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UK Science Media Centre, RCP, and press silence on XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Dx Revision Watch, Sep 4, 2010.

  1. bullybeef

    bullybeef Senior Member

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    Think based upon the SMC response to the Alter/Lo paper, and the fact that they are directed be a former RCP member, it gives us a reasonable reason to be suspicious of their activities. With Wessely also representing their 'panel of experts' too, it is harder to find distance between him, their main players, and their agenda. Whether Wessely is an ex-member or not, he is definitely in league with them.

    And I suppose you don't have to be an ex-member to be in the club.

    Just have a look at their board members (apologies if already posted)

    See: http://www.sciencemediacentre.org/pages/about/smc_board.htm

    So there's no point contacting the Times, or BBC then?
  2. Mark

    Mark Acting CEO

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    Nobody's Perfect...

    Mmmm indeed...

    In post #49 Suzy said (my emphasis, throughout the following quotes):

    What seems quite extraordinary to me here, Suzy, is that you make this post although in fact (yes very definitely in fact!), I never did state that! :eek:

    So while I'm often forgetful about the detail of precisely what I may, or may not, have said in the past, on this occasion I felt quite sure I had never gone so far as that, and so I have gone back and reviewed the thread to check thoroughly. Here are the relevant extracts...

    Bullybeef, #3:
    A startling post by Bullybeef, drawing all our attention to a remarkable piece of information about the SMC which, though seemingly a wild accusation at first, turns out to be true, and this fascinating and highly relevant line of inquiry has sparked this whole thread. Unfortunately, bullybeef made a mistake in the bolded comment, for which he has apologised, and we've all established that we seem to have been misled by a rumour and there is no source for this claim, which we seem to have picked up from an assertion on Digitalspy some months ago, or elsewhere.
    Having seen this rumour repeated by Bullybeef, I responded...

    Mark, #17:
    I have since edited that post to insert the word "alleged" between "as" and "former(?)", but the quote above is the firmest claim I have made on this subject on this thread. The allegation was made by a poster on digitalspy, as we've established, and perhaps by others, since bullybeef and I recollect seeing it before, and might perhaps be better described as "rumoured" but editing it again would seem over-complicating so I'll leave it there for now.

    Suzy then queried the source for the claim. I responded:

    Mark, #20:
    Not afraid to admit where I have been wrong, and genuinely grateful to Suzy for alerting us all to the importance of rigour in such matters. And so I edited my post to add the word "alleged", which seemed appropriate:

    Mark, #21:
    Imagine my surprise when I read:

    Suzy, #49:

    It seems quite extraordinary Suzy, in this context, for you to make an unreferenced and false allegation about me!
    As the record above, and the thread itself shows, Bullybeef did so, but I did not and what you seem to have done is attributed the comment on Digitalspy to me!

    You might have at least checked the quote you attributed to me before laying in to me! And I was most surprised to read your continued complaint after Bullybeef and I had already apologised for our amateurism and I'd thanked you for scrutinising us.

    "The difference between bullybeef and me and between you and me is that my posts and articles are published under my own name", you say.

    Well that's one difference between us Suzy. Another difference between us is that I am chronically sick for 15 years, and you are a campaigner on behalf of the chronically sick. And another difference is that you have been at this for many years whereas I am very much new to the scene. I am very new to ME/CFS politics, having never felt I had the energy to get embroiled in it, and I've also never posted online until less than a year ago when the XMRV news led me to feel I simply had to make a stand and speak out. So there seem to be a few differences.

    Yes, I am anonymous here. I was in fact very afraid of the potential consequences of logging on here and writing about my personal experiences with my illness - concerned about the potential for friends, family, acquaintances to pick up on embarrassing details, concerned about the risk that some random nutter might spot me and pursue me to my home address (it happened just down the road a couple of years ago, somebody got killed, so excuse me for a little paranoia), and above all those - because I had decided to finally take a stand and to hell with the consequences - concerned about the potential implications for my family. But after everything, I felt I simply had to take a stand. And so here I am, anonymous still, for now at least.

