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  1. #1
    Senior Member redhotoz's Avatar
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    Default About the past: Important reading......

    I have received the following message and asked if it could be posted to the Rosacea Forum. This is simply a method of delivery, not an opening for discussion here on the Rosacea Forum, as the author wishes to remain anonymous until publication date.

    If you wish to participate in this research, please e-mail the author as detailed below.

    "Hi.

    I am the researcher whose book project was mentioned on your board late last year. To clarify, it isn't specifically about one person, one group, or one illness. It is a broad-based study of communication problems and interpersonal and inter-group conflict within a network of computer-mediated health support boards. It charts the escalating clashes that occurred between May 2005 and May 2007 within the internet-based community, and explores the ways group processes helped shape behavioral change, from individual responses and the development of alliances through to the drawing of battle lines and the resultant "rosacea wars".

    It is a detailed analysis of what can go wrong when people suffering from a range of health problems (primarily rosacea, but also facial flushing, blushing, hyperhidrosis, and ETS surgery) share over-lapping internet sites, yet may have divergent interests and very different needs. It analyzes the psychological effects on the community of the introduction of allegations of Munchausen by Internet and financial impropriety, and assesses the significance these had at individual and collective levels.

    To keep things focused, the writing to date has been based mainly on statements posted on the boards. Anything posted on public message boards is in the public domain and can be freely quoted, although my preference will be to withhold the names of writers unless they played a prominent role in events or have given permission to use their names. Additional material has been drawn from the web sites of Dr. Nase and the Debunkers. Information quoted from these web sites is covered by the law permitting brief, properly credited, quotes for review or critical purposes.

    It is now time to bring in personal perspectives. I will be contacting Dr. Nase and the Debunkers with questionnaires and a request for email interviews. If they do not wish to assist, I am willing to consider accepting statements from them to include as an appendix.

    I would appreciate hearing from anyone who used any of the three internet groups concerned - Rosacea Support, Rosacea Forum, ESFB - between May 2005 and May 2007. My main interest is in knowing:

    1) Which of the three boards have you used, and roughly when?
    2) For what reasons? (e.g. checking treatment options, contacting people with the same condition, easing sense of isolation, other)
    3) What were your opinions when you first became aware of the controversy?
    4) If your opinions later changed, what were the main reasons?
    5) Is there anything else you want to say on the subject?

    A general questionnaire is available on request. If you want any part of your response to be treated only as background material, please mark it "Confidential". If you are willing to be quoted, and/or have your real name or internet username included in the book, please state this.

    Lastly, please note that I am seeking information, not providing it. I am not revealing my name or any other details until publication date.

    Thank you for any assistance you are willing to offer.

    MEP
    ( mep3000@gmail.com )"

  2. #2
    Senior Member redhotoz's Avatar
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    Default ABOUT THE PAST: IMPORTANT READING...

    It has been requested by members here that ONE thread be created about the 'past', so that new members can understand why some of the old threads are...well...so agro.

    The following link sums up what happened:

    http://www.debunkingnase.org/

    It is a lot of reading, particularly the court transcript but will give a good insight into what happened in the past.

    After reading the above link, hopefully it will shed more light on the subject and ultimately a safer and happier place to reside here in the Rosacea Forum.

    redhotoz
    Forum Moderator

  3. #3
    Senior Member Skywolf's Avatar
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    He did a lot of good, let that be remembered, before everything went so horribly, horribly wrong. Dont let his name scare you away from buying his book, its a great book that gives lots of good information about rosacea for those new to this.
    Besides the debunking site, you can read what has happened here in the archives, mostly in the meta section. A lot of threads have been deleted, but there is enough to get the jist of the whole terrible situation.

    Laura

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    Laura,
    thank you for pointing out that people can also get information from the archives. This is important as it is always informative to read a lot of views from different people. If new members would only read the debunking-side, that would be onesided. It would be a shame to miss all the good informations that he has given, including his book.

    Barbara

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    Senior Member Peter's Avatar
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    Quote Originally Posted by Skywolf
    Dont let his name scare you away from buying his book, its a great book that gives lots of good information about rosacea for those new to this.

    Laura
    Hello Laura

    Sorry I don't agree with you regarding the book. When I received my copy I just considered it an expensive reference book, which was really essentially a compilation of other people's work and research. I am sure it did help some people, but for me it didn't tell me anything particularly new and I couldn't really see the connection between his shoulder surgery and the other dramatic moments in his life. Looking back it was probably the first clear evidence that something strange was going on.

    There are other good books out there as well on rosacea but for anybody now with access to the internet, there is a mass of information to be found plus of course this Forum and the RSG to ask questions and receive help.

    Anyway my questionnaire that I requested has just arrived so that will keep me occupied for the next few days. Hopefully if what I read earlier today happens, then it looks like the whole truth will be presented for all to see and that can only be a good thing for the future of any rosacea sufferer and the long term attempts to discover the cause and eventual cure.

    Thanks

    Peter

  6. #6
    Senior Member Skywolf's Avatar
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    Peter,
    I feel different about his book. Yes, It is a compilation, but it takes time to gather the info put it into book form, etc. I just think we need to give credit where credit is due. For you it may have rehased all the treatments, but for new people, not versed on this , not sayign it has all the answers, its a jumping off piont. Im not saying Nase is a nice guy, I hate what he did. and still does, to our community. He sort of started this board , almost ended it, got other boards messed up, lives that depended on the guru to help messed up, I hate all that, HATE IT.
    But if you sift through it all, there is some good he did. It went so tragicaly wrong. Its sad.

    Laura

  7. #7
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    Quote Originally Posted by Peter
    Anyway my questionnaire that I requested has just arrived so that will keep me occupied for the next few days. Hopefully if what I read earlier today happens, then it looks like the whole truth will be presented for all to see and that can only be a good thing for the future of any rosacea sufferer and the long term attempts to discover the cause and eventual cure.
    Hey Peter - sorry to say that I have missed many of the exciting PM's that you and Jen have been receiving - what a bugger!

    What are you talking about, in the above quote? What did you read earlier today? Where did you get a qestionnaire? What truth will be presented?

    Inquiring minds want to know - I can see that my vacation from the boards has had me missing a few things!

    Millie

  8. #8
    Senior Member redhotoz's Avatar
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    WHOA!!!!!

    Verrrrrrrrrry interesting. a BOOK? Wow.

  10. #10
    Senior Member fut's Avatar
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    I'd just like to chime in and say I loved Dr. Nase's book - yes lots of it was a compilation of others research but that is what I actually liked about it.

    I recommend his book to any newbie out there.

    You can also visit the Rosacea-support forums to see his posts made there

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