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flerc
03-14-2013, 01:02 PM
I know now more about why you think in this way and always seem me someone really wise.
Certainly it ever surprise me how so many people affronting health problems, even knowing the solution offered by the official medicine will be far to be satisfactory and odds to ‘works’ low in their case, anyway they refuse to prove with something else, even they not loose anything doing that prove. Certainly if you have 2 options A with 99% of chances to work and B with 1%, you may say that the most reasonable choice would be A. But probably the right choice would have been B. Sure if you was in the 1% of A failure cases and in the 1% of B successful cases, so B would have been the right decision, not A (the most reasonable by far). So if you have choose A, you did a wrong decision, but you may be sure you did a very reasonable decision (may we try any more?) But if you refused to prove also with B, not losing anything doing it, you would have made an unreasonable decision too, not only wrong.

If I understand what you say, kyphotic with dorsal curve are sever problem (the curves moves to other zones?) and adults have a bad posture loading more weight to the curve.. also to loosen (relax?) the muscles may improve the posture. Really interesting! Supposing I interpreted rightly, this ‘fact’ should to be gathered in the Knowledge Data Base.
Of course General Problem Solving is not ‘so easy’ as Maths, in the sense is difficult to be sure you are working with facts. You need a perfect proof, enough good evidence to be sure, but anyway you cannot sit down and wait to be absolutely sure before using that assumption. Certainly we deals with assumptions, not facts.. may be really facts but we are not so sure. I opened a thread years ago mentioning some (few up to this moment) ‘facts’ (more optimistic than saying assumptions) for me some of them as questions, others as assertions.. I was new and I supposed people would be interested in working in that way..

If someone said something seeming reasonable should to belong to KDB (Knowledge Data Base) assigning a percentage of validity saying how much convincing we believe is that assumption and recording the foundation saying why it seems to be true and the criticism saying why it seems to be false..
For instance I heard here about some ligament that turn so stiff in adulthood and make something as a natural fusion. Of course such assumption should belong to the KDB, recording in the foundation, same experiment done. But I know an ‘old’ woman with 80į having an extraordinary flexibility, so it should to be recorded in the criticism field. The % validity may decrease then from 85% to 45%.. other members may say something in favor or against it and would be updated again.. and of course the same would happens with the assumption (conclusions) derived for this assumption.

We would be updating every time the validity of the assumption in order to new data entering in the forum until a definitive proof may not be questioned. In the meantime you have many assumptions with a validity estimation saying about the chance of successful if you are decided to do something taking it into account!

Wow!.. although the assumption of Francis yesterday, it seems I’m not thinking so much in what Saint Francis said.

flerc
03-15-2013, 11:17 AM
None extra technology would be needed in this forum to have his own Knowledge Data Base( KDB). A very simple notation can perfectly describe data, the conclusions and the relationships forming the Solving Problem Network. When the network growth, is difficult to follow it, but I designed once a simple graph in order to make it clear, showing all the concepts involved in the solving process and graphs may be ‘stored’ in this forum.

Your good idea about gathering patient information of course might be part of this big KDB. Until a careful observation would be done, it would be only data.. After observation and analysis, a conclusion may be done and this data would be part of the foundation of this conclusion. For instance the observation of Patient53 who after some months of Rolfing practice, increased the difference of the ratio between the height being stand up and lying up would support the assumption telling that ‘flexibility may be improved in a significant way’ which in turn may be used to get other conclusions..
In the same thread of only ‘pure data’ may be gathered also experiments (without conclusions)
Certainly this is very close to Data Mining. the process of extracting relevant information from data. And relevant information (facts assumptions) is needed in order to solve problems. The typical example is the discovery telling that in Friday was an unusually high number of customers who purchased both diapers and beer. . analysis revealed the fact that there was many young fathers whose outlook for the weekend was to stay at home taking care of her son and watching TV with a beer in hand..a relevant information in order to solve the problem of not enough sales. The solution was placing beer next to diapers in supermarkets to promote sales compulsive.
High tech may also be used in Data Mining as Artificial Intelligence.. of course it would not be a necessary condition the use of AI to do a KDB here.

Imagine all the people around the world worry about the scoliosis problem, dedicated to the KDB construction.. smart people, intuitive people, wise people.. having good ideas, dooing good observations, sharing real experiences.. who may say would not be something great? Only an ignorant I believe.

flerc
03-16-2013, 08:30 PM
In the same thread of only ‘pure data’ may be gathered also experiments (without conclusions)

Also in the case of scientific experiments described in articles, conclusion should to be evaluated. As PAUL NURSE said ‘..respect for observation, respect for data, respect for experiment. Trust no-one. Trust only what the experiments and the data tell you. We have to continue to use that approach if we are to solve problems..'.
I think is right your conclusion about the ‘experiment’ with your boy. I’m sure cosmetic improves in that way. Massages I ‘feel’ are wonderful. I don’t know why, but we are not only a mind, we have instict, intuition.. ancient cultures knew and used since centuries ago some things that only recently was explained why they works.
You are doing remember me I saw an significant improvement in this sense when my daughter practiced Antigymnastique http://www.antigymnastique.com/us/what-is-antigymnastique and I’m thinking since movements are done over the floor, probably also works as a self massage.. maybe has nothing to do, but anyway I’m sure massages are an excelent complement.. as I believe it is electro estimulation-
Thanks Hudgger for share your email form SEAS with me. Certainly I doubt so much they come here.. maybe now because Fransisco assumption this week Ha!.. Schroth is not here.. also not Spinecor, (I don’t know why Argentina appears in the list of countries).. any way I may write to them.

flerc
05-17-2013, 08:09 PM
Flerc, I know you're just trying to provide context for your response, but what you're *actually* doing is posting all of Pooka's posts a second time, and also making them visible to those of us who have chosen to put her on ignore.

I suspect you don't believe that every one of Pooka's posts deserves to be posted twice. Would you mind finding some way of providing context which doesn't amplify her message. Anyone who can read the thread can read her post themselves, and the rest of us can be left in our blissful ignorance :)

I am grimly bemused, though, by the idea that those of us for whom there is no safe medical treatment should just "accept reality." I'm going to confer with Dante about which circle *that* belongs in!

Sorry Hdugger but can I do?
I may do the same as you, but certainly I would have not latin blood running in my veins if I would be quiet knowing someone is saying about me what she use to say in order to do her work and not reply to her teasings behind my back.
And certainly I believe is good to take into account what I said you once in this thread:



I’m sure that all the evil of the world is not only because the bad people provoking it, but mainly because the good people not doing anything to not allow it.
That ‘good’ people probably may be seen as good anyway, but at least they are accomplices.
And certainly I don’t want feel as an accomplice of the perversion I’m seeing here since long time ago.


Certainly if I would use that button as you do to not read what she says, I would be doing what she wants, she might make me look as a fool and that seems to be the main part of her work: to convince everyone reading this forum that only fools, ignorants, mads or desperate people may thing in something different to what the western official medical community says. Certainly it seems you agree with what she says when you not reply what she says about your posts.
So I also would be part of her work.. I would be an accomplice of her inmoral work and she has so many accomplices here..so I don't want to belong to that club!

flerc
05-22-2013, 11:30 AM
I used to run online forums as a job, so I've seen that solution frequently. And I agree that it's unavoidable in this case if you want to have two posts in a row about the same topic and not post-jab-post.

The reason I've resisted for so long is mainly what Flerc says. You're departing the stage for the wings. You're learning things which now only a very few people will know. And you're leaving behind only the steady drumbeat of "surgery surgery surgery" for any other parent coming to the biggest public forum in the US looking for advice about their child. Your child comes first - and I understand what you need to do for her - but there's a vacuum left behind.

The second reason is more quirky, I suspect, on my part. I think much better when I'm talking to people who don't agree/don't see things the way I do. So, for me, a bit of tension, a bit of back and forth, is actually really helpful. But, obviously, non-stop disruptions and personal invectives go way, way past "a bit of tension".

You know, I'd noticed that interesting, non-surgical posters had just sort of drifted off one by one and only come back to give updates - not to discuss any more. I didn't realize just how global it was until I saw one of the most interesting non-surgical posters come back for an infrequent update, and be immediately snagged by the other most interesting nonpsurgical poster and asked to join the other group. That's very, very smart to find really the best people all using different methods and all putting their heads together. And I completely understand why it can only happen in private. Can I ask a big favor? Can you throw up a website or a blog or something public and static and just post monthly reports there? Don't take comments - don't let it devolve into this. But just create a place where someone looking to see what other solutions there might be has a tiny window.

