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Thread: Response: How one surgeon discusses BrAIST

  1. #76
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    "not that that would help you"
    "all this went right past you"
    "intellectual honesty"
    "you still don't get it".

    These are NOT calling names. These are trying to back someone off from ENDLESSLY making reckless comments.

    These comments demonstrably do NOT help her for her lack of experience.
    My comments DID go past her (repeating irrelevant issues that I am NOT arguing with).
    She is NOT intellectually honest in labeling similar comments as ad hom in one case and "uncharitable" in the other just motivated by personal bias.
    She STILL does not get WHY my comments and those of Dr. Mcintire are along one line and her comments are along another line.

    I will continue to use phrases like this when clueless criticism is made against myself and Dr. McIntire.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  2. #77
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    Quote Originally Posted by Pooka1 View Post
    These are NOT calling names.

    That's certainly fair - and I didn't mean to imply that they were. I was addressing the fact that HD felt that he was being called names, but that others use much stronger language.

    For instance, just in going over TWO threads (this one and the one about driving people away), you were referred to as:

    "pathetic" (multiple times)

    "unmoral" (multiple times)

    a "non-surgical defamer"

    a "fraud"

    "irrational"

    and it was alleged that you were trying to "intentionally confuse" people

    Not to mention all the times it was mentioned that in this same poster's view, you should be banned from here or that the forum would be better off without you (which it would not)!

    The point I was making is that if we are all being asked to play nice, it has to apply to ALL of us.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

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  3. #78
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    Quote Originally Posted by mariaf View Post
    But I totally agree with you that we should ALL stick to the subject matter and not get into personalities. As I said, it's just not productive.
    Agreed. And you have every right to tell any poster that you expect to be treated in a certain way. We're not moderated here, so we all just have to be clear about what we find acceptable and what we do not find acceptable.

  4. #79
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    Thanks for this, Maria. Good points.

    Quote Originally Posted by mariaf View Post
    That's certainly fair - and I didn't mean to imply that they were. I was addressing the fact that HD felt that he was being called names, but that others use much stronger language.

    For instance, just in going over TWO threads (this one and the one about driving people away), you were referred to as:

    "pathetic" (multiple times)

    "unmoral" (multiple times)

    a "non-surgical defamer"

    a "fraud"

    "irrational"

    and it was alleged that you were trying to "intentionally confuse" people

    Not to mention all the times it was mentioned that in this same poster's view, you should be banned from here or that the forum would be better off without you (which it would not)!

    The point I was making is that if we are all being asked to play nice, it has to apply to ALL of us.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  5. #80
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    Quote Originally Posted by Pooka1 View Post
    Thanks for this, Maria. Good points.
    I work in a large office - and we always say that it's OK to make rules, even lots and lots of rules, just as long as they apply to everyone.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  6. #81
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    Whether you consider your characterizations of me name calling or ad hominem, they're still at the bottom of the hierarchy. That is, instead of just engaging around the central facts of the discussion, you're engaged with characterizing me (in order to disqualify my input).

    Again, you're certainly welcome to do that, but I've no interest in a continuing a discussion about my character or my ability to make sense of information.

    Back to the main point of the discussion about BrAIST, whatever you believe to be your extra qualifications to make sense of that report, your conjectures led you to what you now believe to be an incorrect conclusion. That is, you extrapolated and conjectured about the data which you felt were missing from the report, and used that extrapolation and conjecture to reach the conclusion that this probably meant that braces weren't really effective and that the authors future reports would show that conclusion. Yesterday, you stated that that conclusion was likely wrong.

    So, whatever you believe to be my lack of qualifications to make sense of that report, I was able to use my (according to you) lesser intelligence to reach what you now believe to be the correct conclusion. That the authors correctly represented the effectiveness of bracing and that future reports from them will likely support this conclusion.

    And this is the place in which I frequently find myself with you. You make some statement, based on conjecture, and attack my character when I disagree with you. And then, a few hours (as in the night time bracing discussion or the Boachie quote), or a few months (as in this case), it turns out that your position was not supported and mine was.

