The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

Knight Science Journalism Tracker on contamination stories

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by urbantravels, Jan 7, 2011.

  1. urbantravels

    urbantravels disjecta membra

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  2. urbantravels

    urbantravels disjecta membra

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    PLEASE comment....
     
  3. urbantravels

    urbantravels disjecta membra

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    Please post knowledgeable and well-informed comments, because I need to count to ten a couple times before I weigh in. Maybe a couple dozen times.
     
  4. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    all is good now. Hillary Johnson wrote.

    And someone else wrote.
     
  5. Esther12

    Esther12 Senior Member

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    The logging in procedure put me off commenting. Thanks for linking to it to read though.
     
  6. urbantravels

    urbantravels disjecta membra

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    I have to say I'm really rather hurt to see the way my name was tossed around in this post - I acted in good faith sending in the tip, pointed to the Hue paper and the Wellcome press release, and said it seemed to me that the press release went way beyond what the actual paper said, and invited the writer to check this for himself and see what he thought.

    When he responded to me to ask whether I had any personal connection to the story, I said my only connection to the story was as an ME/CFS patient; a layperson with regard to the science, but that I follow it avidly and is deeply concerned about the science proceeding unhindered and being accurately and fairly portrayed by the media.

    I certainly wasn't expecting to have the mere fact that I told him I was a patient become, in the blog post, a discussion on whether I as a patient have any credibility at all - not just in sending in a tip, but on even whether I can be trusted to accurately report whether I'm sick! Apparently he is trying to carry on with some beef he had with commenters on another post in which (ironically enough) he had heavily criticized an article by Trine Tsouderos about the controversy over chronic Lyme. If I understand what he's trying to say in that second part, it's that it's really OK to quote patients (about what? their suffering and experience of being ill? or their own ideas about what causes their illness?) as long as you also include experts to explain why they are wrong. Not that he quoted me - all I bloody well did was send in a tip, and some follow-up emails with background (all of which I invited him to check up on his own and not take my word for it.) Looks like he didn't do much background work of any kind - "chronic fatigue disorder," indeed.

    I feel like I've been shoehorned into some other fight that I didn't start and didn't choose to be a part of, and I don't take it very kindly. A friend of mine emailed me: "What the hell does he mean, 'I take her at her word? Did he expect you to produce your medical records?"

    I've been waiting to post my own reaction, both as a necessary cooling-off period and because I was waiting for some other commenters to come in and help back me up. Some good comments have been made, and I was particularly honored to see Hillary Johnson weighing in. I really hope to see more good comments appear before I can trust myself to post a comment in the appropriate tone.
     
  7. Esther12

    Esther12 Senior Member

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    I understand you being a bit annoyed about that. The chronic lyme stuff does all seem rather superfluous. I don't think it's worth writing something agro though. It's his blog, and blogs can make people rather self-absorbed... there was no malice, just thoughtlessness. Hope it's not bothering you too much.
     
  8. urbantravels

    urbantravels disjecta membra

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    It's not a personal blog - it's a product of the MIT program on science journalism. It's a well-known and well-respected blog among the members of the science journalism community.
     
  9. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    It does seem like you've been put into the middle of a fight which has nothing to do with you. I'm sorry about that.

    I think, though, his point in saying, "I take her at her word," was directed at Trine, not at you. I think he was trying to make a point that you don't invalidate people's experiences (even when you don't believe in their disease). Which, again, has nothing to do with you but you've been dragged into it. :( :hug:

    He also ought not to have shared your name and disclosed your medical condition, without first checking with you. Only one or the other is ok without first asking permission to share. When you can do so calmly, I would suggest asking him to remove one or the other piece of information, if you don't want it shared like that.
     
  10. Esther12

    Esther12 Senior Member

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    I'd forgotten he used your name. I'd ask him to remove that. That is rude, and worse that I'd realised. What an arse.

    I'd send an e-mail rather than leave a comment though.
     
  11. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    yes, by email is what I meant to say as well
     
  12. rebecca1995

    rebecca1995 Apple, anyone?

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    This piece strikes me as a mixed bag. On the plus side, Raeburn points out that the claims of the Wellcome press release were not supported by the study it cited.

    And he rightly notes that Amy Dockser Marcus’s article was a “much more nuanced, and more accurate, interpretation of what the researchers found.”

    However, I believe he fails to pick up on the central problems of much of the XMRV “contamination” coverage. He seems to feel that quoting patients would have been enough to remedy the articles.

    Far more troubling than not quoting patients, journalists regurgitated the Wellcome release and wrote misleading headlines. And the stories’ worst problem was failing to interview experts, such as Drs. Mikovits and Alter, whose research has reached different conclusions from those of the “contamination” papers. Essentially, the claims of the press release and the studies went unchallenged in the media.