Every thing that may be done and posted out of this forum may be great for people doing it, but it would favors the people don’t wanting this Forum to be what it should to be. How many people might know about what those groups are doing? Did you see how many visits has some threads here?.

Why this forum should to be the biggest promotion of the world only for surgery? Why people thinking in other kind of solution must to be private to know about other possibilities? If this forum would be formally shown as a surgical forum and it would be banned to talk about something just only suggesting about other possibilities it would be ok. But it would not be a good promotion really and sure, other forum would be the biggest scoliosis forum in the world with a non surgical section.. and of course is logic to believe it would not be what they wants.

flerc
05-22-2013, 12:06 PM
yes! Ding! Ding! Ding!



I agree Dingo is intelligent. It's not a question of intelligence but one of specific knowledge. Big difference.

Supposing as your said he has a limited specific knowledge (donít you) which is the problem? Why he should to be aggressed?

flerc
05-22-2013, 12:59 PM
As always, you are correct. Here we are (intelligently, helpfully) completely trashing Dingo's thread. Sigh. How that man manages to get any work done here completely gobsmacks me. He must mediate himself into a pure light Zen state before every post :)

You are not forced to reply in his thread. You also may reply in the way as Iím doing. If all of us would do it, we would not favoring her work. OF COURSE ALL WE MUST TO FIGHT AGAINST HER IMMORAL WORK but in the right place, that is, in this thread!.

hdugger
05-22-2013, 02:50 PM
I am going to post a link to very sweet post from a parent new to the forum looking for help with her child, and then text of the post below:

http://www.scoliosis.org/forum/showthread.php?14311-How-do-I-find-the-right-surgeon-for-my-son-s-surgery&p=150471#post150471

"This is the first day I have not cried while discussing my son's scoliosis. It's because I feel the kindness and support from all of you-- you are giving me strength."

It's so sweet, it almost makes me want to cry. But it also makes me feel how completely different my experience and the experience of other parents looking at anything other than surgery, has been.

I know that we non-surgical folk seem argumentative. You only have to take a look at any of these topics to see that, geez, we just seem to want to fight all the time. Heavens, what unpleasant people. And the surgical folk, even those who might be arguing with us, seem, at the least, well-rounded. They might argue in a thread or two, but they have lots and lots of friendly interactions all over the forum. Here they are sharing their child's recovery experience, there they are recommending a surgeon. So, it just looks like the non-surgical folk are sort of provoking these people who are otherwise perfectly nice.

But, we argue because we have no place - not a thread, not even a few posts in a row - where we can talk, where we can share *our* experiences, without being argued with, at the least, or being told that we are idiots and monsters, at the most. We're not thin-skinned, we're not unpleasant, we're just trying to feel that sense of place that the rest of you feel. That sigh of relief to talk to someone who gets what we're going through, who can help, who can offer advice. We don't know people offline we can talk to - this is it. This is the one place we can come.

Is there not *one* discussion, not one unbroken series of five or six posts *anywhere* on this whole big forum where we can start to develop a sense of place amongst ourselves?

I assure you that, if the tables were turned, if the anti-conservative treatment crowd found that every time you turned to the person next to you and talked about your child's upcoming surgery I interrupted to repeat the risks, to tell you that you were uninformed just by choosing surgery, that you were lying to your child about their life time risks, that you were personally ill-fitted to even decide if surgery was right, or any of the other things any of us has been told or been called, you'd discover that the surgical folk can be pretty darn argumentative too.

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

hdugger
05-22-2013, 05:10 PM
(sotto voce, stage left) "The man's a hot head, and the woman seems a little over dramatic" :)

Victine
05-22-2013, 05:21 PM
As usual, well said hdugger,

I am glad for that mother and believe it should be handled in that mature manner for everyone, whether they are searching for surgical or non-surgical solutions here on this forum.

Unfortunately for me, my experience was anything but pleasant. When I started to come across posts from Dingo, Tamztom and others, I was relieved to read about what they were doing . . . . only to be crying a few posts later when Pooka1 would so mercilessly appear and play her self-serving games. This went on for a couple of years as I read the non-surgical threads. I soon learned to put on blinders when I would come across posts from Pooka1. I'd avert my eyes and skip right over. Now, one of the advantages of being a new member is that I am able to use the "ignore" button.

This blog has been created to HELP people who are dealing with scoliosis regardless of whether they choose to try bracing, surgery, Schroth or other physical therapy "exercises". I am sure it is NOT meant for people to recklessly parade around like it is their personal playground.

hdugger
05-22-2013, 07:45 PM
Responding here to post over in Dingo's thread

Tamztom's thread has a different drumbeat, meant to make clear that he and his daughter are doing something that no one else would be able to do (i.e., the "unique patient" approach, used on Martha Hawes, et al):

I picked a couple of pages - here's a summary of a series of posts

* His daughter is extraordinary, unique, can do things that no other human being can do. (Read: this won't work for other kids)
* His daughter has JIS and not AIS. JIS patients are just able to do things that AIS kids can't (Read: this won't work for most kinds)
* And even - god help me, and even - what if someone got Dengue Fever and was too weak to go on exercising (Read: this won't work (I guess!!!) for most people because Dengue Fever is really surprisingly prevalent)
* And then a repeat of proven-wrong error about Martha Hawes exercise regime - claiming it is "more effort then most people can give". When this was first raised years ago, I think people claimed she was spending hours and hours every day, I actually wrote to her, and she told me she had spent more time at first but spent no more then an hour a day. I posted that correction, but the incorrect version just keeps creeping back into discussions.

and that's just two pages in that topic.

It's more subtle than in other topics. I suspect that if Tom's daughter had AIS, it would require a more full frontal approach. But, it's there.

Again *every* topic. Different approaches in different places. But *every* topic about non-surgical approaches, you'll always hear the same drumbeat.

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

hdugger
05-22-2013, 08:29 PM
I sort of picture it like a body fighting an infection. If the infection is more minor, like say a cold, then the body just tries to surround the invading cells and neutralize them. That's sort of how I see Tamztom's thread. All of his posts are just surrounded by this neutralizing material, so that the rest of the body (forum) doesn't get infected.

But, if the body gets invaded by something more serious, like, say, Dingo Fever (I hear it's going around) then it has to run a huge fever, surround the offending organism with pus, and then just expel the whole foul thing.

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

Pooka1
05-22-2013, 08:40 PM
On another note, here's a funny, funny series of posts. So, before Dingo made the mistake of straying into armchair biochemistry, he posted about exercise (Torso Rotation). I started at the beginning of the thread, when the body was still fighting it as if it might be a minor infection. In this case, the body has not yet tried to eject the whole Dingo, but just the one study that he's relying on. At first, it's just that there's not enough follow-up. Then the report is called "the worst I've ever seen published in terms of extravagantly going beyond the results and wildly speculating without much if any ground to stand on." Then, the authors are discredited "Physical therapists are not trained in research." Then, finally, it's time to call the editors "That paper is embarrassing. I am considering writing to the editors about it making the same points I made here. I'll report back if I do that and if I get a response. Exercise therapy might work but you wouldn't be able to determine that from that study design." What is this report? What uneducated PT is writing this embarrassing report that must now warrant a call to the editors. Why, it's our own Kevin McIntire! Stupid armchair researcher!

Sorry, that's just so, so funny.

That's true. That was before I realized how hard it is to research in this area. I told him that. I later posted a meta-analysis that singled out Dr. McIntire's study as the only unbiased one. So that paper is actually a top paper in that field. It's just that field is very, very different than other fields which are easier to do controlled studies. I apologize for not being born knowing this like some people.

And by the way, Hawes needs to retract her paper stating she did thing for many hours a day for several years if that is incorrect. Here is a site to do that..

http://retractionwatch.wordpress.com/

Pooka1
05-22-2013, 09:02 PM
Yeah all that criticism is wrong. Those torso rotation studies are easy to do. Torso rotation is valid and works. No need for fusion surgery.

