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Thread: Research trends in IS etiology in 2000

  1. #1
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    Research trends in IS etiology in 2000

    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."

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    This is not my field and I have no pet hypotheses. That contrasts with the great run of other players in this sandbox who, comically, have an opinion without being in this field.

    The only relevant articles on IS etiology are the ones written by researchers in the field which, I'm sorry to say, lets out our estimable Dr. McIntire whose field is muscle physiology IIRC.

    In posting this article I tried to find a review article, as current as possible, that explains WHAT these guys are actually studying. It is very easy to get a completely wrong impression of what exactly is on the research bench when reading the bunnies on this issue.

    So you could say my position is whatever the actual guys in the field think is the issue. That differs from others in this sandbox in every way since they claim the researchers are somehow missing the boat or are otherwise idiots.

    What I think you are referring to w.r.t. me is that I will also post articles that counter other articles in order to demonstrate the range of opinion in the research community or to demonstrate the extent of what folks don't know they don't know.

    So I disagree with your criticism as it relates to me in particular.
    Last edited by Pooka1; 03-25-2011 at 05:16 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."

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    Quote Originally Posted by hdugger View Post
    That's some pretty old stuff.
    Please feel free to post a more recent one. This stuff does not differ all that much from Cheng's 2009 talk b the way.

    Please list research avenues that are being pursued now that were not mentioned in that 2000 review.
    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."

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    Oh my goodness! I didn't read the entire paper, but the processes involved are at about EVERY level. It's like a multi-system meltdown. I can certainly understand why it is difficult to get to the actual CAUSE when so many chemical responses are involved. It's like the old saying, "Which came first the chicken or the egg?" It could be at any one of those levels and involves the entire body. These are definitely difficult things to figure out. That was one of the hardest, yet most rewarding things we had to do in endocrinology. There are a lot of "red herrings" that can lead one in the wrong direction. It may seem like something is the cause when in actuality it is an effect. Mind boggling.

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    Quote Originally Posted by rohrer01 View Post
    Oh my goodness! I didn't read the entire paper, but the processes involved are at about EVERY level. It's like a multi-system meltdown. I can certainly understand why it is difficult to get to the actual CAUSE when so many chemical responses are involved. It's like the old saying, "Which came first the chicken or the egg?" It could be at any one of those levels and involves the entire body. These are definitely difficult things to figure out. That was one of the hardest, yet most rewarding things we had to do in endocrinology. There are a lot of "red herrings" that can lead one in the wrong direction. It may seem like something is the cause when in actuality it is an effect. Mind boggling.
    I associate myself with these remarks. Hope you don't mind!

    This is some seriously complex stuff. It seems like they are just trying to characterize the pathology which is hard enough. They don't appear to be even trying to address which genetic triggers cause it until they get their arms around the pathology.
    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."

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    Quote Originally Posted by Pooka1 View Post
    This is not my field and I have no pet hypotheses. That contrasts with the great run of other players in this sandbox who, comically, have an opinion without being in this field.

    Quote Originally Posted by hdugger View Post
    "Medical scientists are confronted with a number of obstacles including differences in the clinical definition of affected individuals, modification of the expression of the AIS genotype by environmental factors, variability in the age of onset of the disease and most importantly the lack of knowledge of the basic defect(s) in AIS leading to scoliosis."

    Quote Originally Posted by Pooka1 View Post
    They don't appear to be even trying to address which genetic triggers cause it until they get their arms around the pathology.
    Absolutely comical.
    Last edited by Ballet Mom; 03-25-2011 at 06:37 PM.

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    Quote Originally Posted by hdugger View Post
    I feel sometimes like I'm stepping into the spin zone down here in the research section. It's like watching politicians argue about the economy - each person culls through the research to locate the articles which support their own inflexible conclusions. I can turn off all of the actual posts and just see who's posting, and I can tell you pretty much precisely what they're saying. I turned off cable news for the same reason - there's just nothing new under the sun if all of the conclusions are preordained by belief.

    The only actual researcher in the field - skevimc - writes non-predictable posts. IMO, that's the hallmark of a real scientist - opinions which are influenced by the research, rather then research which is pressed to serve opinions.
    The preview function is your friend. If that doesn't work, I suppose you could block all of us inflexible thinkers and only read skevimc's posts.

    I also turned off cable years ago.

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    Quote Originally Posted by hdugger View Post
    But, after spending a good year trying to intervene in the battling between you and Pooka, I have largely tuned it out by blocking both of you. The quarreling is just giving me a headache and the information being uncovered in service of the fight is skewed and unreliable.

    I don't mean this as a overarching indictment of either of you - I've enjoyed many of your posts. But, for whatever reason, neither of you seem interested and/or capable of disengaging in battle despite just about everyone on the board asking both of you to do so. So, it's just easier for me to block the whole thing.
    Sorry you feel that way. Unfortunately, I feel very strongly that patients and their parents need to know that bracing is available and often successful and that surgery is not the answer to everything. And instead, the answer from the same person has always been the same....surgery, surgery, surgery and bracing doesn't work and don't bother to try and facts that don't support the immediate progression to surgery are ignored and quashed.

