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Thread: Stop trying to convince that official western medical community is the only option..

  1. #226
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    ‘people believing some of those treatments may help them to avoid a surgery are idiots, ignorant or desperates’
    They are not idiots. If the evidence case for over-treatment and failure is explained to them, virtually everyone would understand it.

    I do think many of them are ignorant and desperate.

    I have said at least a few times in this thread that I do not think people who try conservative treatments (bracing and PT) are crazy. But it is only ethical if they know what the evidence is going in. I have gotten the feeling that some parents seem to be operating under the assumption that there is good evidence for bracing. They are reasoning from bracing being the standard of care and that a surgeon is prescribing it. But this is very uncanny and unusual because bracing is clearly experimental. So they are not lying to their children but they are mistaken and the child does not get an accurate picture and so can't make an informed decision about whether to wear the brace or not. That's why I wondered how they will ever get compliance in BrAIST when the braced kids know the surgeons are okay with randomizing half of them to a no brace group based on their clinical experience and reading the literature.

    Alternative treatments (modified hand-held jigsaws, vibrating chairs, rain drops, little massagers with little feet that go up-and-down, up-and-down, chanting, etc.) are generally dreamed up by lay people and so are not worth discussing as a general rule.
    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. #227
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    Quote Originally Posted by flerc View Post
    Just only the absence of any reply, is ethic for you?
    This whole thread was dedicated to picking on one person, Sharon. Is the absence of a reply ethical to you? You say you defined OWMC, but you never did. You never said what "alternative" means outside the "OWMC". For those of us that do understand logic, your vague answers and abrupt change of topic or dismissing a person when you don't feel like giving a logical answer aren't enough. Like I said in the beginning, there is a NONSURGICAL section on this forum where people may discuss any treatment options that they wish. I've been here on the forum long enough to see how different personalities run and how people think. You, Flerc, are showing a not so nice side of yourself by your personal digs and put downs. In fact, the title of this thread is aggressive and accusatory. Sharon's only request when she's not convinced about a treatment is that who ever promotes a treatment should back that up with evidence. I don't see her arguing about people's personal experiences when something seems to work for them. You haven't offered any personal experience about ANY treatment. She is one of the few that especially try to keep the Research section clean. I don't think she should be slammed for that. So unless you have a personal experience of some "alternative" (whatever that is) treatment working, then you don't have the right to complain about being asked for evidence that it works. Everything that you have talked about is hypothetical. There are some things that can not be proven. But for the tangible things like treatment protocols, they can be proven. You can theorize until the cows come home, but it doesn't do a hoot of good unless you can prove that it works. I think this thread should be closed. It's full of nonsense and redundant rehashing of old topics.

    Sorry, that's just how I feel.
    Be happy!
    We don't know what tomorrow brings,
    but we are alive today!

  3. #228
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    Quote Originally Posted by Pooka1 View Post
    They are not idiots. If the evidence case for over-treatment and failure is explained to them, virtually everyone would understand it.
    No idiots? Not something meaning the same? Good!.. I may accept it by now.

    Quote Originally Posted by Pooka1 View Post
    I do think many of them are ignorant and desperate.
    I have said at least a few times in this thread that I do not think people who try conservative treatments (bracing and PT) are crazy.
    Is really very far from what you said in those posts about all of them.. you were asserting it in absolutely categoric way.
    Do you have a minimal idea about the effect that may (sure) provokes it in someone having hope in those to treatments to read what you said so many times here, the greatest scoliosis forum of the world? In someone 'new in scoliosis' is really very probable the lost of that hope, mainly because your argument is devasting 'There is no evidence any conservative treatment has prevented any surgery'.
    Saying it in the way you say it, in the name of science and so on, is sure at least very difficult those new people in this, (mainly for those without a backroun in science) to want to know about same evidence, try to find it, to know what must to be know about scoliosis in order to improve it, what exactly those methods does.. They really may feel despertes ignorants doing it. And is not good to cut the hope to anyone.
    Is not right, at least you really know there is not such hope, you have the absolut and definitive evidence about it. And of course in that case you should to show to them.
    Is not right to do it, no matter what your fans here may says.
    But you are going (since long time ago) for more! You also want to ELIMINATE THE POSSIBILIYT OF AVOIDING SURGERY using braces to.. how many people around the world?
    You are decided to erase it from the face of the earth before something definitely better will be available for all these people. I’m saying they may be improved (and I justify what I say) in order to increase the effectiveness. But you don’t want to deabte about it. You know it would not be convincing for noone to be defeated.. certainly I don’t understand your fans.. or yes I do?

  4. #229
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    Okay I think I see the problem.

    You seem to think that saying...

    1.) "There is no good evidence that bracing has saved a single person from fusion."

    is the same as saying...

    2.) "There is good evidence bracing can never work."

    Those statements are entirely different. Only the first is true (as proven just by the existence of the BrAIST study irrespective of any results they may glean when they publish their findings). The second is false and will likely always be false. I actually think there may well may be a (very) small, undefinable group of AIS people who might avoid fusion for life from bracing (or PT). But if researchers can never show that then it is rational to remain skeptical and kids should be informed so that can decide if they want to take a chance or not. It is not crazy for a child to decide to try bracing (or PT) if they are informed.

