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Thread: Gene Associated With Adolescent Idiopathic Scoliosis Identified

  1. #136
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    Quote Originally Posted by Pooka1 View Post
    I stand for science and ration and reason and especially not bashing the only people who know what they are doing... the researchers. Not being a scoliosis researcher is no crime. This research section would improve a lot if folks truly accepted that.
    Certainly if I would want to promote the official western medicine, I would hire you! And this is not of course the best sample of your skill.. so much soft!

  2. #137
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    Quote Originally Posted by flerc View Post
    I would hire you!
    Correction: I would try to hire you!

    I don't want to be banned

  3. #138
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    I certainly hope the rants are over. WOW!

    In reply to comparing my two comments: There is a difference between responding to an idea by starting a thread and actually starting a thread aimed at a person by name. Yes, I'm referring to the "official western medicine" thread. It may be one thread, but it was aimed at Pooka and she was named in it as the offender.

    If people aren't named, then you can either apply it to yourself or someone else or not.

    I really don't understand what Mariaf or Susie*Bee did for anyone to be attacking them.

    I am not an evolutionist (although I used to be until I actually studied it). I'm not a young earth creationist, either. I don't care who knows this about me. Sharon knows it and doesn't attack me. I just don't talk about "evolution" (I just broke my own code) on the forum. Rather, I will talk about whatever theory or idea one may have on the subject, such as Natural Selection or Survival of the Fittest. These topics don't fit into the realm of using the scientific method. However, when science is applied to certain theories or ideas, I have no problem what-so-ever discussing it. The scientific method is flawed in the sense that not all topics can be tested out by using it. If something is introduced in a research paper that someone/anyone disagrees with, it's fair game. Attacking the person who posted the paper is not. If other papers are posted that refute a paper, I do not consider that a personal attack on the original poster, rather an attack on the authors/researchers who wrote it. Sharon is the most singled-out person on this forum, not Dingo.


    People are allowed to discuss faith on other parts of the forum. I see a LOT of "prayers needed" posts and people saying, "I'll pray for you." Pooka1 doesn't interrupt these posts or try to bury them. I have seen her engage in some of those threads to give support without dissing those that mention prayer. Mbeckoff's thread is a perfect example of that. I think we would all agree that she is a very well liked and respected member of this forum. I, personally, think "faith" has an integral part of a person's healing and well being. Not everyone's faith is the same, however, and we need to respect that. Pooka1's faith is in science and she's an outspoken atheist, we all know that. Other's believe in different god's. There are probably hundreds of religions behind the scenes of this forum in it's member. The point is, this is a forum about SCOLIOSIS, not a place to debate religion, evolution vs. creation or anything else OR criticize anyone for their belief in whatever. That needs to stop on all fronts. People can exchange e-mails or PM each other for that. My opinion.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  4. #139
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    Quote Originally Posted by Ballet Mom View Post
    Flerc,

    I'm sorry this forum has allowed people to be absolutely bullied and hounded off this site for over five years. My daughter was twelve and just diagnosed with scoliosis and had been directed to this site by her first orthopedic surgeon. She is now eighteen and graduating from high school. I was absolutely stunned and sickened to see the rampant bullying where certain people were gleefully bullying people off the site. I tried to stand up at that time to them, and as you can see, it has been a completely useless and futile effort.

    I agree with you completely about the dynamics of this forum, as do the many others who couldn't bring themselves to post because of the attacks that were sure to come.

    Every single thread gets buried on this site. It is totally useless.

    I'm sorry for you that you probably won't receive any help, I tried to help those being bullied and received sh_t in return. Good luck to you and your daughter, I hope you are able to find the help that you and your daughter need and deserve.
    Thanks Ballet Moon, you are really a good person. I imagined you stopped your goods posts against the Pooka's inmoral work here because what you said and I understand it. But certainly would be good you don't stop at all. I feel bad when it seems that only Hdugger understand me.. is good at least to hear what you are saying.. and really, I would not say it has been a completely useless and futile effort what you did. I heard yesterday something that liked me very much: the only wars we really lost are the wars we have abandoned. And none moral person here should to leave the fight against something so much inmoral as what she does every time.
    I hope the best for you and your daughter.. and you will think what I said you.
    Last edited by flerc; 05-18-2013 at 06:48 PM.

  5. #140
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    Quote Originally Posted by rohrer01 View Post
    I certainly hope the rants are over. WOW!

    In reply to comparing my two comments: There is a difference between responding to an idea by starting a thread and actually starting a thread aimed at a person by name. Yes, I'm referring to the "official western medicine" thread. It may be one thread, but it was aimed at Pooka and she was named in it as the offender.

    If people aren't named, then you can either apply it to yourself or someone else or not.
    Sorry, I really have not much time, I only have read this, I don't know from where it is coming from. May you explain me in a clear and brief way? Do you are saying again I have not mentioned Pooka1 in the thread I recently quoted?