    I will continue to defend the right of posters to post here anonymously. I have not yet posted my details, which would perhaps be desirable in the interests of the transparency of Phoenix Rising as an organisation, but part of the reason I have not revealed more about myself is because I believe that the principle of the legitimacy of anonymity is something I should defend on behalf of other members who may feel the same fears as I do, but wish to have a voice. I make no further apologies than I have above for my anonymity. There seems to me to be valid reason to be cautious.

    This is a patient's forum. It was set up by a sufferer of ME/CFS, it is run and managed by sufferers, and it's an incredible achievement that we have done all that together despite the challenges we face. Doubtless there are people who mock all that, and doubtless there are those who will say "look at these weirdos, they can't even get their facts straight, what a bunch of rabid nutters". But we are simply ordinary people, from all walks of life, and from all around the world, who have been sick for a long time, sharing our experience. We don't have to have university backgrounds to post here, we don't have to verify each other's disabilities or identitites in order to post, and we don't have to apologise for not all being intellectuals. I will defend the right of ordinary people who are sick and kept in the shadows to try to have a voice and to become involved and engaged with the science or the politics of ME/CFS and to stumble and fail together as we bravely share our experiences together publicly. Maybe we do risk being misrepresented and mocked, and maybe that will undermine credibility in the eyes of some. I would hope that the general readers might be forgiving and recognise flawed and frail humanity for what it is, and perhaps feel a degree of sympathy rather than look down on us with smug academic disapproval.

    I do hope so, and I hope that enough people are able to recognise that we are human, here, and that humans are not perfect, none of us, and we do make mistakes. Even you, Suzy, as we've just seen. When I make a mistake, I am not afraid or ashamed to admit it, and to apologise, and to try to do better in future. I think it's fair to now ask you to do the same.

    Suzy, I PM'd you the other day, before this all blew up, to express my gratitude and appreciation for the fantastic job you do. I explained that I think your site is as good and accurate a UK site as I have seen, and I massively appreciate the perspective you bring. There are far, far too few people who do not have ME/CFS and yet stand up as advocates for us. You are one, and as such your presence amongst us is greatly appreciated: I am always pleased to see you post here. Thank you again. I know it must be frustrating when others - patients and professionals alike - fail to follow the standards of rigour you have set. But please, forgive us. We are only human, we are flawed, and we do make mistakes. What's more important in my opinion is how we respond and behave when we do so, because in the end, we are all here to learn, together.

    Mark
  3. bullybeef

    bullybeef Senior Member

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    I appreciate your defence, Mark.

    One thing we have in common is we are both novices, I was only diagnosed in 2008, and I only registered on any ME forum a year ago. I am sure Suzy understands that we are novices, and that wild speculation is part of the norm on many forums. She seems to have accepted our apologies, and I am sure she will take things we say in future with a decent pinch of salt.

    BB
  4. Mark

    Mark Acting CEO

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    The Heart of the Matter?

    Quite so. They may not be a conspiracy, but I dare say some of them may have been known to have a quiet drink with each other down in London from time to time. That's the thing about conspiracy theory - everything always looks much more like a conspiracy from the outside than it does from the inside. But "conspiracy" is just a word, really. Different people have different understandings of what it means.

    I found the history of former MP Ian Gibson fascinating, thanks for that Suzy. It seems that both he and David King (Chief Scientific Advisor to Blair and Brown) are also both former trade union activists who were scientists at university together, working together for a time and then diverging over detail in some way I don't understand (not being an expert in doctrinal differences of the left). Gibson was SWP, which I recollect as being a larger movement than the RCP, although perhaps just more visible and vocal - I remember they used to annoy the bulk of protesters at pretty much every demo I ever went on. Gibson's books sound interesting - especially, to those with MCS, "Within Reach the EUs New Chemical Strategy" - but without exploring further I wouldn't know what principles guide him in his work. Unfortunately Gibson had to resign for sticking his daughter's nose in the trough by selling her a half-price home - but he and King do seem to have some genuine scientific credentials, at least, which may be a good thing.

