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 ...
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Navigating Privacy and Presentation of Self on Health Discussion Boards Among Individuals with LTCs

Discussion in 'Latest ME/CFS Research' started by Dolphin, Feb 15, 2017.

  1. Dolphin

    Dolphin Senior Member

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    I read this.
    I don't recall anything particularly useful/that I might quote again so not a paper I would particularly recommend reading. However I don't recall any problematic attitudes regarding ME/CFS.

    Free full text: http://www.jmir.org/2016/10/e274/

     
    Valentijn, mango and Esther12 like this.
  2. ash0787

    ash0787 Senior Member

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    As they sort of suggest, its easy to confuse privacy with civility, or rather peoples interests are not necessarily relevant to the topic of CFS/ME, for example I am trying to get Hillary Clinton executed for child abuse, I don't mind saying because I think everyone should know about it, but it doesn't really help us to sort out our disease.

    Also as a general rule its fair to 'research' people online, trace their accounts etc, use it to criticize or ridicule them etc, but the same thing may happen in reverse so its a double edged sword.
     
    *GG* likes this.
  3. RogerBlack

    RogerBlack Senior Member

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    It varies dramatically indeed.
    I have online persona that vary from 'skilled engineer' (Which I try to use what learning I have achieved carefully to help others) to 'normal person' that doesn't talk about their work, to significantly disabled and housebound.

    I almost don't care about privacy on my illness, other than as it may be read by those determining my eligibility for benefits.

    I am not required to tell the truth, or explain how long doing certain things took me online, or explain how this was the only thing of significance I've done in the past 6 months.

    Casual reading by someone trying to work out my level of disability could rapidly lead them to the conclusion that I'm not significantly disabled, as I'm representing things I wish to do but have no hope as realistic short-term plans, things I planned in detail as actually finished, ...

    On the other hand, I would be quite happy releasing my data to efforts like the personal genome project.
    http://www.personalgenomes.org/ Which is a project to release whole genomes and other data of people along with their information.
     

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