  6. #141
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    Post #187 by Rohrer is very well written and I agree. Hopefully we can let it rest for the night and think about things. This is not a place to debate evolution, creation, or religion. It is for scoliosis and helping one another through it. Research on this forum should be, for the main part, limited to the realm of scoliosis or medicine or surgery that may touch upon it. That is my opinion. I think a lot of posts in the research section lately have been far afield from scoliosis. And I think we need to view each other as fellow adventurers on a journey into this field, not enemies. We need to show some teamwork. Some of this that I've been reading lately is reminding me of my 4th grade recess duty with "he said, she said" type drama-- only recess drama has gotten much worse than when you were children. We are adults and need to act with civility and courtesy even if we disagree. That's not too much to ask of people who are all in the same (scoliosis) boat. Thank goodness we weren't on the Titanic together-- we'd have all gone down. (A little levity, perhaps???) Let's stick together.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  7. #142
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    And I probably missed it all, for which I apologize. My problem in not keeping up with things. Flerc has every right to express his thoughts and be heard, just as Dingo does. I guess I am just tired (I am) and I am distressed by the factions. I was hoping for some peace. Probably it's not possible-- just wishful thinking. I will try to give my brain and heart some much needed rest from this drama for now. I wish there was a solution. All should be treated with respect, and that is all I have to say about it. Again, I'll mention Dr. Seuss's The Sneetches-- where the ones with the stars upon" thars" (their bellies) thought they were the best and wouldn't accept the plain bellied sneetches as being on their level at all. Until the end of the story... Seuss was always teaching lessons in his stories.
    67 and plugging along...
    2007 52° w/ severe lumbar stenosis & L2L3 lateral listhesis (side shift)
    5/4/07 posterior spinal fusion T2-L4 w/ laminectomies and osteotomies @L2L3, L3L4
    Dr. Kim Hammerberg, Rush Univ. Medical Center in Chicago

    Corrected to 15°
    CMT (type 2) DX in 2014, progressing
    NEW 10/2018 x-rays show spondylolisthesis at L4/L5 - Dr. DeWald is monitoring

    Click to view my pics: pics of scoli x-rays digital x-rays, and pics of me

  8. #143
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    hey Maria...did i mention to you that i might be "attacked" as well...
    now even positive statement cannot be tolerated by some...
    some people here seem pretty paranoid....such a shame...
    thought this was a research section...
    well, i think i have seen enuf of the attacks for now...
    no one is putting a stop to it, and i thought there were guidelines
    for posting on this forum, and not making things personal....
    when i know someone and that they are of good character and
    good heart, i do not like to see them called names and accused
    falsely....
    but i have read enuf....
    if no one reads a thread at all...does it still exist?

    jess

  9. #144
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    Quote Originally Posted by jrnyc View Post
    but i have read enuf....
    if no one reads a thread at all...does it still exist?

    jess
    Unfortunately, yes. Because there are lurkers. I'm guilty of lurking and saying I'm not going to get involved, then BAM I can't take it any more. The only way to stop it, sadly, would be to leave the forum. =( I see very interesting and baiting titles that I think I'm going to learn something great from and it turns out to be this. =( I'm done with this thread though. What else can anyone else say? So sad. =(

    There's a new guy on here that's super proactive and smart. Now that's the kind of stuff I like to see. His indecision about surgery has led him to look up some great information. He could be posting in the research section with all the good stuff that he's found. Such a nice young man, even if he doesn't think so. =)
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  10. #145
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    Quote Originally Posted by rohrer01 View Post
    Flerc also comes up with things that others maybe haven't thought of. I appreciate his ideas, too. But lately he's really been attacking me personally and I feel that he doesn't like me right now because he thinks I'm a co-conspirator with Sharon. I'm not. I don't know what to say about that. I think it is wrong to start a thread specifically aimed at ANY forum member. It wasn't generalized. She was named. That's why I came to her defense in the other thread.
    No, you don't understood what I was doimg. Probabaly because you not see or not want to recognize how much inmoral is the work done by your defendant.
    I wanted to get she leave all the threads where she does her work and say what she ever says, that is, doing her work only in that medical official thread. As I did in the thread which that thread come from, I thought to do the same in all threads so everyone could continue talking about the issue of the original thread and the fight would be encapsulated in that medical official thread.
    But of course she don't want to do it and I cannot force to do it.
    Precisely her work consisit in say what she ever says in every thread where people say something different about what official medicine may say. Is not clear for you? Just only see this thread. Does we are talking about genetics? Do you not see is exactly what she wants to happen?

    Why the hell I must to be dedicating time in saying this instead of in something productive? What the hell may I say to my wife when she says me I’m wasting my time here? It's fair for you? I need to talk about scoliosis in the biggest forum of the world.. if it would what it should. It’s fair for you? Is fair the unacceptable agressions good people recieved here? Is fair for you all good people that left this forum for this reason? Is fair for you that, as I really know, people that may share incredible improvements doing something don't having nothing to do with what your defendant promote, don't do it because they see what kind of forum is this? It seems it's fair for you since your defendant is the only one cause of that. Her fans could never do it alone. They are absolutely necessary in order to do that inmoral work but also absolutely insufficient without she.