Pooka1
05-22-2013, 09:14 PM
This may (or may not!) explain what is going on.... wiki!

http://en.wikipedia.org/wiki/Scientific_skepticism


Scientific skepticism ( also spelled scepticism) is the practice of questioning whether claims are supported by empirical research and have reproducibility, as part of a methodological norm pursuing "the extension of certified knowledge".[1] For example, Robert K. Merton asserts that all ideas must be tested and are subject to rigorous, structured community scrutiny (see Mertonian norms).[2]


Scientific skeptics attempt to evaluate claims based on verifiability and falsifiability and discourage accepting claims on faith or anecdotal evidence.

hdugger
05-22-2013, 09:16 PM
So, series of posts just to say that it won't look the same every time. Sometimes it's subtle and helpful-seeming, and sometimes it's all-out war. But, it's always there. For those of us infecting the forum with non-surgical ideas, it's always, always there. And, at last, I've found a good use for all the infection research :) And, I've proved the point that us non-surgical folk are just always complaining about something.

Oh, look, I'm surrounded by neutralizing posts. Is it getting hot in here?

Pooka1
05-22-2013, 09:34 PM
Some Richard Feynman quotes that are relevant here...


The scientist has a lot of experience with ignorance and doubt and uncertainty, and this experience is of very great importance, I think.


If we take everything into account, not only what the ancients knew, but all of what we know today that they didn't know, then I think that we must frankly admit that we do not know.


The first principle is that you must not fool yourself, and you are the easiest person to fool.

The last quote is what I try to keep in the front of my brain at all times in my life.

hdugger
05-22-2013, 10:09 PM
OK, I'm done for a bit, Flerc. Time to go back and actually get through the research a little bit.

Pooka1
05-22-2013, 10:11 PM
Oh, look, I'm surrounded by neutralizing posts. Is it getting hot in here?

I thought you stated on at least 5 bazillion posts that you have me blocked. How would you know what I'm posting?

mashkine
05-23-2013, 02:18 AM
Responding here to post over in Dingo's thread

Tamztom's thread has a different drumbeat, meant to make clear that he and his daughter are doing something that no one else would be able to do (i.e., the "unique patient" approach, used on Martha Hawes, et al):

I picked a couple of pages - here's a summary of a series of posts

* His daughter is extraordinary, unique, can do things that no other human being can do. (Read: this won't work for other kids)
* His daughter has JIS and not AIS. JIS patients are just able to do things that AIS kids can't (Read: this won't work for most kinds)
* And even - god help me, and even - what if someone got Dengue Fever and was too weak to go on exercising (Read: this won't work (I guess!!!) for most people because Dengue Fever is really surprisingly prevalent)
* And then a repeat of proven-wrong error about Martha Hawes exercise regime - claiming it is "more effort then most people can give". When this was first raised years ago, I think people claimed she was spending hours and hours every day, I actually wrote to her, and she told me she had spent more time at first but spent no more then an hour a day. I posted that correction, but the incorrect version just keeps creeping back into discussions.

and that's just two pages in that topic.

It's more subtle than in other topics. I suspect that if Tom's daughter had AIS, it would require a more full frontal approach. But, it's there.

Again *every* topic. Different approaches in different places. But *every* topic about non-surgical approaches, you'll always hear the same drumbeat.

I suspect Tamztom would strongly object to the argument that what he is doing cannot be replicated (in adults and/or kids), as well as the argument that AIS would be more difficult to correct than JIS. At least one adult on this forum, foofer, has reported great results after several months of corrective work, and as far as I know she was one week away from surgery. I hope she will write more about her experience on this forum despite its often hostile atmosphere.

rohrer01
05-23-2013, 10:22 AM
Hdugger,
Why are you trying to divide the forum into "surgical" and "non-surgical" camps? There's room for all kinds of therapies. As far as I can tell, most people that have had surgery have tried at least some non-surgical approaches. So where do those of us that non-surgical approaches have failed fall within your categorization of forum members? Lest I remind you that for some of us, surgery is also not an option, as in my case and your son's case. I think categorizing people according to your own standards is just wrong. It makes everyone who ends up having surgery, despite valiant efforts at non-surgical approaches, feel like a failure and forces them into the "surgical camp". There are not two camps here and your suggestion that there are causes contention among forum members. Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

Pooka1
05-23-2013, 10:30 AM
Hey Rohrer, one of the newer members has a BS in Genetics.

Hearing that is like getting a new lease on life. You will have back up now hopefully. All I can really do is carry your pencil. :-)

mariaf
05-23-2013, 10:52 AM
Hdugger,
Why are you trying to divide the forum into "surgical" and "non-surgical" camps? There's room for all kinds of therapies. As far as I can tell, most people that have had surgery have tried at least some non-surgical approaches. So where do those of us that non-surgical approaches have failed fall within your categorization of forum members? Lest I remind you that for some of us, surgery is also not an option, as in my case and your son's case. I think categorizing people according to your own standards is just wrong. It makes everyone who ends up having surgery, despite valiant efforts at non-surgical approaches, feel like a failure and forces them into the "surgical camp". There are not two camps here and your suggestion that there are causes contention among forum members. Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

I agree completely that everyone would be better served if we aren't divided into camps (surgical and non-surgical). I'm not directing this at anyone, but rather asking everyone to listen to what rohrer is saying. I think part of the problem is that often - and perhaps this is human nature to a degree - people make assumptions about others that turn out to be incorrect. I suppose I would be placed in the "surgical" camp because my son had surgery. However, I don't consider myself "pro surgery". In fact, I don't think anyone is "for" or "against" surgery, but rather realize that sometimes it is the only option. As has often been said on this forum, nobody WANTS surgery.

I happen to have a long-standing friendship with the woman who runs the infantile/casting forum. She advocates serial infantile casting as a way to avoid surgery in young children. I think she is spot on with this approach. She will recommend trying anything to avoid surgery. However, in cases where casting is not effective, she has referred parents over to me when their kids hit a certain age if those parents have expressed in interest in fusionless surgery (VBS, tethering).
In turn, I have referred numerous parents over to her who have contacted me regarding scoliosis in a very young child. I do not view her as "anti" surgery and she does not view me as "pro" surgery. We both want to help these kids in any way we can. For some, surgery is the best option. For others, it's not.

Why can't we adopt that mentality here??

Pooka1
05-23-2013, 11:05 AM
I agree completely that everyone would be better served if we aren't divided into camps (surgical and non-surgical). I'm not directing this at anyone, but rather asking everyone to listen to what rohrer is saying. I think part of the problem is that often - and perhaps this is human nature to a degree - people make assumptions about others that turn out to be incorrect. I suppose I would be placed in the "surgical" camp because my son had surgery. However, I don't consider myself "pro surgery". In fact, I don't think anyone is "for" or "against" surgery, but rather realize that sometimes it is the only option. As has often been said on this forum, nobody WANTS surgery.

I happen to have a long-standing friendship with the woman who runs the infantile/casting forum. She advocates serial infantile casting as a way to avoid surgery in young children. I think she is spot on with this approach. She will recommend trying anything to avoid surgery. However, in cases where casting is not effective, she has referred parents over to me when their kids hit a certain age if those parents have expressed in interest in fusionless surgery (VBS, tethering).
In turn, I have referred numerous parents over to her who have contacted me regarding scoliosis in a very young child. I do not view her as "anti" surgery and she does not view me as "pro" surgery. We both want to help these kids in any way we can. For some, surgery is the best option. For others, it's not.

Why can't we adopt that mentality here??

Both this post and Rohrer's are spot on. Well put.

flerc
05-23-2013, 11:32 AM
Unless you just like to stir the pot. I'm really disappointed in these kinds of posts that you have been posting. I don't care that you have experience running other online forums. That just gives you more experience on how to push people's buttons and take things off track AND makes you more accountable for continuing contentious conversations. There is no immoral work being done on this forum. There is simply a worldwide base of different personalities and opinions. If you think one member is being a bully, then report the bullying and don't try to divide the whole forum into camps.

Good defense, Rohre01!! That is, good attack to people trying to have a place here. Certainly as your friend suggested in some sense once, you might replace her.
But certainly is early to be thinking in that. You are a perfect equipment! She does her immoral work and you (of course too) defend her for people trying to stop it.. also I believe you have to learn very much yet.. but Congratulations anyway! You are in the path without any doubt!.

flerc
05-23-2013, 11:44 AM
Of course when I say you Good attack, I’m referring only that you show you are learning to use her arms.. only that. And of course something as logic, respect.. are not needed, certainly exactly all the contrary.