    It is NOT rational to try alternative treatments dreamed up by lay people such as you have talked about for years in my opinion.

    Does that help?
    Last edited by Pooka1; 03-11-2013 at 10:39 AM. Reason: clarity
    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. #230
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    Do you know if results from the BrAIST study have been posted or when thy are expected to? I am curious what the results of the study were.

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    Quote Originally Posted by tkare View Post
    Do you know if results from the BrAIST study have been posted or when thy are expected to? I am curious what the results of the study were.
    Oh sorry that was worded poorly.

    I meant the very existence of the BrAIST study proves that the jury is out and that there is no good evidence bracing works to avoid fusion NOW. The study hopefully with shed light on whether or not bracing is effective at avoiding fusion at least until the point of skeletal maturity and in which patients. The lesson NOW from BrAIST is that the study was deemed ethical and it involves randomizing kids to a no-brace control group. And that surgeons at 26 medical institutions agree it is ethical to have half the kids not braced. That is a statement about the state of evidence for bracing as it exists NOW.

    I think the study is still on-going but is close to wrapping up as far as I know. I don't know if they are still recruiting patients. You can email Lori Dolan at U of Iowa for further details.
    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. #232
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    That's right. Some patients had certain pre-formed notions based on I don't know what about which group they wanted to be in. The study accommodated them.

    I think it is now considered partially randomized or something like that. There was a Dolan publication I think about how the non-random groups did not differ significantly from one another so that may mean they can crunch the data as if it was random. Not sure. If there was a difference in the groups due to patient self-selection then that would limit the impact of the study greatly in my opinion. I think that should be studied about how lay people need more training on how research is done and the limits of research.

    But none of that changes the bottom line that surgeons at 26 institutions agree it is ethical to randomize kids to a no-brace control group. These surgeons have hundreds and hundreds and maybe over 1,000 collective clinical years in on top of a knowledge of the bracing literature. And they think non-bracing in this study is ethical. That's the main result at this point.
    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. #233
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    Quote Originally Posted by Pooka1 View Post
    Okay I think I see the problem.

    You seem to think that saying...

    1.) "There is no good evidence that bracing has saved a single person from fusion."

    is the same as saying...

    2.) "There is good evidence bracing can never work."

    Those statements are entirely different. Only the first is true (as proven just by the existence of the BrAIST study irrespective of any results they may glean when they publish their findings). The second is false and will likely always be false. I actually think there may well may be a (very) small, undefinable group of AIS people who might avoid fusion for life from bracing (or PT). But if researchers can never show that then it is rational to remain skeptical and kids should be informed so that can decide if they want to take a chance or not. It is not crazy for a child to decide to try bracing (or PT) if they are informed.

    It is NOT rational to try alternative treatments dreamed up by lay people such as you have talked about for years in my opinion.

    Does that help?
    Does help to what?
    If you are asking if this empty ‘reply’ about what I said you, may help me to realize you never will recognize nothing and will never stop doing what you do here , in fact it was not necessary.. certainly I not opened this thread believing it could happen some day.
    But as I said, my interest to continue in this thread is to talk about braces.. how may be improved.

    Hdugger, nice to see you here again!
    Last edited by flerc; 03-11-2013 at 02:17 PM.

  9. #234
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    Quote Originally Posted by hdugger View Post
    I'm becoming more and more convinced that it's all in the protocol. As you suggest, protocol should include shooting bear in head and not shooting yourself in the head

    Oddly, I am theoretically opposed to bracing. It just seems to me like weakening the muscles *can't* help. But, my theoretical disposition aside, it seems like it does work if the protocol is followed.
    If I expected someone here may understand what I was saying (certainly since years ago) was you! And I was not wrong. I’m busy now but I want to continue talking about it..

  10. #235
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    Fer,

    Please explain how these EXACT QUOTES from the article posted by your buddy differ from what I have been saying... are you going to get mad at them also? Really?

    emphasis added

    The effectiveness of bracing, however, has not been sufficiently established due to a lack of randomized controlled trials (RCT) [15, 24].
    All Medical Ethics Committees approved the randomization process. Furthermore, the Medical Ethics Committees approved that the control group would not be offered brace treatment, [...]
    This brace is a regular treatment, and is preferred amongst most of the orthopaedic surgeons, and apparently also by patients and parents, even though evidence is not convincingly established.
    In our recently published case–control study on the effectiveness of screening for scoliosis, we did not find evidence that screening leads to a reduction in the need for surgery, which is the ultimate goal of screening [4]. One of the reasons why we did not find a beneficial effect of screening could be that brace treatment is not effective (enough) in (some of) these earlier detected patients. These results justified a RCT on bracing even more.
    Here's some speculation as to why lay people have an inaccurate view of the evidence for bracing...

