and terminology, the report proposes 'CFS/ME' as an 'umbrella term', an approach it believes 'ensures as far as possible an inclusive approach' (6).


    In reality, the approach reflected in this compromise ensured the inclusion of the ME lobby and the CMO, and the exclusion of the broad body of medical and psychiatric opinion represented by the 1996 report (and reflected in the resignations from the current working group).


    The CFS/ME compromise reflects a surrender of medical authority to irrationality. The scale of this capitulation is apparent when Professor Donaldson claims that CFS/ME should be classified together with conditions such as multiple sclerosis and motor neurone disease (7). It is a measure of the perversity of this discussion that ME activists should be reassured by the identification of their condition with diseases which are progressive and often fatal (neither of which is true for CFS/ME). Furthermore, both multiple sclerosis and motor neurone disease have distinctive clinical features and pathological processes which can be confirmed by investigations (neither of which is the case for CFS/ME).


    From my perspective as a GP, the umbrella term CFS/ME appears to conflate two distinct groups of people suffering from fatigue. ME is usually (in my surgery, always) a self-diagnosis: somebody comes in, sits down and says 'I think I've got ME, doc'. This is what we in general practice call a 'heartsink' encounter. Once a patient has accepted the ME label, it seems to become a self-fulfilling prophecy and it is very difficult to deflect them from a course of prolonged incapacity, with all its adverse consequences.


    Though there are always exceptions, such patients tend to be young, female and middle class, teachers, nurses, social workers. In more recent years, ME has made its appearance in the children of the above, and, unlike wealth, it has shown a tendency to trickle down into less affluent sections of society.


    Embarrassed by the Guardian-reader image of ME, researchers in the field have embarked upon surveys of the general population, inquiring about fatigue, malaise, etc. These surveys have, not surprisingly, revealed significant levels of such complaints in all social classes, age groups and ethnicities. This allows the ME lobby to deflect criticisms of its socially exclusive character with claims about the universality of CFS.


    The activists insist that the perception of 'yuppie flu' has arisen simply because middle-class people are more likely to present such symptoms to doctors and gain access to specialist clinics. The notable effectiveness of the ME lobby undoubtedly reflects its base of middle-class supporters, including a substantial body of health professionals, as well as journalists and others well-connected to the political process.


    The result of conflating patients who subjectively identify themselves as sufferers from ME with those who simply respond positively to questions about whether they feel tired all the time is that the specific features of the emergence of ME are effaced. There can be little doubt that researchers asking pointed questions could have uncovered significant levels of tiredness at any time over the past century. But it was only in the 1980s that people started coming to their doctors in large numbers complaining that they thought they had ME.



    The effectiveness of the ME lobby reflects its middle-class base

    It seems likely that the sociological background of these patients, their class and gender, their educational and occupational experiences, their concentration in public service professions at a time of wider social and political crisis might have some bearing on this remarkable epidemic. Under the CFS/ME umbrella, however, the socially and historically distinctive features of the condition remain in the shadows.



    In her 1997 book Hystories, the American literary critic Elaine Showalter drew a parallel between the prevalence of hysteria in nineteenth century Europe and America and the phenomenon of ME in the contemporary West (8). Though this, and other studies, have tended to identify ME with Victorian 'neurasthenia' and other past manifestations of fatigue, as though the same condition were simply recurring under different guises, a historical approach has the merit of challenging the myopic focus on the increasingly implausible quest for noxious viruses or environmental toxins.


    Instead, this approach raises questions, such as - why these people?, why now?, why these particular symptoms? - in a way which has generally been ignored in the controversies around ME. (One unfortunate consequence for Showalter was that, having angered the ME lobby, she attracted hostile protests wherever she travelled to promote her book - prompting her observation that when it came to polemics, they showed little sign of fatigue.)



    Trials and tribulations

    The prevailing medical consensus about the treatment of patients with CFS was promulgated in the form of a systematic review of interventions, carried out by two independent teams (one in York, UK the other in San Antonio, Texas, USA) and published in the Journal of the American Medical Association in September 2001 (9).