Pooka1
05-23-2013, 11:50 AM
Of course when I say you Good attack, Iím referring only that you show you are learning to use her arms.. only that. And of course something as logic, respect.. are not needed, certainly exactly all the contrary.

Has your daughter tried any of the conservative treatments mentioned? What were the results?

flerc
05-23-2013, 12:07 PM
I have absolutely nothing to talk about my daughter with people bad intentioned as you show every time you are.
If you want to talk with me about any other issue, even issues I'm trying to understand as bone remodeling, respond first to the serious accusation I did about you.

hdugger
05-23-2013, 12:11 PM
It is not the messenger who creates the message. The camps exist, the contentions exist. I'd divide the camps roughly into those who think that calling other parents blind/blind/naked is funny and acceptable behavior, and those who don't. Those who think that calling other parents blind/blind/naked is *not* contentious, but that saying that you find being called blind/blind/naked insulting *is* contentious.

So, the camps are there. The ugly behavior predates my response by about two years.

I am largely, have been largely, silent on this issue. For years. I honestly thought it was the virtuous path. Put people on ignore and just try to focus on the task as hand. Flerc's call of complicity really woke me up. He's right and I was wrong.

I have written to the NSF, this weekend for the first time, to ask for help. I wrote when I realized that I was completely and totally out of tools to resolve a problem which I consider deathly serious. Whether or not it will change anything, I do not know. I am hopeful, but I do not know. But, I am prepared to leave the forum, must leave, if it stays the way it is. I really cannot be party to something which I think is genuinely harming people.

I would note that, those of us pursuing non-surgical methods have felt uncomfortable and attacked for years now. Openly attacked and sniped at. Everywhere across the forum. When I talk openly about it in two threads, when *you* feel uncomfortable and attacked, for less than a week, suddenly it's the end of the world and simply must be stopped.

I'll tell you what. You get the 20 or so folk medicine threads of the first page of the Research Forum removed. You get Pooka to stop posting unpleasant things to the one thread where Dingo posts. You take all of those discussions about what an idiot he is into private messaging and get it off the forum. You talk to the moderators about deleting threads about how bracing parents are lying to their children, how they're cavelier and uncaring. And then we'll have a talk about whether or not I can stop posting contentious things in these two threads.

[In response to huge misunderstanding, clarifying that this post was a specific response to Rohrer *NOT* to the forum in general]

flerc
05-23-2013, 12:12 PM
There is no immoral work being done on this forum.

You are now defending also her work in a direct way! Of course I cannot have any more any doubt.

hdugger
05-23-2013, 12:29 PM
Or, better still, ignore all of my posts and just look at the evidence.

Where are all of the non-surgical patients? *All* of the exercise, and most of the bracing parents have left the forum - many of them to join another, private group.

Either there's something oddly correlated about wanting to pursue something other then surgery and having discussions in private groups. Or something in this forum has made them all leave.

Who's creating the camps again? The ones who feel forced to leave? Or the anti-conservative treatment ones who remain?

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

Victine
05-23-2013, 12:49 PM
I would note that, those of us pursuing non-surgical methods have felt uncomfortable and attacked for years now. Openly attacked and sniped at. Everywhere across the forum. When I talk openly about it in two threads, when *you* feel uncomfortable and attacked, for less than a week, suddenly it's the end of the world and simply must be stopped.

I'll tell you what. You get the 20 or so folk medicine threads of the first page of the Research Forum removed. You get Pooka to stop posting unpleasant things to the one thread where Dingo posts. You take all of those discussions about what an idiot he is into private messaging and get it off the forum. You talk to the moderators about deleting threads about how bracing parents are lying to their children, how they're cavelier and uncaring. And then we'll have a talk about whether or not I can stop posting contentious things in these two threads.

Yes. Bravo! Spot on.

flerc
05-23-2013, 02:21 PM
Of course, the only division here is about people trying to solve a health problem (regardless the kind of solution they may think is the best) and people having other interests as they are showing to have.

hdugger
05-23-2013, 02:28 PM
One clarification. I think Flerc is directly engaging. I'm not. I have the "anti-conservative treatment" on ignore, so I only see what Flerc quotes.

I am not writing to you. I'm writing for a bracing parent who visits the forum only to discover that there's an entire thread, with the words "bracing parents" and "lying to their kids" in the title, where people are comfortably just talking away. I'd like that parent to know, clearly and precisely, that that does not represent some kind of consensus opinion. I'm writing to the bracing parent who is scared and looking for assurance and who searches on the word "brace" and the first four posts that come up are other parents talking about how unfeeling and cavalier it is to even consider bracing. I want them to know that is not what everyone thinks.

I'm writing for a parent who, like a post I saw the other day, asks about where they might talk to other people about torso rotation and is told, matter of factly, that there's just one or two people on the forum, and just 35 people in research studies anywhere, who are even doing that so, pretty much, don't hold your breath. Fortunately for that poster, we had Kevin McIntire right there to answer the call, but how often might one expect *that* to happen. And I want the parent who reads through an exercise thread and hears the steady beat of "only this kid" "4 hours of exercise a day" "might get dengue fever" to not get discouraged by the barrage of conjectures.

I don’t actually love being snippy and unpleasant (although I do sometimes amuse myself), but I just cannot think of anything else to do. I can’t just remain complicit. My normal response of just trying to be calm and ignoring has, I think, made the problem much, much worse. I was really horrified when I took the small group of people I'm ignoring off of ignore and just got a real look at what it must look like to someone stumbling across it for the first time. I should have stayed engaged and tried to counter it all along – I think I really made a bad mistake. I tried to repair it this weekend by just deleting every post I wrote during my “ignore” days so that I don’t seem to be virtually sitting in these discussions and nodding my head.

So, I’m leaving breadcrumbs. Either help will arrive and the forum will become a welcoming place for all parents, not just some. That would be the best outcome – and then I can erase these posts and go back to doing what I want to do. But, if help *doesn’t* arrive, then I’m leaving and leaving some breadcrumbs behind to let those parents know that they have the tools within themselves to figure out what's best for their child, to trust themselves, and not to feel pushed, badgered and bullied into doubting themselves. Parent, professional, and child. That is full extent of people who might conceivably have enough details to know what you should do. Anyone else who tells you they're certain you must do x, y, and z should be given a good wide berth. And if they start manipulating you - if they drop the "fact" facade and just tell you that you're a bad, bad person until you follow their medical advice, you just run as fast as you can.

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

flerc
05-23-2013, 03:32 PM
And if they start manipulating you - if they drop the "fact" facade and just tell you that you're a bad, bad person until you follow their medical advice, you just run as fast as you can.

Or just do something best: say to those persons what you think about people doing something so much immoral and tell to everyone what kind of forum is this. Probably more people would decide to do the same and if it happens, they could not continue doing their immoral work and this would be kind of forum it should to be.
I'm not sure if it could take any sense to have any hope in other kind of help.

hdugger
05-23-2013, 03:39 PM
There's a kind of poison that you just can't get out of a forum without having access to the moderate and delete buttons. Being the lone voice standing just indicates to anyone visiting that 99% of the people agree, and there's this one hot head who doesn't. That doesn't mean that that's the way it is, but when you come into a forum where ugly posts are left standing and nobody says boo, that's the way it feels. I'd love to tell you that it just takes spunk to turn it around, but it's simply not true. Moderate and delete are the only tools that work, once it gets like this.

Sorry, one more tool. You create something new that's the way you want it, and you get the moderate and delete buttons there. And then you just swing by every once in awhile, the way Tom's group is doing, find the best conservative treatment people and just pick them off.

[In response to huge misunderstanding, clarifying that this post refers only to stridently anti-non-surgical posters. *NOT* talking about the forum in general]

Susie*Bee
05-23-2013, 04:27 PM
Sometimes I wish posts had "like" buttons like facebook does. There are many posts about many different things that I have either agreed with or have enjoyed reading and would have liked to click on a "like" button...