    And that's my central complaint. You are *often* wrong. And yet, each time you enter a discussion, you are profoundly certain of your position and will defend it by dropping to the bottom of the hierarchy and attacking character. That leaves anyone who wants to correct your (often wrong) statements in the position of having their character attacked just to place facts in evidence. And *that* has the effect of leaving your (often wrong and emphatic) statements all over the board, because the process of correcting them is just grueling.

  7. #82
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    Quote Originally Posted by mariaf View Post
    I work in a large office - and we always say that it's OK to make rules, even lots and lots of rules, just as long as they apply to everyone.
    And that makes sense for an office with a central authority enforcing rules. That's not where we are - if there are rules, I'm not aware of any central authority enforcing them. That leaves all of us with the ability (and the right) only to require certain things from people interacting directly with us.

    Everyone else can decide for themselves what is and is not acceptable for them - I don't pretend to know, and I don't have the power to enforce - but I do get to decide what is acceptable to me from someone conversing with me.

  8. #83
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    Quote Originally Posted by hdugger View Post
    And that makes sense for an office with a central authority enforcing rules. That's not where we are - if there are rules, I'm not aware of any central authority enforcing them. That leaves all of us with the ability (and the right) only to require certain things from people interacting directly with us.

    Everyone else can decide for themselves what is and is not acceptable for them - I don't pretend to know, and I don't have the power to enforce - but I do get to decide what is acceptable to me from someone conversing with me.
    All true, but I think you were missing my point.

    Even if, for example, Sharon is OK with all the name calling and wild accusations hurled at her, they distract from the topic(s) being discussed and are harmful to the integrity of the forum - things that should concern all of us.

    Why are they necessary? Why should a new member have to sort through so much clutter?

    Not to mention the fact that they cause the poster to lose credibility with most of us (that's not my concern), but I guess I just can't understand why this sort of thing is necessary. And I get what you are saying about wanting to stand up for yourself, but it's hard to hear anyone talk about being attacked and not have these unfounded attacks on Sharon come to mind. Rarely is there a single thread where she posts that this childish nonsense doesn't follow. We are all supposed to be rational, mature adults so I'm sorry, yes, it bothers me as it has no place here. It helps nobody.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  9. #84
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    Quote Originally Posted by mariaf View Post
    Why should a new member have to sort through so much clutter?.
    You'd have to take that up with Linda or the people at NSF. Similar questions have been raised for years here. What I've heard in the past about other issues and posters is that everyone is expected to handle perceived problems themselves. And also that, if you feel that specific post rises to the level of some violation of code of conduct, Linda has asked that it be flagged.

    Beyond that, we can only control ourselves and ask that people talking to us follow certain guidelines in order to maintain our interest.

    I agree that it's odd for a support forum, but every time the issue has been raised over the years (for lots of different posters and lots of different situations) that's what I've heard. I've also been told (and know) that the Scoliosis Support forum is moderated very differently and that posters who feel that a support forum should enforce a more supportive code of conduct should participate over there. Which is what I do when I want to talk about issues related to my son. That is, if I want *support*, I participate in the moderated forum. I have not found this forum to be particularly supportive. But it does have interesting discussion about research, so I participate in those discussion over here.

  10. #85
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    I get what you are saying - and normally, I don't pay much attention to those comments and attacks (unless they are directed at me, which as I stated earlier, at times they are - and even then, I have a pretty thick skin), but it just seemed relevant to a discussion about the tone of some posts here. And more importantly, I believe it is in the best interests of the forum if they cease, but that's just me.
    Last edited by mariaf; 01-15-2014 at 01:13 PM.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  11. #86
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    [QUOTE=mariaf;156468but it just seemed relevant to a discussion about the tone of some posts here.[/QUOTE]

    My point (and interest) is not in tone, per se. I understand that people get upset in support forums.

    My point (and interest) is that characterizations and name calling are being used as tools to keep bad information in play. And it's the bad information that I am particularly concerned about, because, apparently, unless I get my armor on and wade in to correct this bad information, it will remain and may well be used by parents and patients trying to make a decision.

