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Buzzfeed News - A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Nicolas the french guy, Dec 30, 2017.

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  1. Allele

    Allele Senior Member (Voting Rights)

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    OMG when I saw the title of this thread I was prepared to see another total shitfest of SMC propaganda.
    Between this article, Tuller's dogged persistence, and Jen's epic tweeting, I dunno how much shit EC's spade
    will be able to throw any more. Bravo everyone, BRAVO!
     
    Last edited: Dec 31, 2017
    Allele, Dec 31, 2017
    #41
    TigerLilea, Dolphin, Valentijn and 17 others like this.
  2. Luther Blissett

    Luther Blissett Senior Member (Voting Rights)

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    1,678
    No, I would prefer someone else to create one if possible.

    Too many likes for doing nothing is not good for me.
     
    Luther Blissett, Dec 31, 2017
    #42
    Valentijn, Nellie, ladycatlover and 11 others like this.
  3. Sean

    Sean Moderator Staff Member

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    Australia
    :D

    This, to the power of a gazillion. One of the most important responsibilities and obligations of all those with professional expertise of any kind (from tradespeople to senior professors) is to make sure their fellow professionals don't stray from the path, and call them out when they do.

    Seconded. Might just be the author's style, or the magazine's editorial style, but it made it easy to read. Frequent, well placed paragraph breaks are an essential part of the journalist's art.
     
    Sean, Dec 31, 2017
    #43
    Valentijn, Peter Trewhitt, Skycloud and 12 others like this.
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    4,393
    I only read the article after seeing all the praise here, so I was a bit disappointed by it. It was still good, and another step in the right direction, but I found it annoying that the 'harassment' stuff didn't include reference to the PACE tribunal ruling, or any of the other things that, at least partially, undermine that harassment narrative that some people are pushing.

    Given the context, I'm not sure what I thought of this quote from Reingold: “Both UC Berkeley and the University of Bristol believe strongly in the principles of academic freedom and the ability to engage in robust scientific debate. The two universities are also interested in seeing that such debates occur in a civil manner so that the genuine issues of scientific discovery and research methods are not lost in arguments of a personal nature.” Bristol don't seem to believe that strongly in the importance robust scientific debate.

    By far the best parts of the article came from Parker, Crawley and Bishop. Chiver had a big advantage over Tuller with being able to get these people to speak to him, and they all make SMILE sound worse than any critic can!​

    All the bits from Edwards were great, as is to be expected. I can be surprised how little detail articles like this go into, so having an 'authority figure' able to make some very simple points like that is really useful and important.

    I'm not really sure how other will judge this article. Compared to the BBC's coverage of SMILE, it was amazing, but was short of a vindication for the patients who'd been raising concerns about SMILE years ago, and had been accused of running a campaign of anti-science because of that.
     
    Esther12, Dec 31, 2017
    #44
    TigerLilea, Dolphin, Lidia and 14 others like this.
  5. Dial It In

    Dial It In Established Member (Voting Rights)

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    Have to disagree.
    Crawley should be called out
     
    Dial It In, Dec 31, 2017
    #45
  6. Sean

    Sean Moderator Staff Member

    Messages:
    7,198
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    Australia
    Yeah, that was a glaring absence of the most important part of the harassment/threats story.

    Its value is in the relative advance. This kind of media story would have been almost unthinkable a couple of years ago (with honourable exceptions).

    But agree that there is still a long way to go. Hopefully Chivers will continue to follow it and fill out the details and arguments, and/or inspire others to do so.

    I do think that reading between the lines suggests that Chivers is not impressed by the Parker/Crawley act, and was mostly giving them enough rope to hang themselves.
     
    Sean, Dec 31, 2017
    #46
    Valentijn, EzzieD, Invisible Woman and 10 others like this.
  7. Allele

    Allele Senior Member (Voting Rights)

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    You need to read all the tweets (there are a lot!) as she fully calls her out, repeatedly.
     