    While noting the poor quality of much research in this field and the confusion surrounding case definitions, outcome measurements, and other matters, this review concluded that only two forms of treatment - graded exercise therapy (GET) and cognitive behavioural therapy (CBT) - could be shown to be modestly effective. Graded exercise is 'a form of structured and supervised activity that aims for gradual but progressive increases in aerobic activities such as walking or swimming'; and 'renablement on the cognitive behavioural model aims to empower patients to identify, understand and modify their belief systems and behaviours, to maximise their own functioning and wellbeing with support and guidance from the therapist'.


    In a widely publicised commentary on this review, Professor Simon Wessely, one of Britain's leading researchers into CFS, declared that 'the time has come for clinicians who wish to help their patients with CFS, and for activists who truly represent the interests of patients, to begin by welcoming this reviewand determine the direction for coordinating their efforts' (10).

    An
    ticipating a hostile response to the review from the ME lobby, Wessely feared that the authors of this report would join others, like himself, who had been 'vilified', 'abused and intimidated' for 'producing research unpopular to powerful special interests'. He warned that such a response would 'hasten the disengagement of some healthcare professionals who have been active and involved in CFS clinical care and research for many years'.


    The publication of the current report on CFS/ME confirmed the prescience of Wessely's warnings. It appears that the issue that finally led to the departure of around one third of the 'key group' was the decision to endorse the 'energy management strategy' of 'pacing' in addition to GET and CBT (11). Pacing, according to the report, 'is based on the "envelope" or "glass ceiling" theories of CFS/ME, which suggest that energy is finite and limited, and that the best way for a patient to manage their illness is to live within this envelope'. As the report concedes, 'the underlying principle might be viewed as being somewhat contradictory to the underlying principles of more active rehabilitative strategies'.


    This approach is appealing to some ME activists, who hold that the underlying disease process in which they believe may not be responsive to graded exercise and may indeed be exacerbated by it. On the other hand, many clinicians fear that pacing could perpetuate the condition by encouraging prolonged and debilitating inactivity.


    This is how the report sums up its case for recommending pacing: 'Although the research evidence base for this therapy is very limited, many voluntary organisations and a proportion of clinicians consider that pacing has an important place to play in the management of CFS/ME.' (Some would argue that the research base is non-existent and the proportion of clinicians favouring pacing very small.) This formulation also contradicts the principle set out in the introduction to the report: 'to provide advice on clinical management that reflects the importance of individualised, holistic, care and tailoring approaches based on the best possible evidence to reflect particular needs of the patient and their carers' (12).




    Many clinicians fear that pacing could perpetuate the condition

    The best possible evidence would, according to the York/Texas teams, support an official recommendation of only GET and CBT, a view upheld by those who resigned from the working group. It therefore becomes clear that the decisive factor for the working group is not evidence, but the unsubstantiated convictions of the ME organisations and those clinicians who go along with them.



    A clash of models

    The rival factions in the CFS/ME wars are mobilised around two conflicting theories of the illness, designated in the report as the biomedical and the biopsychosocial models.


    From the biomedical perspective, CFS/ME is 'a condition like many other medical conditions where illness results from a specific pathological defect in physiological functioning, mediated at organ, tissue, cellular and/or molecular level, by as yet undefined mechanisms' (13). The biopsychosocial model, by contrast, 'suggests that once an illness has started, its expression is affected by beliefs, coping styles, and behaviours, while consequential physiological and psychological effects act in some ways to maintain and/or modify the disease process'.


    The report's endorsement of the biomedical model marks a significant advance in the medicalisation of the problems of individuals in society and a retreat from any attempt to confront such problems in social terms. It upholds the sort of crude dualism of mind and body from which modern medicine has been gradually emerging over the past 300 years.


    Worse, it implicitly endorses the stigmatisation of mental illness, by dogmatically repudiating any recognition of the role of psychological factors in the genesis of physical symptoms.


    The biomedical model has proved highly productive where distinctive patterns of anatomical, physiological or biochemical abnormality have been identified: that is to say in the diagnosis and treatment of diseases. Where it has not proved of much value is in advancing the understanding of physical symptoms in individuals in whom no recognised form of pathology can be discovered.