    Internet is an important information source for people who want to learn more about their disease or condition. Supposing eligible patients would consult the Internet, before they visit an orthopaedic surgeon, they would now mostly find that bracing is a (effective) strategy to prevent them from worsening. Perhaps, an Internet site with balanced information on the trial could have resulted in a higher participation rate, although the value of audio-visual interventions for people considering participating in clinical trials is unclear [21].
    This has probably much to do with the fact that bracing is the regular treatment and once patients have progressive curvatures, they want to act and try their best to stop progression, even if evidence of effectiveness is not convincing.
    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. #236
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    Quote Originally Posted by hdugger View Post
    Science is good at gathering data. What it doesn't always do so well is make sense of it. If you ask a stupid question, or if you don't really think about what the results of your study might mean, all the data in the world won't make you any smarter. Your data could be spot on and your analysis could still be 100% wrong, and you'll be running at 80 MPH in the wrong direction. OTOH, you can make good sense of what you see in front of you without any formal scientific tools whatsoever.

    I've read alot of studies and still the single most convincing piece of information I've picked up in my years of thinking about scoliosis is the "series" of patients over at the scoliosis support forum who all went into surgery with some degree of kyphosis (like my son) and all came out with neck problems. I don't need a paper to tell me there's something going on there - I can see if for myself. OTOH, I've read several papers that were worse then useless - stupid questions, stupid design, stupid analysis.

    Science is intelligent careful observation - nothing more, nothing less. I'd take Linda's word on what she'd seen actually working with patients day in and day out over 99% of the studies I've seen.
    Hdugger, you really understand what really science is and what is not. Without a carefull observation, what kind of analysis may be done in order to arrive to the right conclusions? And of course right conclusions is what we need in order to solve problems.
    Common sense and logic never should to be abandoned!
    As you say, you not need a paper to tell you what is obvious!

    And talking about braces, what may be more obvious than the necessary conditions for using it? I cannot understand how not may obvious for everyone. I talked so much about it when I was evaluating the EDF gypsum brace.. triggering many complaints here. Did you read what is said here
    http://europepmc.org/articles/PMC308...Sf7fxWA0MwTD.0

    The majority of studies on bracing acknowledge that compliance with brace wear is a major problem. A study on part-time bracing for AIS reported that although the average correction with part-time brace wear was less than that with full-time, compliance was better compared with studies involving full-time bracing (5). Perhaps the improved results of derotational casting compared with bracing, is because the cast cannot be removed so the corrective forces are applied 24 hours per day. If a brace was socially and cosmetically accepted so the patient would were it 24 hours per day, bracing may be a solution for the nonfusion treatment of AIS.

  12. #237
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    Quote Originally Posted by Pooka1 View Post
    Fer,

    Please explain how these EXACT QUOTES from the article posted by your buddy differ from what I have been saying... are you going to get mad at them also? Really?

    emphasis added


    Here's some speculation as to why lay people have an inaccurate view of the evidence for bracing...
    Sharon what happens? Why so angry? And you say I'm getting mad? The last time you said me that, seems to not have a good outcome, no???
    I'm not sure what are you trying to say.. Is because something about my
    buddy? Are you jelous? Haa!!
    Anyway try to understand what she said about science.. never is late..

  13. #238
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    Quote Originally Posted by flerc View Post
    buddy? Are you jealous? Haa!!
    No I don't want to horn in on your buddy's and your "unique" approach to what science is. You two are two peas in a pod!
    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. #239
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    If there are not many other peas here is for your great work! Continue with it..sure you are proud.
    And certainly ask her for a definition about ethics, she is very clear.. maybe someday you think in this

    Quote Originally Posted by flerc View Post
    No idiots? Not something meaning the same? Good!.. I may accept it by now.

    Originally Posted by Pooka1
    I do think many of them are ignorant and desperate.
    I have said at least a few times in this thread that I do not think people who try conservative treatments (bracing and PT) are crazy.

    Is really very far from what you said in those posts about all of them.. you were asserting it in absolutely categoric way.
    Do you have a minimal idea about the effect that may (sure) provokes it in someone having hope in those to treatments to read what you said so many times here, the greatest scoliosis forum of the world? In someone 'new in scoliosis' is really very probable the lost of that hope, mainly because your argument is devasting 'There is no evidence any conservative treatment has prevented any surgery'.
    Saying it in the way you say it, in the name of science and so on, is sure at least very difficult those new people in this, (mainly for those without a backroun in science) to want to know about same evidence, try to find it, to know what must to be know about scoliosis in order to improve it, what exactly those methods does.. They really may feel despertes ignorants doing it. And is not good to cut the hope to anyone.
    Is not right, at least you really know there is not such hope, you have the absolut and definitive evidence about it. And of course in that case you should to show to them.
    Is not right to do it, no matter what your fans here may says.
    But you are going (since long time ago) for more! You also want to ELIMINATE THE POSSIBILIYT OF AVOIDING SURGERY using braces to.. how many people around the world?
    You are decided to erase it from the face of the earth before something definitely better will be available for all these people. I’m saying they may be improved (and I justify what I say) in order to increase the effectiveness. But you don’t want to deabte about it. You know it would not be convincing for noone to be defeated.. certainly I don’t understand your fans.. or yes I do?
    And do what you should.

  15. #240
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    Fer,

    I have no idea what you are talking about. I have tried my best to answer your questions. i don't know what else to say.
    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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