    So anyway, there's clearly a broader pattern emerging here. I suppose it really shouldn't be surprising that the people in senior positions under a left wing administration are former left-wing activists with university connections. Who else would get deeply involved in the politics of science, after all? Not those scientists who prefer to just keep their heads down and just get on with the science, I suppose - although those people are precisely the ones with the neutrality and balance one would prefer to see in one's policy-setters, so it's a shame it works out that way. I think we can tentatively conclude that what we're looking at here is a pattern of power structures that probably repeats itself right across the world, maybe not explicitly conspiratorially, but with international networks of like interests forming and evolving all the time. The people who get deeply involved in all this stuff, from both left and from right, are probably all extremists, one way or another, from the perspective of the disinterested "common man".

    So it may not be at all productive to start delving away at the networks and looking for some kind of final answer to the conspiracy question - especially since in the UK one might expect now that the right wing networks are going to be more important for the next few years at least. But I do think it is good in the interests of democracy that we all look back at them and try to understand who and what our leaders are, and what their motivations and beliefs are. Ordinary people don't really want to know about all the tedious detail of these sort of concerns, but it's probably important that they have a realistic understanding of what the key debates are really all about.

    So the thing that has emerged, for me, from this exploration, is the philosophy espoused in my post #40 above, because that seems to get to the heart of what the important debate is really all about. The issue to me seems to be this:

    Is it OK to secretly sacrifice a few humans in the interests of overall scientific advancement, for the greater good of humanity as a whole?

    The philosophy espoused by Living Marxism/LM/IoI, as described by LobbyWatch, says that it is. It says that the green movement is wrong, and a brake on progress, and that it's wrong to dictate policy based on the harm caused to people like Bhopal victims - publicising such unfortunate accidents will only lead to a public panic and cause a slowing down of scientific progress, and so, it's better to keep such things quiet and let the scientists get on with it.

    And that is the philosophy behind the foundation and leadership of the Science Media Centre - a philosophy supported by elements of both the extreme left and the extreme right!

    Well. And there I was wondering about the ethics and morality of experimentation on animals! There I was feeling sorry for the poor monkeys when posters enthusiastically suggested injecting them with viruses, putting them under conditions of extreme stress, and seeing what happens! There I was thinking that ethically, and logically, if we do that sort of thing to 'lower' forms of life like monkeys than we can have no excuse for complaining if some 'higher' form of life - like an alien civilisation or a bunch of super-brained intellectuals - does exactly that same thing to us.

    It seems like we have moved on past the anti-vivisection argument then. The question we now need to ask ourselves is: What level of secret experimentation on human beings is acceptable? And what should be our society's guiding philosophy in this matter? What principles should guide our leaders and our scientists when they design their experiments? What foundation would we the people like to see enshrined as a basis for the ethics of science?

    By the sounds of it, the principle that holds great power at the moment is some kind of extended utilitarianism that says that the suffering of the few is justified by the greater good - extended, I say, because it seems to abandon hope of the impossible calculation of the future good vs the present harm, and instead argues that all experimentation is justified and that no brakes on scientific progress should be allowed - it seems to be an article of faith that all science delivers progress, which is all good, in the long run, and we should all be prepared to sacrifice ourselves towards this noble end, which justifies any means necessary (or, indeed, unnecessary, as it may turn out).

    I think I see the argument, which is no doubt worked out in much more nuanced detail than I have guessed at here, and by much cleverer chaps than me, but I would like to propose an alternative article of faith: Respect For Human Life. I'd quite like to propose the broader principle of Respect For Life, actually, but that one may be a little too extremist for most, so let's start with humans for now, at least, OK? Maybe if we can all learn to respect ourselves we will start to respect all life, in time...
  5. natasa778

    natasa778 Senior Member

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    Mike Fitzgerald, a GP who has written extensively on the 'delusion' of autism parents etc (regularly comes to biomed conferences in UK to hackle parents and speakers), has a severely autistic son 'tucked' away in residential home... had this to say on ME

    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

    (severe warning though, not for easily-angered or those in danger of a relapse), the gist of it being: "...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 ... 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..."
  6. Mark

    Mark Acting CEO

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    Spiked Online being an online mouthpiece of this group.