    Yet the redefinition of illness as disease has become the dominant medical response to the problem of unexplained physical symptoms, of which fatigue is only one example. Others complaining of symptoms for which no cause can be found are offered labels such as 'irritable bowel syndrome', 'repetitive strain injury', 'fibromyalgia', 'food allergy', or even 'multiple chemical sensitivity'. The proliferation of diagnostic categories in psychiatry reflects the tendency to apply disease labels to a wider range of social behaviour.



    Even when they are not, like ME, obfuscatory, the new diagnostic labels are descriptive rather than explanatory. Far from opening up the prospect of treatment, they merely confirm the hopelessness of the sufferer. The labels validate and legitimise the expression of incapacity in medical terms. Whereas diagnoses in the past suggested the limited character of the condition, the new labels imply disorders that are unrestricted in the scope of the symptoms to which they give rise and in the duration of their effects. Post-traumatic stress disorder or recovered memory syndrome, for example, can be expressed in the widest variety of symptoms, which may arise long after the traumatic events believed to have triggered them.



    The depersonalised character of traditional diagnoses allowed the sufferer to objectify the condition as something 'out there'. By contrast, a diagnosis like CFS/ME is inescapably personal in character. Every sufferer exhibits a different range of symptoms, and there is no way of objectively confirming or monitoring the course of the illness.


    The net effect of the dramatic expansion of the range of medical diagnosis is that, instead of conferring strength on the patient, it is likely to intensify and prolong incapacity. The proliferation of such diagnoses and the tendency to apply them to increasing numbers of people reflects a profound demoralisation of society and a crisis of subjectivity.




    Disease labels are applied to a wider range of social behaviour

    Anybody who criticises the biomedical model of ME is caricatured by its advocates as believing that ME does not exist or that 'it is all in the mind'. Yet anybody who has worked in primary healthcare over the past 20 years knows patients who have experienced prolonged and incapacitating episodes of fatigue, together with a range of other symptoms. Whether or not they have CFS or ME, their physical symptoms are all too real. Whatever role the mind plays in the defects of the body, its incapacity is readily apparent.


    Advocates of the biopsychosocial model have attempted to develop a way of understanding symptoms of chronic fatigue that takes account of psychological as well as physical factors. Their approach to treatment is commonsensical rather than ideological, leaving aside controversies about aetiology and trying to discover practical interventions that can be shown to have some effect in alleviating symptoms.


    Both the biomedical and the biopsychosocial approaches evade the role of social factors in the genesis of CFS/ME. Proponents of the biomedical model do this on principle because for them the biological determination of the condition is a matter of faith. For advocates of the biopsychosocial approach, this is partly a pragmatic decision, to avoid further antagonising the ME lobby, and partly a result of the narrowly psychological focus of much work on CFS.


    Yet it is crucial to grasp the wider social and political influences that have contributed to the emergence of CFS/ME if we are to achieve a deeper understanding of this condition - and to devise more effective ways of helping its sufferers.


    'Self-pity and self-deception are the great enemies of Mankind' writes medical commentator Theodore Dalrymple in his recent book, An Intelligent Person's Guide to Medicine (14). Yet both are pervasive in modern society, and nowhere more than among patients with ME, above all in the ME organisations. To any observer who takes a historical or sociological perspective on the emergence of novel diseases such as CFS/ME, their origins in the existential distress of their sufferers is readily apparent - as indeed it usually is in the doctor's surgery.


    The tragedy of the sufferers is their lack of insight into this process, a deficit that is reinforced by the provision of a pseudo-medical disease label. Whereas according to the new policy of the Chief Medical Officer, doctors are now obliged to collude with the self-deception of ME sufferers, for Dalrymple, it is necessary to 'undeceive' to achieve change. From his humanistic perspective, it is the doctor's responsibility, acting with due circumspection, to 'undeceive the self-deceived'. While the official line ratifies confusion and promotes incapacity, this approach points the way towards enlightenment and recovery.