    Allele, Dec 31, 2017
    #47
    TigerLilea, Valentijn, Skycloud and 11 others like this.
  8. Alvin

    Alvin Senior Member (Voting Rights)

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    3,309
    Very well done :)
    That is a great idea though, Make Ester more famous so her house of cards receives more scrutiny and more weight pushing down on her lies.
    It seems more publicity is really the answer for ME/CFS research, Jen is awesome!
     
    Last edited: Dec 31, 2017
    Alvin, Dec 31, 2017
    #48
    TigerLilea, Valentijn, Skycloud and 9 others like this.
  9. Sean

    Sean Moderator Staff Member

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    7,198
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    Australia
    Yep. The bright disinfecting sunlight of direct attention.
     
    Sean, Dec 31, 2017
    #49
    TigerLilea, Keela Too, Valentijn and 8 others like this.
  10. Alvin

    Alvin Senior Member (Voting Rights)

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    3,309
    Indeed, and perhaps we can add a magnifying glass to the equation :woot:
     
    Alvin, Dec 31, 2017
    #50
    Allele, ladycatlover, Barry and 1 other person like this.
  11. Sean

    Sean Moderator Staff Member

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    Fame/infamy. It's a fine line.

    Be careful what you wish for.
     
    Sean, Dec 31, 2017
    #51
    Valentijn, Allele, Invisible Woman and 1 other person like this.
  12. Alvin

    Alvin Senior Member (Voting Rights)

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    3,309
    I didn't say i want to be famous but people seeing what life with ME/CFS is like seems to be more effective then medical advocacy
     
    Alvin, Dec 31, 2017
    #52
    ladycatlover and Barry like this.
  13. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Last edited: Dec 31, 2017
    Kalliope, Dec 31, 2017
    #53
    TigerLilea, Keela Too, inox and 18 others like this.
  14. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Agree. But it is debated on twitter with the journalist. Hope he digs further.
    https://twitter.com/user/status/947152802178093056


    https://twitter.com/user/status/947187630587957248
     
    Kalliope, Dec 31, 2017
    #54
    Skycloud, Allele, Invisible Woman and 6 others like this.
  15. Sbag

    Sbag Senior Member (Voting Rights)

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    420
    Interesting comment from EC "She added that self-reported school attendance lined up very well with the schools’ records of attendance".

    This means that she had the school records, if so why not use them rather than the self reporting?!
     
    Sbag, Dec 31, 2017
    #55
    Dolphin, Valentijn, Peter Trewhitt and 21 others like this.
  16. guest001

    guest001 Guest

    We don't. Imo this latest salvo is hem chasing. The real work has already been done by a US/ UK collaboration. And very effectively. And continues to be done using point by point dissection of what Crawley has actually published. Hyperbole and dogged interrogation of her work are not the same (edit: as each other).
     
    Last edited by a moderator: Dec 31, 2017
    guest001, Dec 31, 2017
    #56
    Solstice, Allele, EzzieD and 7 others like this.
  17. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    13,505
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    Er, there is this chap called John Edwards quoted in the Buzzfeed piece a bit. I didn't see any US researchers mentioned.
     
    Jonathan Edwards, Dec 31, 2017
    #57
    TigerLilea, Solstice, Valentijn and 20 others like this.
  18. Trish

    Trish Moderator Staff Member

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    Thank you @Jonathan Edwards for your very useful input to the Buzzfeed article. It's great to see Tom Chivers consulting you and representing your points clearly. Your contribution makes an enormous difference.
     
    Trish, Dec 31, 2017
    #58
    TigerLilea, ahimsa, Dolphin and 19 others like this.
  19. Barry

    Barry Senior Member (Voting Rights)

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    (You have to read all her tweets)
     
    Barry, Dec 31, 2017
    #59
    TigerLilea, NelliePledge, Skycloud and 4 others like this.
  20. Barry

    Barry Senior Member (Voting Rights)

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    Quite so.
     
    Barry, Dec 31, 2017
    #60
    Solstice, Allele, ladycatlover and 1 other person like this.
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