    Wikipedia:

    Well at least they are consistent in their philosophy. They seem prepared to sacrifice their own children to "make history". :eek:

    Is that us, then, in the eyes of these people? "Spiked"? :eek:
  7. natasa778

    natasa778 Senior Member

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    journalist Martin Walker has written extensively on SMC, goldacre and the merry company he kept/keeps at IoP

    "....For some time now, King’s College has been deeply involved in the
    programme of spin designed by industry and the New Labour government.
    However, as is evident from the involvement of Goldacre
    there, the relationship between The Lobby, the University and the hospital,
    is not simple. As well as Wessely’s role, ex-Revolutionary
    Communist Party members have also played a part in bringing vested
    interests to the college. Together with pseudo-scientific research into
    mental illness and environmentally caused illness, King’s is deeply
    involved in risk analysis for various controvertial environmental factors.
    36

    Regester Larkin is a PR company, co-founded by Mike Regester
    and Judy Larkin, both of whom have appeared at events organised by
    the Institute of Ideas (IoI), the ex-RCPers (referred to here also as the
    Living Marxism Network [LM]) front organisation funded by Pfizer.37
    The company specialises in ‘risk management’, quickly stepping in to
    manage media around a crisis, and hopefully salvaging the reputation
    of the company or industry.

    It was from research jobs at Regester Larkin that Tracey Brown
    and Ellen Raphael, both former graduate students in Frank Furedi’s
    department at the University of Kent38 and ex-RCPers, moved on from
    their jobs to administer the newly set-up Sense About Science.

    Judy Larkin is on the advisory board for King’s College’s Centre
    for Risk Management, where she advises on risk communication.The
    Centre opened in January 2002. It currently has nine academic and
    research staff, and eleven research students. Why does a University
    Hospital research department need one of the top Anglo-American
    public relations figures on its advisory board? The answer is simple,
    the Centre is in the business of playing down risk, not researching it
    scientifically, and their most noted player is therefore a PR, crisis
    management guru.

    Clearly what industry wants is not objective scientific research,
    but a constant stream of disclaiming information that can be channeled
    out of King’s through the Science Media Centre to science journalists
    and politicians."

    and much more on http://quackbengoldacre.wordpress.com/the_placement/
  8. Esther12

    Esther12 Senior Member

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    While Fitzgerald insisted that recognising ME is a terrible way of medicalising normal human behaviour, he also seems concerned that looser definitions of autism will distract from the real hardship faced by those like his son.

    It seems that he wants to maintain a clear barrier between the deserving sick like his son, and the whinging sick like middle-class female ME patients.

    http://www.timesonline.co.uk/tol/comment/columnists/guest_contributors/article6870232.ece

    "The concept of the autistic spectrum, including people with Aspergers syndrome and high-functioning autism as well as those with classic autism, who usually have severe learning difficulties and more profound social and behavioural problems, has helped to reduce the marginalisation of people with autism. But the tendency to label as autistic every computer geek and eccentric scientist, and every obsessive train-spotter and stamp-collector (compounded by the vogue for identifying historical figures and even contemporary celebrities as autistic) carries the danger that the spectrum becomes stretched so wide that autism loses its distinctiveness.

    Normalising autism may reduce stigma, but at the risk of trivialising the problems of those with more severe learning difficulties and also of underestimating the extreme aloneness that results from the social impairment of autism, even in higher-functioning individuals."

    It's funny that what he says mirrors so well with what many CFS patients have been saying about the ever looser definition of CFS.
  9. Mark

    Mark Acting CEO

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    That's an amazing insight Esther12! It really does sound like exactly the same argument that the most severe ME patients express. I often get the feeling that when we see the face of our "enemy" it's like looking in a mirror, but never more so than in this case! No wonder it's all so confusing and so intense. Let's just hope that this implies that a thesis/antithesis is soon going to lead us all to some kind of positive synthesis that resolves everyone's problems. We have to hope for that, I think, the alternative is too horrific to contemplate - there's no way out of the maze that way...
  10. bullybeef

    bullybeef Senior Member

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  11. Mark

    Mark Acting CEO

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    ?