My own thought is that EVERYONE should be respectful of others on the forum. If you disagree, it can be done in a nice way. Once you express your disagreement, you bury the horse-- you don't keep killing it over and over and over. It is alright to do a little bit of bantering, but not put-downs. The jury is still out about bracing. It is still out about Schroth and other alternative methods. I think all the excellent surgeons have you try other things (not those) before saying that surgery is the only game in town. They want you to try PT, waiting and watching, other things depending on your age.

I was one who slipped through the cracks for years and years as no one in the medical field seemed to notice my problem. And I guess I wasn't about to bring it up myself! I remember in high school a friend saying how cool my back was when I was in my 2 piece swim suit, since it went all curvy. None of my dresses zipped right. My family doctor, when I was 27 and pregnant, said, BTW, you do know you have scoliosis-- and left it at that. I had back aches all my life, but in my mid 50s thought my back "arthritis" was getting awfully bad. I had my first x-rays. So where would I be in this grouping of camps? I survived without surgery for years, but then had it when it got too bad to deal with. But I remember many years when I was young where I just couldn't move some times... We just are all in the same boat and need to help each other and listen to each other. We are not here to belittle one another for having a different mindset. That is how the world is. How boring it would be if everyone thought the same and did the same and no one tried anything different. There would be no knew inventions, no new explorations, no new creations. And if someone wants to have faith in something that differs from your own mindset, then let mention what yours may be and then let it rest. That is what I have to say on this issue.

TAMZTOM
05-23-2013, 04:31 PM
I suspect Tamztom would strongly object to the argument that what he is doing cannot be replicated (in adults and/or kids), as well as the argument that AIS would be more difficult to correct than JIS. At least one adult on this forum, foofer, has reported great results after several months of corrective work, and as far as I know she was one week away from surgery. I hope she will write more about her experience on this forum despite its often hostile atmosphere.

Absolutely. Everything I do with Tamzin can be and is being replicated by other adults and kids. The goal is to be self-corrective with every movement. "Virtuous cycle." Just takes some initial effort then the ball is rolling. Tamzin is not super-human. She has the same thing everyone else has in here, curves on her spine. She does things that I've learned from working with other ADULTS. This is what this forum should be doing, informing everyone to pool their resources, WHAT BLOODY WORKS, IMMEDIATELY, stops progression and allows people to get on that self-corrective path. It's actually EASY after the initial changes set it.

As Hdduger says above, Martha Hawes boiled her correction down to an hour an day. With us, I use the term "all day every day", this simply meaning one enables the corrections to be one's habitual movements.

Dealing with scoliosis is so shrouded in unnecessary myth, bollocks, drivel, assumption 'n stuff! Correcting doesn't require Einsteinian brainpower or Michael Johnson athleticism. It is hard work at first, but becomes just how you are.

I can say that I DO NOT HAVE TO WORK TAMZIN AT ALL ANY LONGER. I do, and always will do. But her movements, breathing, muscle firing, proprioception, etc. as such now that she can correct all day just being her. "Her" is a wee kid who plays, does ballet, has started running again.

At the outset, according to the experts in neurosurgery and spine surgery, she was bloody doomed. 3 operations required. What a bloody joke!

PARENTS AND ADULTS WILL CORRECT THEIR SCOLIOSIS WITHOUT "MEDICAL INTERVENTION", WHICH, IN THE FIELD OF SCOLIOSIS TREATMENT, MAKES IT BLOODY WORSE! AND I'M REFERRING HERE TO SURGICAL INTERVENTION AND NON-INVASIVE CLINICS.

TAKE CONTROL OF YER OWN BODY AND GIVE YER KIDS CONTROL OF THEIRS.

PS: IT'S BEEN A LONG DAY....NEEDED A WEE SOAPBOX FOR A BIT...OFF BACK TO MY CAVE NOW... :)

Pooka1
05-23-2013, 04:32 PM
Nice post, Susie*Bee. :-)


Sometimes I wish posts had "like" buttons like facebook does. There are many posts about many different things that I have either agreed with or have enjoyed reading and would have liked to click on a "like" button...

My own thought is that EVERYONE should be respectful of others on the forum. If you disagree, it can be done in a nice way. Once you express your disagreement, you bury the horse-- you don't keep killing it over and over and over. It is alright to do a little bit of bantering, but not put-downs. The jury is still out about bracing. It is still out about Schroth and other alternative methods. I think all the excellent surgeons have you try other things (not those) before saying that surgery is the only game in town. They want you to try PT, waiting and watching, other things depending on your age.

I was one who slipped through the cracks for years and years as no one in the medical field seemed to notice my problem. And I guess I wasn't about to bring it up myself! I remember in high school a friend saying how cool my back was when I was in my 2 piece swim suit, since it went all curvy. None of my dresses zipped right. My family doctor, when I was 27 and pregnant, said, BTW, you do know you have scoliosis-- and left it at that. I had back aches all my life, but in my mid 50s thought my back "arthritis" was getting awfully bad. I had my first x-rays. So where would I be in this grouping of camps? I survived without surgery for years, but then had it when it got too bad to deal with. But I remember many years when I was young where I just couldn't move some times... We just are all in the same boat and need to help each other and listen to each other. We are not here to belittle one another for having a different mindset. That is how the world is. How boring it would be if everyone thought the same and did the same and no one tried anything different. There would be no knew inventions, no new explorations, no new creations. And if someone wants to have faith in something that differs from your own mindset, then let mention what yours may be and then let it rest. That is what I have to say on this issue.

Pooka1
05-23-2013, 04:40 PM
PARENTS AND ADULTS WILL CORRECT THEIR SCOLIOSIS WITHOUT "MEDICAL INTERVENTION", WHICH, IN THE FIELD OF SCOLIOSIS TREATMENT, MAKES IT BLOODY WORSE! AND I'M REFERRING HERE TO SURGICAL INTERVENTION AND NON-INVASIVE CLINICS.

Tom please publish this in some way. If there is any way I can help you write this up, graph data, etc., please let me know.

Pooka1
05-23-2013, 04:43 PM
Tom please publish this in some way. If there is any way I can help you write this up, graph data, etc., please let me know.

I think SOSORT would publish it. It doesn't matter that you are not in that field if you have a compelling story and it is written cogently and concisely.

TAMZTOM
05-23-2013, 04:44 PM
I have written to the NSF, this weekend for the first time, to ask for help. ... But, I am prepared to leave the forum, must leave, if it stays the way it is. I really cannot be party to something which I think is genuinely harming people.

Since I first starting posting on this forum 2 yrs or so ago, I've been contacted by many silent readers. I was surprised at first by how HARMED many people are by the negative posters. Several of these people are now my friends, affording me further insight. Here's some of the harm caused by the hard-nosed eedjits: 1) kids who don't need spinal fusion are signed up because of the bias in here...that = kids maimed for life because of the irresponsible postings; 2) mothers in tears relaying to me just how devastated they were coming into this place, desperate mothers of wee kids already in emotional turmoil then bludgeoned by callous eedjitry; 3) adults having surgery and coming out worse than they went in. I've talked with intelligent people who were so deluded about the options, they were pessimistic about their chances of ever correcting. Some of these people are now fighting back, straightening their bloody backs, and getting mighty angry at the ignorant drivel that prevails in here.

All of you silent folk, start shouting!

hdugger
05-23-2013, 04:46 PM
Sometimes I wish posts had "like" buttons like facebook does. There are many posts about many different things that I have either agreed with or have enjoyed reading and would have liked to click on a "like" button...

sorry susie, I completely apologize for throwing around surgical/non-surgical as if everyone who had surgery believed the same things. No, I absolutely do not mean you or the majority of people on this forum who are just trying to figure out what you want to do. If I in any way made you think that just having surgery was a betrayal to those of us have haven't, then I'm a complete idiot and I don't care who knows it. Sorry, wrong apology (because I have a friend who write a blog about apologies). My words were stupid and ill-chosen, and I understand why it felt like an attack. It was completely not meant that way.

I'm using "surgical" to stand for "surgical and stridently anti-non-surgical" and I will try to use exactly that phrasing in the future. I think that applies to exactly one person on the forum (but one who has something like 5% of the total posts, so it sometimes feels like more). The talking-about-bracing-is-cavalier is maybe two more people. So, it's a tiny fraction. But, even with just a handful of people, it is omnipresent. So, the whole tone of the place is set by, like, .01% of the forum.

Again, I'm an idiot. I'll even put it in my signature so that everyone knows :) Everything else you say is correct. I'll put that in my signature too.

