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Thread: The Braist Study

  1. #181
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    Quote Originally Posted by hdugger View Post
    h? Because, as best I can determine, the rules are that researchers who you disagree with are idiots/unethetical and anyone who publishes their research isn't doing their job, while researchers you agree with must be treated with absolute and utter respect or face mocking and parody.
    I stand on the record.
    Sharon, mother of identical twin girls with scoliosis

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  2. #182
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    Quote Originally Posted by hdugger View Post
    crapping
    We have very different definitions of "crapping on researchers", by the way. I also think you are avoiding the obvious point.
    Sharon, mother of identical twin girls with scoliosis

    No island of sanity.

    Question: What do you call alternative medicine that works?
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    "We are all African."

  3. #183
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    Quote Originally Posted by leahdragonfly View Post
    Here is one quick example in response to your request up-stream, this from flerc who is callous in suggesting wide-spread use of bracing even though the Braist researchers state their evidence shows that many kids are being braced unnecessarily.
    I'm not trying to be thick, but you're really going to have to go through this sentence by sentence to show me how this is callous.

    Let me parse through it:

    "If studies are showing that braces are unecessary used in a high percentage, they also shows greater chances to avoid surgery using it."

    That appears to just be a flat reading of the study. It acknowledges what the study also acknowledges - that braces are used unnecessarily in a high percentage of cases - while also acknowledging the other major conclusion of the study - that they greatly improve the chances of avoiding surgery.

    Next sentence:

    "Both studies conclusions should to be taken into account for parents evaluating the convenience of using braces or not."

    That seems pretty reasonable to me. I think I said the exact same thing.

    Is it this that you consider callous:

    "What would be really unethical is to leave parents without this non surgical option to avoid surgery."

    This is Flerc's opinion based on the study results, and he does use the word "unethical" which can be a little charged, but it doesn't seem callous to me. He's already acknowledged that braces are over-prescribed. He's saying that braces should be made available to patients who want to avoid surgery. Unless you feel that braces should not be made available, I don't quite see what's wrong with the statement. I will say that I, likewise, would consider it unethical to not allow patients to to choose bracing in order to avoid surgery.

    So, again, I don't mean to be dense, but I'm not seeing the problem.

    For the rest, I haven't had to talk my son through either bracing or surgery, but just from watching the forums I don't get the sense that parents are any better or worse informed about the risk/benefit of bracing then they are about any other treatment (watch and wait, surgery, etc). People show up on this forum after having been told the damndest things as teens about their chances of avoiding surgery as an adult. That's a problem in every treatment area - it's not something unique to bracing.

  4. #184
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    Quote Originally Posted by Pooka1 View Post
    We have very different definitions of "crapping on researchers", by the way.
    You're right. Your statement goes beyond crapping.

    I can't imagine a more serious charge leveled against a researcher than that they are deliberately falsifying or at least encouraging a false reading of their data because of political motives, nor a more serious charge being leveled against their peers who are reviewing the study then that they are utterly abdicating their responsibility to science by allow such a study to be published. It's not just crapping - it's a serious allegation, possibly straying into slander/libel (can't recall which it is for the written word). If there is hard evidence to back up your charge, I strongly suggest you produce it. If you're slandering/libelling based on *conjecture* I'd just as strongly suggest you stop.
    Last edited by hdugger; 10-20-2013 at 01:09 PM.

  5. #185
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    Quote Originally Posted by hdugger View Post
    You're right. Your statement goes beyond crapping.

    I can't imagine a more serious charge leveled against a researcher than that they are deliberately falsifying or at least encouraging a false reading of their data because of political motives, nor a more serious charge being leveled against their peers who are reviewing the study then that they are utterly abdicating their responsibility to science by allow such a study to be published. It's not just crapping - it's a serious allegation, possibly straying into slander/libel (can't recall which it is for the written word). If there is hard evidence to back up your charge, I strongly suggest you produce it. If you're slandering/libelling based on *conjecture* I'd just as strongly suggest you stop.
    What you are missing is this is not falsifying data or a false reading of the data. The data are what they are. That's your misunderstanding of my comments. Anyone working with data will tell you that it can be presented in various ways. The researchers chose one way. Everyone usually chooses one way.

    Dr. McIntire, working it this field stated: (emphasis added).. the first comment appears to address the per review in part...