    .

    Spiked Magazine's GP Dr Michael Fitzpatrick:

    'ME: the making of a new disease'

    'Who benefits from the recognition of ME as a 'genuine illness'?' 2002.
    .


    .
    Grape Funk, Jarod and oceanblue like this.
  9. Wildcat

    Wildcat Senior Member

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    Is this REAL????? Or is it propaganda???

    Dr Michael Fitzpatrick in 'Spiked' Magazine:

    "Though there are always exceptions, such patients tend to be young, female and middle class, teachers, nurses, social workers. In more recent years, ME has made its appearance in the children of the above, and, unlike wealth, it has shown a tendency to trickle down into less affluent sections of society."

    How much more BS are we expected to believe from Dr Fitzpatrick and his friends at the Living Marxism/Science Media Centre???

    .
    Enid and Jarod like this.
  10. Sean

    Sean Senior Member

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    A failed Trotskyite hack remains an insatiable authoritarian, no matter how sweet their rhetorical finery.

    Their motto: Whatever it takes.
    Wildcat likes this.
  11. Sean

    Sean Senior Member

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    Science Media Centre: 'nothing more than public relations'
    Jarod likes this.
  12. Wildcat

    Wildcat Senior Member

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    Sean Said: "Science Media Centre: "nothing more than public relations"


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    The ScienceMedia Centre is Much Much more than Public Relations -

    .

    The Science Media Centre involves Manipulation of Public Opinion -
    .

    The Science Media Centre is not accountable to anyone!!!!


    Living Marxism (LM), Spiked, and the Science Media Centre's modus operandi has spread disinformation about ME for many years now - that is not neutral nor benign, nor ethical.

    .



    .
    Enid and Jarod like this.
  13. Wildcat

    Wildcat Senior Member

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    'Living Marxism''s stated objective of confident individualism without social constraint"...

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    ...... that translates as "survival of the fittest"


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    .... which explains George Monbiot's reference to the RCP/LM's ideology as a "Repugnant philosophy"

    .
  14. Snow Leopard

    Snow Leopard Senior Member

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    Apparently there is:
    http://www.lobbywatch.org/lm_watch.html
    Wildcat likes this.
  15. biophile

    biophile Places I'd rather be.

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    LOL Esther12 and Mark.

    That is a pretty good idea Alex. I would at least like to see a ME/CFS version, such as the ME Science Advisory Group, MESAG for short as in "message"?

    On a lighter note, in the battle of acronyms befitting the SMC, nothing beats the Wellcome Trust's "Science Policy in the News" (SPIN).
    Jarod likes this.
  16. Merry

    Merry Senior Member

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    Amazing document, Wildcat. Thanks. Michael Fitzpatrick -- the level of arrogance -- wow. Something definitely missing from his brain.
    Wildcat likes this.
  17. Merry

    Merry Senior Member

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    Oh, boy! I can't wait to dig into this. Thanks so much, Snow Leopard.

    I think someone above mentioned that the SMC website no longer lists its consultants (or are they called "experts"?). I had a quick look last evening and couldn't find that information which was there a few months ago. I can't remember exactly the last time I checked. Also it is now difficult to find out at the website who funds the SMC. I did find a list at the end of pdf, with a name something like "Annual Review." I wonder why this move to less transparency.

    When I first looked at the website (a year ago?) and saw that Monsanto helps fund the Centre, this was big warning sign to me about the agenda of the SMC.
  18. Esther12

    Esther12 Senior Member

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    I've got no idea if everything in this article on Lobbywatch is accurate, but parts of it sounded familiar.

    http://www.lobbywatch.org/archive2.asp?arcid=2785

    Really though, the same tactics are used to try to undermine just about every group pushing for social change. Passive and reasonable requests can be ignored, while any hint of militancy can be focused upon in order to undermine the movement, or paint them all as extremists. I've been getting more interested in the protest movements from the sixties in America, and and responses to them like COINTELPRO.