[Edit: Went back to previous posts to make clear that I was trying to address only the stridently anti-conservative treatment crowd. Want to state this here in case my edits make Susie*Bee seem like she's responding to nothing.]

hdugger
05-23-2013, 04:50 PM
OK, signature change done.

TAMZTOM
05-23-2013, 04:50 PM
Sorry, one more tool. You create something new that's the way you want it, and you get the moderate and delete buttons there. And then you just swing by every once in awhile, the way Tom's group is doing, find the best people and just pick them off.

Hddugger, check your email shortly. I found another one of the best people who I want to "pick off"...you.

TAMZTOM
05-23-2013, 04:53 PM
Tom please publish this in some way. If there is any way I can help you write this up, graph data, etc., please let me know.

It will be published. Simply can't stop it now. People are correcting! Kids and adults. I will accept help from ANYONE who can help and wants to help. I have no ego, no pettiness, no motive other than to do my wee bit to help kids avoid the awful future they currently have at the mercy of an uncaring medical system. World-bloody-wide too.

TAMZTOM
05-23-2013, 04:55 PM
Calling all idiots...

:)

hdugger
05-23-2013, 04:58 PM
I was surprised at first by how HARMED many people are by the negative posters.

THAT is it exactly. People come here for help and feel harmed and flee. I will never understand why that feels OK.

hdugger
05-23-2013, 04:59 PM
Hddugger, check your email shortly. I found another one of the best people who I want to "pick off"...you.

Wow, it's the NSF version of the rapture :)

hdugger
05-23-2013, 06:22 PM
OK, that whole "if you just don't use their name when you talk about them, it will be much better" just completely blew up on me. It really cannot be more polite to let Susie*Bee! (for chrisakes!) think that I'm insulting her just because it's not polite to call Sharon out by name. I am shifting back to specifically calling people out by name instead of, you know, just letting the whole forum think that I'm mad at them.

[I have added a clarification to preceding posts sort of cutting it both ways - specifying that they're directed towards stridently anti-non-surgical posters only, but not actually naming any names. Is *that* the polite method???]

Susie*Bee
05-23-2013, 09:03 PM
sorry susie, I completely apologize for throwing around surgical/non-surgical as if everyone who had surgery believed the same things. No, I absolutely do not mean you or the majority of people on this forum who are just trying to figure out what you want to do. If I in any way made you think that just having surgery was a betrayal to those of us have haven't, then I'm a complete idiot and I don't care who knows it. Sorry, wrong apology (because I have a friend who write a blog about apologies). My words were stupid and ill-chosen, and I understand why it felt like an attack. It was completely not meant that way.

I'm using "surgical" to stand for "surgical and stridently anti-non-surgical" and I will try to use exactly that phrasing in the future. I think that applies to exactly one person on the forum (but one who has something like 5% of the total posts, so it sometimes feels like more). The talking-about-bracing-is-cavalier is maybe two more people. So, it's a tiny fraction. But, even with just a handful of people, it is omnipresent. So, the whole tone of the place is set by, like, .01% of the forum.

Again, I'm an idiot. I'll even put it in my signature so that everyone knows :) Everything else you say is correct. I'll put that in my signature too.

[Edit: Went back to previous posts to make clear that I was trying to address only the stridently anti-conservative treatment crowd. Want to state this here in case my edits make Susie*Bee seem like she's responding to nothing.]

No apology needed-- I did not feel betrayed or attacked at all. I guess it's all in the tone and I didn't "read" any negative tone in your words. I'm sorry you felt like an idiot because I didn't see that in any way. I think you are reading too much into it. (Maybe...) And you definitely don't need to say anything in your signature, silly. You are too kind. Friends? I hope.

hdugger
05-23-2013, 09:39 PM
Thank you Susie. I'll keep the reminder signature for a day, just to keep myself in line :)

My son also likely straddles the fence. I am so hopeful for the role of exercise, in general, but I fear that because he has congenital scoliosis and is self-fused at the apex of his curve, that no amount of adjusting his muscles is going to unfuse that part of his spine and make it straight. Even the people at the ISICO clinic (a group of Italy that's really plowing forward on this stuff) were very guarded in their prognosis. Just not enough cases like his.

So, although we'd prefer conservative treatment, we prepare ourselves for eventually needing surgery. But, the risk that way is that he also has kyphosis, and almost all of the kyphosis cases I've seen operated on recently (with one exception in this forum) have had not so great outcomes. A few had problems so bad that it left them in the throes of a depression and regret.

So, what to do, what to do?

I just learn as much as I can, both ways, and hope that, when we must make a choice, it will lead to the brightest future for him.

rohrer01
05-23-2013, 10:19 PM
sorry susie, I completely apologize for throwing around surgical/non-surgical as if everyone who had surgery believed the same things. No, I absolutely do not mean you or the majority of people on this forum who are just trying to figure out what you want to do. If I in any way made you think that just having surgery was a betrayal to those of us have haven't, then I'm a complete idiot and I don't care who knows it. Sorry, wrong apology (because I have a friend who write a blog about apologies). My words were stupid and ill-chosen, and I understand why it felt like an attack. It was completely not meant that way.

I'm using "surgical" to stand for "surgical and stridently anti-non-surgical" and I will try to use exactly that phrasing in the future. I think that applies to exactly one person on the forum (but one who has something like 5% of the total posts, so it sometimes feels like more). The talking-about-bracing-is-cavalier is maybe two more people. So, it's a tiny fraction. But, even with just a handful of people, it is omnipresent. So, the whole tone of the place is set by, like, .01% of the forum.

Again, I'm an idiot. I'll even put it in my signature so that everyone knows :) Everything else you say is correct. I'll put that in my signature too.

[Edit: Went back to previous posts to make clear that I was trying to address only the stridently anti-conservative treatment crowd. Want to state this here in case my edits make Susie*Bee seem like she's responding to nothing.]

THIS is what I'm talking about. There are NOT two camps of people. You wouldn't have felt compelled to apologize to Susie*Bee if you hadn't categorized the whole forum that way. I'm not in a camp, either. Flerc thinks I'm doing something immoral. What is immoral about trying to find out about treatment options and current research on scoliosis? I'm being accused for what? Because one member is being singled out by a band of people mad at her? I've had my share of problems with this person AND WORKED IT OUT VIA PM like ADULTS should. If it can't be worked out and a person feels bullied, then go to the "teacher" and report it.


Note to Rohrer



OK, that whole "if you just don't use their name when you talk about them, it will be much better" just completely blew up on me. It really cannot be more polite to let Susie*Bee! (for chrisakes!) think that I'm insulting her just because it's not polite to call Sharon out by name. I am shifting back to specifically calling people out by name instead of, you know, just letting the whole forum think that I'm mad at them.

[I have added a clarification to preceding posts sort of cutting it both ways - specifying that they're directed towards stridently anti-non-surgical posters only, but not actually naming any names. Is *that* the polite method???]

I was talking about refuting ideas, NOT dividing the forum into "camps" so that people feel that they have to defend their views. I thought I was pretty clear on that one. Your "idea" that there were two camps on this forum is what blew up in your face, NOT namelessly refuting an idea about a perceived misunderstanding in research, treatments, etc.

hdugger
05-23-2013, 10:28 PM
At least one adult on this forum, foofer, has reported great results after several months of corrective work, and as far as I know she was one week away from surgery. I hope she will write more about her experience on this forum despite its often hostile atmosphere.

I miss foofer! I miss a bunch of the people who have felt that they had to go private, over the years. It really does feel, sometimes, like the left behind after the rapture. You're talking to all of these interesting people and then, poof!

Victine
05-23-2013, 10:49 PM
Foofer is very nice. Busy correcting her spine.

rohrer01
05-23-2013, 11:01 PM
There was a woman who was using the Spincor brace that disappeared as well. I was actually considering trying it just to see if it would reduce pain. I know she took a lot of hits from people. I don't know why. I have a thread where I document my own experience and treatments. Some of them have turned out negatively for me, but I didn't get dissed for trying.

flerc
05-23-2013, 11:08 PM
We just are all in the same boat and need to help each other and listen to each other.
No, it's absolutely false! I'm not in the same boat as those persons here doing what they are doing.. their reason to be here.. the really immoral work they are doing here since years ago. I'm in the some boat of people being here in order to cope a health problem in the best possible way, regardless the kind of solution selected(surgical, non-surgical..). And there are really good people, great people in this boat, a very big boat.. I also saw here many other good people I met before they decide to leave this forum because Pooka1 and her direct accomplices. She is in other boat, a very different boat of course.