    They don't publish the curve characteristics at the end of treatment.... and that makes it in the NEJM.... I can not believe this....... They don't calculate any type of "curve-delta". If it's ok to do that because the success/failure classification is >50, then why would it be necessary to include the curve sizes at baseline? Why publish any data at all? Why not just say, "Curves were <40 at the beginning and 75% were <50 at the end. Trust us."
    I side with you (Pooka) on this one. When you don't report data that is easily calculated and meaningful, there is a reason. ANY data from the endpoint concerning curve size is absent in the article and supplementary material.
    The baseline data has plenty of detail. There is a maturity scale as well as different curve types and whatnot. Either in the paper or in the supplementary info. MY critique is primarily with the end point data. The average curve at baseline was ~35 in all groups (IIRC). The end point curve size would be good to know, although I don't think average is the best measure for curve size. Median is probably better unless the data are REALLY normally distributed.
    Again, what you (hdugger) are missing is this is not falsifying data or a false reading of the data. The data are what they are. That's your misunderstanding of my comments. Anyone working with data will tell you that it can be presented in various ways. The researchers chose one way. Everyone usually chooses one way.

    Here is my best explanation for not including critical data in the publication:

    It occurred to me that Weinstein/Dolan/et al. might be planning more publications. They almost certainly are in my opinion. I am guessing that is almost certainly the case as the first publication is really just an extended abstract because they don't show the deltas.
    Here is Dr. McIntire again which I never disagreed with... (emphasis added)

    As far as any kind of nefarious motives, I tend to side with the scientists and give them the benefit of the doubt. It's not that I doubt their data as much as I question how meaningful it is if "success" is determined as <50. If the pre-treatment group is 33 and the "success" group is 48, well then I'm not sure I'd consider that to be a great outcome. The brace group had fewer surgeries than the observation group, and I think that is real. I like the creativity they used to randomize or to self select the treatment. I like the stratification of brace wearers to time in brace. I think they did an amazing amount of work to do a serious study and to control for a BUNCH of things are have been traditionally difficult, if not impossible, to do. They might have had a very strict limit on the amount of tables and figures they could have, which is why they probably had the supplemental info. So I WANT to say they left out the end point data as somewhat of an oversight because they had a bunch of other stuff to report. But, having published, the scientist knows their data better than anyone. To not mention anything about the end point other than success/failure percentage.... makes it tough to believe it was an oversight and probably means it brings the results into question/doubt. It would be great if I were wrong.
    And I'll point out that publishing the average end points would add ONE LINE to the table but would require at least one paragraph to explain. So maybe there is a space limitation but I would think they would drop something else out before that. Not my field, their call.

    Finally, you CONTINUE to make this about me using tenuous, if not completely ridiculous examples. Your breathless accusations to avoid responding to my points are not getting you anywhere. I could go back and make a list of points you have avoided. I will continue to point this out as long as you continue to do this.
    Last edited by Pooka1; 10-20-2013 at 02:38 PM.
    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."

  6. #186
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    Here is my best explanation for not including critical data in the publication:

    It occurred to me that Weinstein/Dolan/et al. might be planning more publications. They almost certainly are in my opinion. I am guessing that is almost certainly the case as the first publication is really just an extended abstract because they don't show the deltas.
    By the way I never faulted them on this (several publications) and never would. This was a very large study and I think they should get as many publications from it as possible.

    There are several very strong points in this study and it is probably the best done to date. The subgroups are very well matched on many characteristics because they had largish groups. The issue is not the data. The issue is the meaning of the data. This is what hdugger is missing in her comments about my comments.

    And I bet the researchers do want to keep track of all the patients and future outcomes. They want answers as do everyone else.
    Last edited by Pooka1; 10-20-2013 at 02:13 PM.
    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."

  7. #187
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    Quote Originally Posted by hdugger View Post
    it's a serious allegation, possibly straying into slander/libel (can't recall which it is for the written word).
    I recall you said the same thing about my (factual) comments about MAGEC. Called it libel/slander and suggested someone report me to the company so I can be sued.

    Is this new case more or less tight than that one? Just curious.
    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."

  8. #188
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    Quote Originally Posted by Pooka1 View Post
    I recall you said the same thing about my (factual) comments about MAGEC. Called it libel/slander and suggested someone report me to the company so I can be sued..
    I hardly remember discussing the MAGEC study, but I certainly could have.

    I can pretty much guarantee that I didn't suggest someone "report you to the company so that you can be sued." I may well have suggested that you opened yourself up to such a charge. I'd say it again in this case - suggesting that someone has construed the data in a certain way or failed to include data which would change the conclusion of their study because they succumbed to political pressure is a serious charge.

    I used to moderate forums, and I have a pretty good sense of the kinds of posts we were forced to delete because they opened us up to charges of slander/libel. This is that sort of claim.

    I mention this not because you're going to be hauled into court, but because I want to stress that it's not just some nit-picking remark and that it rises to a higher level of seriousness then just assuming that you might know more then a researcher - which is the worst thing that Dingo is accused of.