    Raeburn goes on to make disturbing statements of his own, such as “The evidence for XMRV seems to be weak, and weaker now with the publication of the four studies in December” and “If I were to report it, I’d want to talk to a variety of people who think it can’t be the cause, and to legitimate experts–if there are any–who think it can.” It’s biased to imply that experts who think XMRV might be the cause of CFS are not legitimate.

    I’m glad Knight Tracker showed an interest in XMRV coverage, but on the whole, I expected a stronger critique from Raeburn, whose analysis of the Lyme article co-authored by Trine Tsouderos was so incisive. (See
    http://ksjtracker.mit.edu/2010/12/16/chicago-tribune-off-balance-on-chronic-lyme-disease/).

    **

    ETA: urbantravels, it was unprofessional of Raeburn to disclose your name and diagnosis publicly; you have a right to be angry.
     
  13. Deatheye

    Deatheye Senior Member

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    I just can agree totaly to rebecca1995s comments. At first it didn't seem so bad. He doesn't totaly denie the possability that XMRV is the cause. But as rebecca sad I don't understand how he can interpret the contamination studies in that way.
    And I really don't get it how he got the Idea to release a patient name and diagnosis. Thats actually the part I personally think is the worst in the article.
     
  14. Angela Kennedy

    Angela Kennedy

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    FWIW, I've made the comment below in the comments section:

     
  15. alex3619

    alex3619 Senior Member

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    Hi Angela, or to put it in older historical terms (this is an ancient fallacy), truth can come from a peasant, lies from a king. I agree Angela. Appeal to authority is about trust though - you can trust an expert might know enough (but psychs talking about retrovirology!) but how do you assess a patients knowledge? When someone lacks time or resources or interest, they make a judgement and come to a snap decision. It can be very wrong, but its human nature. So its also understandable why journalists keep making this mistake. Bye, Alex
     
  16. *GG*

    *GG* Senior Member

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    By Derek Enlander:

    derek enlander MD Says:

    January 9th, 2011 at 6:18 am
    Hillary Johson as usual writes cogently about ME/CFS. THe excitement of the Oct 2009 Science paper has abated, but Judy Michovits achieved a result perhaps some what different from what she initially intended. She and XMRV became a cause celebre.

    Benefits and brickbats resulted. Journalist turned from their hippy ‘flu theory to write about a disease. Psychobabble notions were temporarily forgotten. The physical aspect of the disease was at last considered.

    Some journalists have questioned national ME/CFS research on both sided of the Atlantic, viz. CDC, NIH and MRC , this in itself is healthy.
    We now await a split sample, multi lab, double blind study to replicate or decimate the original work. No matter what, Mikovits has created new thinking for numerous journalists.
    Derek Enlander MD
    New York
     
  17. Angela Kennedy

    Angela Kennedy

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    Hi Alex
    It may be 'human nature' (whatever that is) , but it is nevertheless an irrational appeal to authority- so they need to be called on that. By not being called on it, they carry on working under fallacious reasoning, placing trust in a flawed social system (institutionalised claims to expertise) and then writing articles that tell us basically patient comments cannot be trusted, because they have no 'authority'!!! Remembering the 'beware the irrational appeal to authority' instruction would save them from that fallacy, and us from being adversely affected by bad reporting of bad science.

    This is a big issue, the problem of appeal to authority. One analogy I might use that might help us out of the belief some people should just be trusted because they claim to be experts. If you go to a plumber or a mechanic or tyrefitter, you do, to some degree, place some 'trust' in what they tell you needs to be done to your plumbing or your car. However, if the advice they gave you was problematic, or the work they did caused more physical problems or was not good enough, you would not think twice about demanding they rectify shoddy work, or give you money back, or questioning or challenging their assertions, even though you can accept they are likely to know more about certain aspects of their job than you (and they will have expertise in their occupation and may even have studied for it). Their appeal to authority will not save them from you demanding redress or questioning something they say when it really matters (ie. their work is impacting on your safety, well-being, integrity of home or car etc.)

    Yet people have a blind spot about doctors and scientists's appeals to authority, for various reasons.
     
  18. urbantravels

    urbantravels disjecta membra

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    At my request, the author of this blog post has removed my name.

    I've never been terribly concerned about protecting my identity around here or elsewhere on the Web when I talk about ME/CFS; I'm not ashamed of who I am or of my illness, but I really have to insist on being able to control when and where that information is revealed. And I so completely did not appreciate having my name and diagnosis tossed around as if my illness were my "opinion."

    BTW if anyone is concerned about the registration process for commenting, don't be, they really don't hold you to that "you must be a journalist or student etc." thingie. But I won't be commenting on this one myself; I'm burnt out on it for now.
     

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