My own thought is that EVERYONE should be respectful of others on the forum.

And how do you expect the people of the other boat may do their immoral work here? Of course it would be impossible for them.

Pooka1
05-23-2013, 11:10 PM
There was a woman who was using the Spincor brace that disappeared as well. I was actually considering trying it just to see if it would reduce pain. I know she took a lot of hits from people. I don't know why. I have a thread where I document my own experience and treatments. Some of them have turned out negatively for me, but I didn't get dissed for trying.

She claimed she could wear it for two years and get a permanent curve reduction when it is only indicated for pain in adults. It did reduce her pain. There is no evidence an adult can wear a brace for two years and permanently reduce a curve. The moderator admonished her not to make the claim without evidence.

I am looking forward to foofer's radiographs and those of the other people Tom is helping. I know he doesn't have time to crunch the data but I can table and graph the data for him if that helps.

Pooka1
05-23-2013, 11:14 PM
She is in other boat, a very different boat of course.

I don't know what boat you are in but I'm in a cabin aboard the R/V Evidence.

hdugger
05-23-2013, 11:31 PM
categorized the whole forum that way.

Not the whole forum, that's why I apologized to Susie*Bee. A few people. I was referring to the *disagreement* as surgical vs. non-surgical, not referring to a schism running down the whole forum. But, it's just a few people that I'm talking about. It turned out, that Susie knew what I meant. Maybe you do not?


AND WORKED IT OUT VIA PM like ADULTS should.

No, not right. Wildly not right. How does your agreement via PM help the mother just figuring out how to work with a child in a brace, only to discover a thread where bracing parents are accused of lying to their children because their curve advanced. Did you PM that mother as well? How could you? She'd have left before she got to hello.

How does your agreement via PM help anyone but yourself?


go to the "teacher" and report it.

Yes, done. Not at all my first, second, third or even 100th response. But, yes, that is now the only appropriate response. Get it fixed and, if that doesn't work, get out.


I was talking about refuting ideas

What ideas? The blind/blind/naked idea? Do you want me to prove that I'm clothed and can see? The idea that parents who consider bracing are cavalier? That's not really an "idea," per se. It's kind of slander. How does one refute that idea? Prove one's other good deeds? Get one's child into the forum so that he can vouch that you're a good mother? I've seen nary hide nor hair of idea in a very long time. Entrenched positions do not equal ideas.

Here's a question. Why do you think this is a fight between Pooka and I? It's not. I think Pooka is very funny, and I'm not particularly concerned if she thinks I'm educated or knowledgeable enough to think about the things I want to think about. It's not much nevermind, for me. I know what I know. *That's* not the point. Here's the point:

Fact: Every week, I hear a patient going in or coming out of surgery express their thanks for finding a place where people understand and support them.
Fact: Every week, someone who is pursuing bracing or exercise leaves the forum and returns in bursts of one of two posts. Person after person pursuing conservative treatment says that they feel afraid to talk about what they're doing in this forum.

Either that's fine -we just all make nice and send PMs to each other and return the forum to its status quo - or it's not. *That's* the point. And there's only one schism that matters. If you're *fighting* for that status quo, if you're *fighting* to make this a place where surgical patients stay and everyone else feels they must depart, then you and I are not on the same side. Then, yes, I am fighting with you. Not 99% of the posters in here who are just hoping that *we will all just shut up*. But, yes, with you. With Pooka. With anyone who thinks that that status quo is worth fighting for.

I'm not much interested in arguing anymore. I wanted to create a tiny space where someone made it clear to participants seeking conservative treatment that there's nothing wrong with them. I think I've done that. There's not much point in doing anything else.

jrnyc
05-23-2013, 11:31 PM
hey Sharon.
attacks on this forum of a personal nature have become outrageous...
they should not be allowed, in my opinion...

i will stand in anyone's boat...and i can't swim...who is attacked...
so i am IN Sharon's boat...
that means i am up for attack, i am sure...for no reason other than
defending Sharon...who needs no defense...
she is fine all on her own....BUT....
as a social worker and special ed teacher...I HATE BULLIES
there...bring it on if you want to...

personal attacks are sickening...to me and others...

jess

hdugger
05-23-2013, 11:34 PM
Flerc, I know you're trying to help. Please, don't go after Susie. She's a good soul. Read the post again - I sort of misread it the first time myself. She's not fighting with you. She's trying not to fight with anyone, but she's not fighting with you. Just take my word, OK?

jrnyc
05-23-2013, 11:46 PM
what...only go after certain people???
Sharon is a "good soul" too...
she just wants to keep it to research and facts and not
weirdo theories....the words "proved" and "repeatable" come to mind...
having had to take statistics for 3 different graduate degrees....none
in physical sciences, thank goodness....i do remember some of what
research involves...true research, the stuff that can be repeated, verified,
the stuff that is quantifiable....but then people who know research
know what it involves...
why "GO AFTER" anybody here?
that is the point? why can you not stick to ideas...?

"GO AFTER" ideas...not people...
who is anyone here to decide which person is a "good soul"
i will continue to report bullying posts...
i believe Sharon never does...
but i have no problem calling out bullies for "going after" people
in a personal way...
didn't like it in schools and classrooms...it is even worse when so called
"adults" do it
they are supposed to know better!

jess

flerc
05-23-2013, 11:52 PM
I don't know what boat you are in but I'm in a cabin aboard the R/V Evidence.

You only use that world in order to convince people to not hope anything outside of what you promote, without a prove about what you say when you use it. Just only this fact is something extremely immoral and you know it.

hdugger
05-23-2013, 11:58 PM
Oh, sorry, one more thing for Flerc.

So, I can't recall what words you're using, but I think we should stick to:

conservative treatment vs. anti-conservative treatment

and not anything like surgical vs. non-surgical.

The first says what we want to say - there are people who are pursuing these treatments and then people who are against them pursuing those treatments (or quite comfortable with them having to flee the forum in order to discuss those treatments)

I really don't want to leave the impression somehow that we now want to make everyone who's struggling with their surgical decision/recovery/etc uncomfortable. I'd feel just awful if I made a place for the conservative treatment folk and left the surgical folk feeling uncomfortable or out of place. That's the exact opposite of what I want.

So, conservative treatment vs. anti-conservative treatment. I think that narrows it down correctly.

flerc
05-23-2013, 11:59 PM
Flerc, I know you're trying to help. Please, don't go after Susie. She's a good soul. Read the post again - I sort of misread it the first time myself. She's not fighting with you. She's trying not to fight with anyone, but she's not fighting with you. Just take my word, OK?

Yes Hdugger, I not try to fight against her, it's only that is impossible to participate in this war without figthing against someone of the other boat. What she says is not possible, with Pooka1 and her accomplices here. I hope she understand now it.

jrnyc
05-23-2013, 11:59 PM
name calling...an amazing lack of scientific objectivity.
really...some scientific attitude...

stick to facts...name calling is for bullies...and little children.
keep ignoring how all the name calling reflects on your "scientific" viewpoint

jess

hdugger
05-24-2013, 12:06 AM
Yes Hdugger, I not try to fight against her, it's only that is impossible to participate in this war without figthing against someone of the other boat. What she says is not possible, with Pooka1 and her accomplices here. I hope she understand now it.

I don't think she's saying that. I think she's saying that she'd like the whole forum be a place where people help each other. That she sees herself as not one thing or the other, has done both conservative and surgical, and doesn't see why it has to be one thing or the other. It's the same thing I'm saying.

flerc
05-24-2013, 12:16 AM
I interpreted she said every people of this forum are in the same boat and we have not any reason to fight. Of course Pooka1 are not in our own boat and of course surgical or not surgical has nothing to do with that fact. . Maybe I understood in a wrong way what Susie said.
Anyway I updated that post in order to clarify what I was trying to say. Thanks!

flerc
05-24-2013, 12:33 AM
Now I give you an advice: don't waste your time talking about this with Rohrer01. See how many, really many posts I wasted just only in this thread. Is sad, but it is what it is.

jrnyc
05-24-2013, 12:43 AM
excellent way to stimulate debate and discussion...
only write to those who agree with you...
what a scientifically minded attitude...
keep it to the people who you already agree with...
the way to advance science, most definitely...

i see you ignore the posts you cannot deal with...
another example of bullying...
keep writing and speaking to those who agree with you...
way to expand your mind...

jess

flerc
05-24-2013, 12:55 AM
There are NOT two camps of people.