    None of this is the point, though and I'm boring myself again. My point was simply that I did not find mocking a parent in support forum acceptable behavior, and I did not accept your explanation that he'd somehow brought it on myself by breaking the completely inflexible rule that all forum members adhered to that they were not to say bad things about hard-working researchers. There is no such rule, and even if such a rule existed and was adhered to, it would not excuse the behavior.

    Mocking parents in a support forum is not acceptable behavior, and your attempt to rationalize it fails to explain or excuse it. That's all I have to say on this topic.

  9. #189
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    Quote Originally Posted by hdugger View Post
    I'd say it again in this case - suggesting that someone has construed the data in a certain way or failed to include data which would change the conclusion of their study because they succumbed to political pressure is a serious charge.
    First of all I never suggested most of that. I do stand by the politics comment.

    Politics is not a serious claim unless the authors are making money. That isn't the case here. All data have to be presented one way or the other. All these medical articles are driven by some politics in my opinion. Most if not all these researchers are motivated to show the data in the way they honestly feel is most helpful. That is not bad per se. You are not understanding any of this.

    How do Dr. McIntire's comments differ from what I said? Were they libelous/slanderous?

    There is an unfortunate coincidence between NOT publishing the final curve magnitudes and the fact that they concluded bracing is "successful." That is prime facie political in my opinion though obviously not unprofessional. It is successful according to their data and their definitions. But there is a larger meaning for successful that they are well aware of and I am certainly will address in future publications.

    And despite the unfortunate coincidence, I do not think they are going to set themselves up to be shot down. The fact it came out this way actually suggests that maybe the final curve magnitudes are not that bad. They know they would be crucified if they were bad given the first publication. They aren't crazy.
    Last edited by Pooka1; 10-20-2013 at 02:36 PM.
    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."

  10. #190
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    Quote Originally Posted by hdugger View Post
    I hardly remember discussing the MAGEC study, but I certainly could have.
    Your comment was in this thread before you deleted the post during one of you self-propelled post deletion binges. How many posts of yours did you delete in those episodes? I'm guessing upwards or 200.

    http://www.scoliosis.org/forum/showt...ncluding-MAGEC

    Or maybe you deleted the post as soon as I mentioned it. That's my guess.
    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."

  11. #191
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    Quote Originally Posted by Pooka1 View Post
    Your comment was in this thread before you deleted the post during one of you self-propelled post deletion binges. How many posts of yours did you delete in those episodes? I'm guessing upwards or 200.

    http://www.scoliosis.org/forum/showt...ncluding-MAGEC

    Or maybe you deleted the post as soon as I mentioned it. That's my guess.
    And conjecture alley opens up into the conjecture freeway, a place where people nefariously suppress data, delete posts, and otherwise try to befuddle and confuse the honest folk of NSF.

    Actually, the mention of libel is Digno's in post #9 and then again in #14. He says that your statements could open the Eclipse company to damage, and that Linda might want to attend to such statements in her role as moderator. No one mentions that you ought to be reported to the company so that they can sue you, and I don't participate in the conversation at all, as best I can tell, and you respond to everyone who participates, so I'm pretty sure I was never there.

    But, I don't mind being confused with Dingo, and I don't really care that you took such a sharp turn onto conjecture highway that you:

    * conjectured what was said
    * conjectured the person who said it
    * conjectured the actions taken by said conjectured person to remove conjectured evidence which it appears never existed

    I don't believe I've ever gone back and deleted a post of mine in order to win an argument. I don't much mind looking like an idiot. I *did* delete hundreds of posts in May (and would have deleted more, but some of the threads were locked). I did it for the reasons I stated above: Every time I fail to respond to a mis-statment or wild conjecture, every time I fail to defend against a cruelty or otherwise let stand things which I do not believe ought to be let stand, I appear to be condoning the behavior.

    In my early time at NSF, I engaged every time one of these events happened. After awhile, it became too time consuming and, more importantly, eventually too heart-breaking to read the same things over and over again, so I put a large number of partiicipants, including you, on Ignore. That solved *my* problem, but I realize, in retrospect, that it made *the* problem much much worse. Now there were people saying all manner of untrue and hurtful things and *no one* was challenging it. Someone scanning through those discussion would feel as if everyone in the forum were in agreement with those statements, since no one stepped in to challenge them.

    Flerc called me out on that, and he was right (hence the signature that I had for a long time). I'd protected myself but ended up harming people by doing so.

    So, I went back and deleted every post that I could, and I wrote to NSF, and I participated in the long and uncomfortable thread where I really tried to call out what I saw going on, so that I said it once and in one place as clearly as I could in case no one at NSF responded and I had to leave the forum.

