Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
Discuss the article on the Forums.

Wall Street Journal article on PACE Trial and data-sharing

Discussion in 'General ME/CFS News' started by Tom Kindlon, Mar 7, 2016.

  1. Tom Kindlon

    Tom Kindlon Senior Member

    Messages:
    1,387
    Likes:
    8,271
    Wall Street Journal article. Includes comments from Anna Wood, David Tuller, James Coyne, me and others.

    Could have been better and could have been worse.

    I said a lot more than what is covered e.g. 30-minute Skype call, 700-word reply to follow-up questions. So I'm disappointed more of what I said wasn't included but I suppose with the big media outlets, often they only quote a little of what you said.

    http://www.wsj.com/articles/patients-scientists-fight-over-research-data-access-1457394712

    People can comment underneath.

    Amy told me it will be in the print edition.
     
    moosie, Jennifer J, L'engle and 38 others like this.
  2. meadowlark

    meadowlark Senior Member

    Messages:
    240
    Likes:
    417
    Toronto, Canada
    Frustratingly, I can't read it. WSJ asks me to subscribe first. I read a few cultural pieces there in the last while and maybe I've reached my limit.
     
    Esther12 likes this.
  3. Sean

    Sean Senior Member

    Messages:
    3,257
    Likes:
    17,985
    Disappointed they didn't mention the null result in 2.5 year follow-up paper from the PACE team. That is the 800 lb gorilla in the room, IMHO, because it negates previous claims by PACE of any benefit from CBT or GET.

    But otherwise, an okay article.

    meadowlark
    Clear the cookies and cache in your browser, then try again.
     
    L'engle, lycaena, GalaxiiGrl and 14 others like this.
  4. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    I think that it's unlikely the details are ever going to get covered in the print edition on the WSJ. The trouble is that without the details it turns into a 'he said, she said'. Not sure why Lewandsky was included when he's said that he's not familiar with the details either: maybe PACE/QMUL refused to discuss any of the specifics? Given how weak their position is, that's probably the best thing for them to do.
     
  5. akrasia

    akrasia Senior Member

    Messages:
    213
    Likes:
    464
    Tom, although it must be disappointing that most of the major PACE arguments are missing from the article, I think the fact that the controversy, using the pretext of the issue of open data, has broken the waves of the mass media is very important. She actually stacks the deck for us by noting that the NIH has a policy of open data and following it with statements by Tuller, Coyne, Anna Wood, and finally yourself, which are all arguing for release. She lets Stephan Lewandowsky have the last word but, at least to my admittedly biased ears, his argument sounds a bit recessed, offered in the interests of balance rather than cogency.

    Thanks.
     
  6. Esther12

    Esther12 Senior Member

    Messages:
    8,449
    Likes:
    28,523
    I think that 'simply' is a bit misleading... needs some provisos in there imo. So hard to summarise their approaches accurately though. We need longer articles!!
     
  7. Liz_999

    Liz_999

    Messages:
    24
    Likes:
    94
    Try deleting the cookies in your browser. That's usually how websites track the number of times you have visited.
     
    meadowlark likes this.
  8. Comet

    Comet I'm Not Imaginary

    Messages:
    676
    Likes:
    3,625
    Although this may not have been what you envisioned, @Tom Kindlon, it seems like a win for us. It's another article getting the message out that this disease isn't all in our heads. That's a good thing!

    Thank you for your hard work and advocacy.
     
    L'engle, Mel9, Keela Too and 14 others like this.
  9. adreno

    adreno PR activist

    Messages:
    4,843
    Likes:
    11,028
    They're discussing the issue of data sharing in the context of the PACE trial, and relaying the arguments of proponents of both sides. I think it was a very good article, objective and clear.
     
    Mel9, Comet, helen1 and 9 others like this.
  10. Sidereal

    Sidereal Senior Member

    Messages:
    3,097
    Likes:
    17,178
    Decent article.
     
  11. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    I can't comment either - when I sign in, the other comments disappear and there's no comment box.

    Has anyone figured out how to comment?
     
    Sean likes this.
  12. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    A bit too "balanced" for my liking, but then that's probably because I'm a crazy ME patient (in fact I'm not, I'm an ME sufferer, I wish they'd stop calling us patients, it implies we have access to medical treatment and doctors who respect us) incapable of being objective about this.

    Agree it's good to be in the main-stream media. Also wish they wouldn't refer the PACE investigators as "scientists".

    I also found a large heap of irony in the following:

    Presumably "their personal stake in the matter" refers to the "patients" (did I mention I hate the way they call us patients as if we're all tucked up in a hospital bed with clean white sheets being cared for by concerned professionals?) and not the "scientists" (did I mention I don't like the PACE investigators being referred to as "scientists"?).

    I suppose a good enough article, they have to try to be balanced until they learn what they're talking about.
     
    Mel9, Keela Too, Comet and 11 others like this.
  13. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,677
    Likes:
    21,540
    Germany
    Unfortunately the first offensive troll of the day has.

    Time to drown him out with lots of well-reasoned, calmly expressed civilized debate. Thanks for that :)
     
    Mel9, Comet, leela and 7 others like this.
  14. Stewart

    Stewart Senior Member

    Messages:
    291
    Likes:
    3,432
    As far as possible we should try and drown him out with reference to the data sharing issues (which was the focus of the article) rather than our many concerns about PACE.

    If we go on and on about how the bad the science is we risk reinforcing his narrative that we're 'bizarrely aggressive'. But we should point out that if 'science is science' as he claims, there shouldn't be an issue with making the data available to be independently verified.
     
    Mel9, Esther12, Bob and 4 others like this.
  15. Sasha

    Sasha Fine, thank you

    Messages:
    12,789
    Likes:
    34,217
    UK
    Best to just talk past the troll, rather than engage....

    But yes, how did he/she manage to post when we can't?
     
    Mel9, leela, Esther12 and 1 other person like this.
  16. AndyPR

    AndyPR Senior Member

  17. Anna Wood

    Anna Wood wood/sheridan

    Messages:
    23
    Likes:
    1,148
    I'm a bit frustrated too - having spent 30min talking on skype, explaining the issues - which she really seemed to get, there's a lot more that could have been said without going into details of PACE. In the end of the two bits assigned to me, one I didn't really say and the other was from an e-mail of follow-up questions.

    Still, glad people think it was worth it, and gets the debate some mainstream airing!
     
    JayS, L'engle, Mel9 and 23 others like this.
  18. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,615
    Likes:
    12,452
    South Australia
    Please don't "drown" anyone out. One very good reply is all that is needed. Too many replies make us look bad too...

    Also, "literally" :rofl:

    [​IMG]
     
    Last edited: Mar 8, 2016
  19. Stewart

    Stewart Senior Member

    Messages:
    291
    Likes:
    3,432
    Wait - are you trying to tell us you *don't* have a bound copy of The Lancet Volume 377 that you punch, pummel and throw around the room whenever you're having a bad day? I thought that was a condition of membership of the PR forums.... :)
     
  20. Roy S

    Roy S former DC ME/CFS lobbyist

    Messages:
    669
    Likes:
    1,405
    Illinois, USA

See more popular forum discussions.

Share This Page