    The moral concerns about the way that CFS is treated are so much more complicated and ambiguous than the moral concerns about state sponsored racist abuse, that old tactics are likely to be much more effective now. I'm somewhat ambivalent about many environmental groups, and while I certainly recognise that the free market and the power of capital is likely to lead to far more environmental damage than would be optimal, I'm also often put off by what seem to be the unreasonable claims of some environmental groups. It would be easy for those in power and authority to increase my distaste for environmental groups by focusing public attention upon any instances where they do go too far, or get something wrong. I expect that many people feel some sympathy for patients diagnosed with CFS, but are also put off by what they see as extremism and militancy, and do not have the time and inclination to look at the problems which really concern us.

    I'm starting to ramble. Must get off-line and do real world things!
  19. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    And as I've said
    If these dangerous extremists are anti ME, then ME must be related/threatens big business (probably big tech business)

    ergo, they must know ME is caused or related to vaccines or some other major tech/business item
    ie it's "environmental", not normal transmissable disease, or random, natural health problem.

    They wouldn't be out to let us rot otherwise.
  20. Mark

    Mark Acting CEO

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    I was meaning to reiterate a similar point myself, though I would make it in a slightly more nuanced way. It certainly is weird and suspicious that the same extremists who are engaged in all this other denialism seem to have a special interest in ME. It's very hard to think of an explanation other than that there must be some industrial/scientific causal connection(s) involved in ME.

    My best guess on a way to explain this is a little more cautious: my guess is that they suspect, or fear, or perhaps even know, that some, or many, of the people diagnosed with "CFS", have illnesses caused by modern technology in one form or another. CFS has now been defined as such a convenient catch-all that it likely covers pretty much all new chronic illnesses that are not rapidly fatal, and they know that this will at least include any potential new illnesses caused by new technology. Since their agenda is a broad one, to deny and hide all harmful effects of new technology on humans and the environment, "CFS" is bound to be a particular special interest of theirs whether they know anything about what causes it covers or not. Any harmful effects, whether of vaccines, environmental pollution, or anything else, can be dumped into this bucket and systematically denied using the psychosomatisation 'theory'.

    So there is no particular reason, given that analysis, to assume that they know anything about what ME is caused by; they may just fear and suspect that, and it's sufficient that ME and CFS may be connected to one of their interests and that at least some subset of the CFS population are victims of something caused by their associated interests. And of course, that's without even bringing the interests of the insurance industry into the picture, and it has to be said that the money trail of the denialist ME/CFS researchers does quite clearly point the finger at that industry specifically.

    That said, I think when one looks at the history of classic outbreak ME in the UK, specifically, and especially at events in the mid-1950s (Royal Free 1955), with particular reference to the National Archives 'S Files' archive of classified scientific research, there are further good grounds for suspecting that the roots of the suppression of classic outbreak ME pre-dated the watershed developments in policy on managing ME/CFS that began in the late 80s following the Gulf War and the Lake Tahoe outbreak. In the events around the Royal Free outbreak and the Los Angeles outbreak we see lots of suspicious evidence pointing towards the novel polio vaccines that were being tested in those areas at those times. So my personal suspicion is that those specific incidents were suppressed at that time, in a relatively targeted way, and the change that took place in the late 80s was the move towards more systematically and generally denying anything on behalf of everyone with potential financial exposure.

    The National Archives S Files, which include the ME files and lots of fascinating material related to this discussion (look out for the mid-1950s reports on the 'polio vaccine crisis') are here:
    http://www.nationalarchives.gov.uk/catalogue/DisplayCatalogueDetails.asp?CATID=5955&CATLN=3&FullDetails=True
    and then follow the "Browse from Here" link and click to expand 'FD23' to start paging through the titles of the 'S Files' classified documents. You have to go through a few pages of fluff before it starts getting really interesting...and really the whole story of the long history of suppression of inconvenient scientific medical information is right there in the document titles, all the way from secret analysis of radiation testing following covered-up radiation leaks through to caution over revealing the harmful effects on women's health of high heels...

    If that link doesn't work for you, go to: http://www.nationalarchives.gov.uk/catalogue/ then 'Go to reference' FD23, and continue as above.
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