    No one responded and I left and pretty much everyone pursuing any treatment other than surgery left. I have no interest in becoming a regular participant again, I assume to the utter relief of most. Simply, the forum does not feel safe, which is really the minimum requirement, for me, for a support forum.

    I returned this weekend with the intent to make a few corrections to this thread, and then leave when the amount of "posts needing challenging" outstripped by ability to challenge. I've hit that point. It is lovely and sunny in Oregon today. My dogs are resting quietly. I'm going to go out and take pictures of birds, revel in the sunshine, and just accept that there's nothing more I can do here.

  12. #192
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    Quote Originally Posted by Pooka1 View Post
    How many posts of yours did you delete in those episodes? I'm guessing upwards or 200.
    Excelent practice if we would be talking about you.. but about how many thousands should to be talking in order to clean this forum? But anyway what you did is done.

    Hdugger don't waste your time taking this kind of discussions in this bad intentioned forum, specially with this faker. Remember it cannot be changed from inside. This thread was useful to show what it showed, endpoint

  13. #193
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    Quote Originally Posted by hdugger View Post
    And conjecture alley opens up into the conjecture freeway, a place where people nefariously suppress data, delete posts, and otherwise try to befuddle and confuse the honest folk of NSF.

    Actually, the mention of libel is Digno's in post #9 and then again in #14.
    You deleted your post on that issue.

    It was something like how can they sue her if they don't know about it? You were egging them on to send the thread to the company because you are so sweet.

    I remember it because it was similar in construction to what I say when I leave a place... "How can you miss me if I don't go away?"
    Last edited by Pooka1; 10-20-2013 at 05:56 PM.
    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. #194
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    Quote Originally Posted by Pooka1 View Post
    You deleted your post on that issue.

    It was something like how can they sue her if they don't know about it? You were egging them on to send the thread to the company because you are so sweet.

    I remember it because it was similar in construction to what I say when I leave a place... "How can you miss me if I don't go away?"
    I hate to see you racking your brain over this.

    Might it have been this?

    "I'm pretty sure UC Irvine was the party to license the technology to Ellipse Technologies, a privately held company located near UC Irvine facilities. Probably privately held with the parties involved. UC Irvine will know how to protect their investments and their faculty members' reputations if they become aware of it."

  15. #195
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    Quote Originally Posted by leahdragonfly View Post
    Anyone who has worn a brace themselves or had a child who had to wear a brace knows it is a very difficult treatment, period. You will not find one child or teen out there who loves their brace and is happy they got one. Some teens even end up with panic attacks or major depression because of their brace. Others appear to accept it but suffer quietly inside every day. This is why I advocate for strenuous and accurate research to pinpoint which exact kids will benefit from bracing, and spare all the rest from a difficult, unnecessary treatment.
    I agree with this - and I think this is why some of us feel so strongly that bracing any number of kids unnecessarily is something to be taken very seriously. I had one mom tell me that she thanked the doctor who performed her daughter's tethering surgery (thus, making it no longer necessary for her to wear a brace) "for giving me my daughter back". She said her daughter went from being a happy, outgoing child before bracing, to being sullen, withdrawn and depressed once she had to wear the brace. There would be daily arguing, crying and it was putting a huge strain on the relationship between mother and daughter.

    I can say for my own son, that had he been braced his entire childhood (as was being suggested at one time), I do not believe for one minute that he would be the happy-go-lucky kid who loves to play baseball, is outgoing and always making new friends. He was much younger when he wore a brace and still asked me one day 'why am I the only kid in kindergarten with one of these'? I was beginning to see it was something he was self-conscious about, and I can only imagine how much harder it would have become as he got older.

    Heck, my daughter almost had a meltdown when she had to start high school with braces on her teeth! I think sometimes people forget just how difficult these years can be for kids without anything to make them feel different from their peers.

    I almost neglected to mention that in addition to the social and emotional aspects of bracing, there are other issues to consider. Some children (my son included) have experienced digestive issues. At one point, we had to rmember not to give him a large meal within 2-3 hours of bedtime or he'd end up vomiting. I know of other children with related digestive issues - or as one kid told her mom, she just didn't enjoy eating anymore. In addition to any discomfort, there is the challenge of dealing with hot summer weather. I can't imagine a kid in Florida dealing with bracing in that climate. I had one father (a highway cop in Maryland, whose daughter had VBS) tell me he figured he had an idea of what bracing felt like from wearing a bulletproof vest in the summer and that he would not want his child to endure that.

    Having said all this, like Gayle, I would never criticize a parent for choosing to brace their child, but it's not something I would ever want to do. And I must admit, sometimes my heart breaks for these kids.
    Last edited by mariaf; 10-22-2013 at 08:14 AM.
    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)

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