    Sorry, I cannot believe you don’t see something so much obvious for anyone, you seems to be enough smart and of course understanding it or not, you are accomplice of her inmoral, harmful, unacceptable work.
    Every people on the world knowing her work here and not reacting against it are accomplices even they not realized it. This is the more 'inocent' level. Then the people supporting her posts not too much related with her work and saying she is smart, good person, honest.. Then the people supporting her comments directly related with her inmoral work and the people defending her against the people trying to do a not sick site of this forum. You are also in the higher level. And believe me, is sad for me to see it. You were always one of my favorite members here, but people supporting/defending the evil is part of it.
    Last edited by flerc; 05-19-2013 at 10:51 AM.

  11. #146
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    Quote Originally Posted by flerc View Post
    how much inmoral is the work done by your defendant.
    The word is "immoral." I am doing immoral work, not "inmoral." :-)
    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."

  12. #147
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    Quote Originally Posted by flerc View Post
    Sorry, I cannot believe you don’t see something so much obvious for anyone, you seems to be enough smart
    Since Pnuttro (biomedical researcher) left, Rohrer is our only lifeline to actual biology in this sandbox. It's her guarding the gates and keeping the biology discussions on track. All I can do it point out general science issues, the scientific method, how researchers talk, and obvious misunderstandings of the medical literature (e.g., concordance rates in twin types, terminology, etc.). Combined it is only a fraction of what Rohrer contributes to keep this ship from sinking.
    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."

  13. #148
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    Quote Originally Posted by Pooka1 View Post
    The word is "immoral." I am doing immoral work, not "inmoral." :-)
    I always confuse words that are similar in both idioms (inmoral in Spanish). I suppose you would not be the only one interpreting I wanted to say 'immoral'.. it would be hard to update all those posts.

  14. #149
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    I'll make a last response. No, she doesn't/they don't. Don't and never will. It's pointless and heartbreaking to reveal so much of yourself in order to try and make yourself clear. Too much for me, maybe not too much for you.

    I'm in agreement with your wife, though, it's a waste of your time to have to fight just to create one tiny space to post in. It's important, critical, that people feel they have options other then surgery - for those who choose a different solution, for those who simply feel they cannot go that way, and for those who actually cannot. But, this is not, will never, be a place where you can freely discuss those issues. Not exercise, not diet, not even standard treatment like bracing.

    At some point last night, I wondered what the reaction would be if every time anyone ventured on to the forum to ask about surgery I, oh so helpfully, just started going on about all of the terrible risks. "have you seen the revision forum?" "Do you know that teenagers fused into the lumber spine are extremely likely to require yet another one of these surgeries?" And so on and so on. Every time. Without fail. Anyone. Talked. About. Surgery. There I'd be with my helpful (and true!) pile of facts about the terrible risks of surgery. I estimate that I'd be able to do that, at most, for a week, before I had the whole forum up in arms. I wouldn't even be allowed to get to the point of inferring that people were bad parents for allowing their children to have surgery, or that they were foolish and illogical for not really looking at the facts right there in front of them in the revision forum. One week of just friendly helpful facts on Every. Damn. Post. about surgery, and I'd be surrounded with torches and pitchforks.

    But, the exactly same behavior towards non-surgical? Plus the constant manipulating insinuations of bad parenting and poor reasoning power. Towards Every. Damn. Post on any treatment other than surgery? Four solid years (since my count) and I can still hear the crickets chirping.

    It is choice to look at that every day and not to see. Nothing you say will ever make it visible.

    My son is at greater risk from having surgery then from not. Maybe some day that will change, but for now, that's the fact. I owe it to him to figure out something that won't make him worse. This is not, will never be, a place to do that.

    [In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]
    Last edited by hdugger; 05-23-2013 at 07:50 PM.

  15. #150
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    Quote Originally Posted by hdugger View Post
    This is not, will never be, a place to do that.
    Ayn Rand, Atlas Shrugged...they all left to make a better place. Left the eedjits to listen to their own squawking
    07/11: (10yrs) T40, L39, pelvic tilt, rotation T15 & L11
    11/11: Chiari 1 & syrinx, T35, L27, pelvis 0
    05/12: (11yrs) stopped brace, assessed T&L 25 - 30...>14lbs , >8 cm
    12/12: < 25 LC & TC, >14 cms, >20 lbs, neuro symptoms abated, but are there
    05/13: (12yrs) <25, >22cms height, puberty a year ago

    Avoid 'faith' in 'experts'. “In consequence of this error many persons pass for normal, and indeed for highly valuable members of society, who are incurably mad...”

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