    If Pooka wasn't here trying to promote, for whatever reason, this rush to surgery....I wouldn't even be on this forum. It appears that scoliosis makes for a group of really cranky, angry individuals. It's not pleasant for me either. And unfortunately, we don't have a moderator who even tries to control the visciousness of the conversation, she obviously agrees with the flat-earth, religion bashing dialog. It's suprising that NSF hasn't tried to rectify that.

    So toodles then.

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    Quote Originally Posted by hdugger View Post
    What if you're wrong? And I'd ask that of both of you - what if your pet theory is incorrect? What if, through emotional persuasion, you convince someone to search out a doctor who supports bracing and it turns out that they braced all through their teen years needlessly. Likewise, for Pooka, what if you're wrong and you emotionally persuade someone into discontinuing bracing and they end up needlessly getting surgery which they could have avoided?

    It's not that these things can't be discussed intelligently, but that's not what's going on here. What's going on is that both of you are resorting to emotional arguments to force the argument your way and searching out the research which bolsters that viewpoint. The intent is to persuade, not to examine.

    And, I ask again, what right do either of you have to persuade patients? What right do you have to spin the research in your particular direction, and to feverishly try to discredit the research which doesn't support your position. You both do that - without question. I know that if either of you dissects research, it's going to be the research which doesn't support your viewpoint. And if either of you upholds research without question, it's going to be the research which does support your viewpoint.

    It's not elucidating. It's not illuminating. It's just a spin zone, where there are no facts, there's just positions. I really wish both of you would stop exposing parents to your quirky worldview and respect *their* choices enough to let them have an emotionally unencumbered discussion with their doctors to figure out what they should do. Neither of you have any right inserting yourselves into that discussion.
    I thought you blocked me. Please do so.

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    I deny doing anything but trying to show what the researchers IN THIS FIELD say.

    I have no personal opinion, no spin, no whatever because this is not my field and it would be comical if I had an opinion in something outside my field.

    Saying the jury is out on bracing either is or isn't the fact on the ground NOW.

    You and others apparently perceive the simple act of telling folks that the jury is out as taking a position. I disagree. It is relaying the state of affairs.

    Also there is some considerable ongoing confusion between the claims that some surgeon think bracing might work and ALL surgeons admitting there is no good evidence bracing works. I can't seem to word this in any way to get it across.

    My position is the only rational one possible... that is, everyone is dealing with the same literature and the ONLY intellectually honest position is that there is no good evidence bracing works and there is some evidence that it is done needlessly in most cases.

    All of that (dealing with the same literature, the consensus of the community on the state of evidence, etc. etc.) either is or isn't the case. I suggest those who claim it isn't the case need to sit at the young earth or flat earth table.
    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."

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    Let me add this.

    My daughter three years ago was told she was most likely to proceed to surgery. Her surgeon told me she would have been wasting her time if she has been braced any earlier anyway and it was lucky that she didn't have to spend all that time being braced.

    As I watched her ballet performance that spring, I sadly figured that was the last time I would be watching her perform as a fused spine would make the pursuit of ballet pointless, other than on a recreational basis, if that was even possible.

    Three years of bracing later, I just watched my daughter perform her first ballet solo. It was absolutely stunning. She looked completely professional, and no sign of unbalanced shoulders, which she had when she was first diagnosed. No one could have told she had scoliosis. Her dancing brought great delight to the audience and myself...and to her.

    Why did bracing help her and no one else? Do you really believe that? I don't believe that. Until these researchers and surgeons actually figure out whether there are different types of scoliosis, including exercise induced scoliosis, and they are able to determine who or why different people benefit, I would suggest it should be left to the parents and patient to make the decision whether the effort to make bracing work was worthwhile to them.

    For you to exclaim that I am somehow stepping into the decision of others is offensive. I have said all along that the decision to brace or not is the patient and family's decision.
    Last edited by Ballet Mom; 03-27-2011 at 11:49 AM.

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    The role of anecdote in science-based medicine...

    http://www.sciencebasedmedicine.org/?p=33

    While attending a lecture by a naturopath at my institution I had the opportunity to ask the following question: given the extreme scientific implausibility of homeopathy, and the overall negative clinical evidence, why do you continue to prescribe homeopathic remedies? The answer, as much as my question, exposed a core difference between scientific and sectarian health care providers. She said, “Because I have seen it work in my practice.”
    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."

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    From the same citation above...

    Understanding the world through stories was a good strategy in the environment of our evolutionary history but is far too flawed to deal with the complex world we live in today.
    This could be used as the sole reason to close the research section except to researchers in this field.
    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."

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    Quote Originally Posted by Pooka1 View Post
    The role of anecdote in science-based medicine...

    http://www.sciencebasedmedicine.org/?p=33
    For you to include a quote about homeopathy as a response to my daughter's medically-based treatment shows everyone your mindset.

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    Your relaying the situation is the anecdote, not any medicine involved.

    Read the article to see why.
    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."

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