    Still shows up for me, the first line is

    "Fiona Fox (born 1964) is the director of the Science Media Centre and a former leading member of the Revolutionary Communist Party."

    It does look maybe a little different though, compared to my recollection...Suzy detailed how you can see the edit history process etc earlier.

    If we are making waves, then good. The agenda described for the LM/IoI movement needs to be taken on and exposed. Ordinary people would never sign up for that.
  12. Mark

    Mark Acting CEO

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    The page I see on that link says at the footer:

    "This page was last modified on 8 July 2010 at 21:37"

    and mentions the RCP although not LM.

    What goes on BB?
  13. dipic

    dipic Senior Member

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    Eh? There were never any citations before this thread was even created as far as I can tell. You can view the article's full revision history here:

    http://en.wikipedia.org/w/index.php?title=Fiona_Fox_(UK_press_officer)&action=history

    Also, as this shows, the page has stayed the same, aside from a couple slight revisions recently - in other words, I don't see where you might have gotten the idea that her wiki was removed and completely rewritten from scratch... unless I am misunderstanding you?

    Oh and your link is broken (a parenthesis was left out of the hyperlink.) I amended it within my post of your quote. Perhaps that's the cause of confusion? :confused:
  14. Mark

    Mark Acting CEO

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    That's what I'm seeing too dipic - although the discussion does seem to show several attempts to write out bits of her history with Living Marxism, including by a member of her staff at the SMC, and it seems that references to her involvement with Living Marxism were successfully removed since I don't see them there now, nor the reference to an infamous Living Marxism article on Rwanda, which her staff member Simon Levey argued was "as relevant as whether she was a teen Rod Stewart fan or not", and which seems to be no longer accessible via the wayback machine link in the discussion section.

    There was also a proposal to delete the whole article on July 2 2010.

    Busily rewriting history, it seems...
  15. hvs

    hvs Senior Member

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  16. Mark

    Mark Acting CEO

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    Was waved through, more like...it is British Science after all, and there's probably a degree of urgency now to establishing that oh yes of course we're on top of this whole virus business thanks...
  17. Esther12

    Esther12 Senior Member

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    In the discussion section it mentioned being up for deletion. Maybe bullybeef just checked it at the moment it was down.
  18. biophile

    biophile Places I'd rather be.

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    Countries tend to respect their own researchers more. The UK's approach to ME/CFS is particularly dominated by biopsychosocialists who believe XMRV isn't relevant according to their own research (nor important even if it is found by other researchers and would only encourage abnormal illness beliefs such as "viral attribution"), and the media coverage was suspiciously quiet, with the SMC downplaying the MLV/CFS study in their "press release". But as far as I know no country other than the USA had anything more than a very small handful of news articles on the Lo et al paper. Also, isn't New Scientist primarily based in the UK?
  19. Mark

    Mark Acting CEO

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    That was a few months ago, from what I saw (noted above).

    But yes that was my guess too, perhaps this was just an abortive attempt and it was restored within the hour.
  20. Mark

    Mark Acting CEO

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    Fair points biophile, but only up to a point. Yes they respect their own researchers more. But in this case, it was on Dutch TV with the head psych starting to back down, it was at least printed in Malta, Venezuela, Iran...and if not a massive splash round the world, it at least made it into print everywhere else. I checked out New Scientist. It wasn't in the print edition as far as I could see.

    And countries that tend to respect their own researchers...well that doesn't hold for everyone and very much less so after all this as far as I'm concerned. I do feel a bit sorry for all the good scientists and doctors in my country, because a lot of people are going to be getting tarred with the same brush here. But still, they never stood up and exposed the psychobabble, and it's not like nobody asked them to.

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