    So, I'm not so interested in tone by itself, although I certainly understand you saying that it's bothersome to you. I'm really just interested in keeping the information on the forum as evidence-supported as possible. My comments about falling down the hierarchy are that, in order just to keep the facts straight, I have to wade through a constant onslaught of posts about my character and a really heated battle (not on my side) all meant to defend things which simply are not true.

    Again,

    No, BrAIST didn't study nighttime braces
    No, Boachie didn't say that certain surgeries were one-stop shopping
    No, Mooney did not engage in any untoward behavior, and thus his studies should not be re-examined through some ethical filter
    No, wearing a brace is not expected to *cause* you to progress once you remove it
    No, bracing is not experimental
    No, tethering is not well-supported in the research
    Even, no, (apparently even Pooka1 concurs now) the central findings of BrAIST are not expected to be disproven in their future reports

    and so on and so on. And that's just the last few weeks.

    So, my complaint is not about tone. I can't control what people think of me - so I've really just let that go. I would hope they judge me on my own words and not someone else's characterization of me, but I can't affect that decision and so I don't spend time on it.

    But I *do* care very much that people entering a support forum are not told, emphatically and repeatedly, untrue and unsupported things about evidence which directly affects their decisions. I would not like to think, for example, that someone would give up on nightbracing just because our most emphatic member had gotten some idea in her head that the BrAIST study indicated it didn't work. And, on the topic of misleading teens, I would not like to think that *any* parent is promising their child that they'll never experience another back problem in their life because they read on the NSF that a respected surgeon (Boachie) had offered up some kind of lifetime guarantee.

    Anyway, that's my concern.

  12. #87
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    Quote Originally Posted by hdugger View Post
    I'm really just interested in keeping the information on the forum as evidence-supported as possible. My comments about falling down the hierarchy are that, in order just to keep the facts straight, I have to wade through a constant onslaught of posts about my character.....
    To me, this is close to the same thing I was saying (maybe not exactly the same, but close) - namely, that we should all be discussing topics, and leave personalities out of it, lest other members have to wade through a bunch of BS to uncover the facts.
    mariaf305@yahoo.com
    Mom to David, age 17, braced June 2000 to March 2004
    Vertebral Body Stapling 3/10/04 for 40 degree curve (currently mid 20's)

    https://www.facebook.com/groups/ScoliosisTethering/

    http://pediatricspinefoundation.org/

  13. #88
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    Quote Originally Posted by hdugger View Post
    No, BrAIST didn't study nighttime braces
    No, Boachie didn't say that certain surgeries were one-stop shopping
    No, Mooney did not engage in any untoward behavior, and thus his studies should not be re-examined through some ethical filter
    No, wearing a brace is not expected to *cause* you to progress once you remove it
    No, bracing is not experimental
    No, tethering is not well-supported in the research
    Even, no, (apparently even Pooka1 concurs now) the central findings of BrAIST are not expected to be disproven in their future reports
    I was wrong once, was unclear (and cleared it up) once, and the rest are mischaracterizing my comments or you being WRONG. DIShonest.

    I could develop a list for you too that would be much longer where you are flat out WRONG.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
    Answer: Medicine


    "We are all African."

  14. #89
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    Quote Originally Posted by mariaf View Post
    lest other members have to wade through a bunch of BS to uncover the facts.
    I think we're saying something different. I think you're saying that the back and forth makes it hard to locate the real information. I'm saying that the information, itself, is not the sort of thing I'd encourage someone to locate. In fact, I'd almost say that, given the quality of the information being shared, I'm not sure I care that much whether it's easy for people to get to it.

    Again, that's not to say that you don't have a right to be concerned about what you're concerned about. But I don't think our concerns are the same.

  15. #90
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    Quote Originally Posted by Pooka1 View Post
    DIShonest..
    Personal invective is not evidence.

    If you share evidence that I've said something about treatment which is just flatly wrong and misleading, please share that so that I can evaluate it, for myself, and make corrections in anything which I deem to be misleading.

    Without that, you're simply calling names. Go find someone else who wants to engage in that. Come back when you have something substantive to discuss.

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