Of course there are 2 very very differents camps here. Nobody may don't know it. The people worried about scoliosis and people doing (or helping to do) what the title of this thread says.



I'm not in a camp, either.

Yes you are in one.



Flerc thinks I'm doing something immoral.

And what do you expect I believe? I'm not stupid.. or I try to not see it.



I'm being accused for what?


I should to repeat it? How many times? Is necessary again? Of course not and you know it.



Because one member is being singled out by a band of people mad at her? I've had my share of problems with this person AND WORKED IT OUT VIA PM like ADULTS should. If it can't be worked out and a person feels bullied, then go to the "teacher" and report it.


mmm.. good pupil.. far from your teacher yet but a good prospectus.

jrnyc
05-24-2013, 01:01 AM
rohr...you are wasting your time trying to communicate like an adult..
bullies don't do that...
so now they disapprove of you...guess you do not fall into line along
with their rules...
and talk about being a pupil....funny how flerc gives orders to hdugger...
really funny,...who to write to and not to write to...
very OPEN MINDED SCIENTIFIC attitudes...
stay with the people who agree with you 100%...way to open
discussion and debate.

it is funny how they ignore posts they cannot deal with...
one mark of bullying...

now the bullying expands to you....very nice way to participate in
a forum.

jess

flerc
05-24-2013, 01:08 AM
what...only go after certain people???
Sharon is a "good soul" too...
she just wants to keep it to research and facts and not
weirdo theories....the words "proved" and "repeatable" come to mind...
having had to take statistics for 3 different graduate degrees....none
in physical sciences, thank goodness....i do remember some of what
research involves...true research, the stuff that can be repeated, verified,
the stuff that is quantifiable....but then people who know research
know what it involves...
why "GO AFTER" anybody here?
that is the point? why can you not stick to ideas...?

"GO AFTER" ideas...not people...
who is anyone here to decide which person is a "good soul"
i will continue to report bullying posts...
i believe Sharon never does...
but i have no problem calling out bullies for "going after" people
in a personal way...
didn't like it in schools and classrooms...it is even worse when so called
"adults" do it
they are supposed to know better!

jess

How may I report bullying posts? I will just only do a google search with Pooka1 & idiot / ignorant desperate.. 'there is no evidence..' .. the problem is they will never finish to read all those posts..
It not surprise me what I have read about Pooka1, since are you who said it.

jrnyc
05-24-2013, 01:14 AM
what?
could you translate that please...
makes zero sense...
???????????????
"...since are you who said it..."
what does that mean...that i said something?
what? what i said was you are bullying everyone who dares not
agree with you by name calling, rather than sticking to science and theories...
scientists do not need to sink to name calling...it is not objective at all...
but a sign of a childish mind.

why are you obssessed with Sharon?
she is not a bully...
perhaps check the dictionary to see what the word "bully" means.

"a blustering, quarrelsome, overbearing person who habitually badgers and intimidates......"

jess

flerc
05-24-2013, 01:24 AM
rohr...you are wasting your time trying to communicate like an adult..
bullies don't do that...
so now they disapprove of you...guess you do not fall into line along
with their rules...
and talk about being a pupil....funny how flerc gives orders to hdugger...
really funny,...who to write to and not to write to...
very OPEN MINDED SCIENTIFIC attitudes...
stay with the people who agree with you 100%...way to open
discussion and debate.

it is funny how they ignore posts they cannot deal with...
one mark of bullying...

now the bullying expands to you....very nice way to participate in
a forum.

jess

Is really incredible We are the bullies here! MY GOD!!!!
Sorry Jess, we should to pay you more attention since probably you are the older accomplice of the bulling/immoral work done here.. but certainly the kind of things you use to say..I'm giving orders to Hdduger.. I prefer to respond to the more inteligent work that Rohrer01 is doing.

jrnyc
05-24-2013, 01:29 AM
yes, the bullies...
calling someone "evil" or "immoral" is name calling...
THAT is bullying...
saying someone's theories don't make sense and then giving the
SCIENTIFIC reasons why is NOT bullying...

i am not immoral for agreeing with or disagreeing with an idea...
nor is Sharon...or anyone else on forum...
and i am no one's "older accomplice"

so i am saying is to stop the name calling...
science stands on it's own...
it doesn't need to call names or resort to childish character assassination...
science can speak for itself...

now rohrer does good work...a minute ago she was not to be talked
to as it would be a "waste"

jess

jrnyc
05-24-2013, 01:33 AM
well, thank goodness for interesting people like hdugger...
humility is a beautiful thing...

this nonsense is boring...only of interst to the bullies, who enjoy name calling
when they do not have the science to go to.

sorry we are not all as "interesting" as hdugger and friends... we just don't have their
"genius"...
somehow, i think all those of us not as "interesting" will be able to
live with that.

jess

flerc
05-24-2013, 01:34 AM
what?
could you translate that please...
makes zero sense...
???????????????
"...since are you who said it..."
what does that mean...that i said something?
what? what i said was you are bullying everyone who dares not
agree with you by name calling, rather than sticking to science and theories...
scientists do not need to sink to name calling...it is not objective at all...
but a sign of a childish mind.

why are you obssessed with Sharon?
she is not a bully...
perhaps check the dictionary to see what the word "bully" means.

"a blustering, quarrelsome, overbearing person who habitually badgers and intimidates......"

jess

Take it easy Jess, I was askking you how may I report the bulling Pooka1's posts. I perfectly know what bully means. But of course it has not any sense that we talk.. and is not a matter of different languages of course.

jrnyc
05-24-2013, 01:39 AM
it IS a language issue...
because the language of kindness, open mindedness and respect for
the right to an opinion differing from one's own is apparently a limited thing on this thread...

and i am now very bored with this thread...hardly worth staying
up any later...

i am sure your friend hdugger can tell you how to flag any post as
offensive...

jess

flerc
05-24-2013, 01:43 AM
[COLOR="#0000CD"]
i am not immoral for agreeing with or disagreeing with an idea...


specially if the idea is to do what the title of this tread says and do it in an immoral way.


[COLOR="#0000CD"]
and i am no one's "older accomplice"


Are you trying to say I should have to say you are the 'oldest'?.. I think you are right. Sorry!

hdugger
05-24-2013, 01:45 AM
Is really incredible We are the bullies here! MY GOD!!!!

I'm calling your wife, Flerc.

It really is OK. Sometimes people just don't like you, or don't get you. You sort of have to let them. It's not the law that people have to see you as a good man fighting the good fight. Some people might just think you're flailing your arms like a mad man. People get to decide what they want to decide about you. We're not trying to discuss exercise, or some other conservative treatment. They're not disrupting our work. Let them decide not to like you, or me, or whoever. It's fine. That kind of stuff you just have to let go. If there's one thing I've learned on the internet, it's that some people don't think I'm nearly as nice as I think I am.

If you start arguing your reputation, you're going to find that even you start to think you're not as nice as you think you are (or, however you'd say that). If you start going tit-for-tat (good lord, what can you think I'm saying) you're going to start trading angry post for angry post, and then we're never going to get anywhere.

You can call out behavior, you can point out the things you want to change, but I'd really, really strongly recommend letting up on the "immoral", "accomplice" language. No matter what is said to you, you have to respond back *less* harshly. Otherwise, we create the ugliness we're trying to cure.

[Edit: Added quotes around "immoral" "accomplice"]

hdugger
05-24-2013, 01:47 AM
Are you trying to say I should have to say you are the 'oldest'?.. I think you are right. Sorry!

Hey!! As a person of a certain age, I tell you we are *not* going to start snipping at people about their age!!! I am looking up your wife's number *right* now.

flerc
05-24-2013, 01:55 AM
No please :) .. and of course I was not referring to the age.. it would not be a good bussines for me..

Susie*Bee
05-24-2013, 04:51 AM
Flerc-- by "boat", I just meant the big scoliosis problem. The main problem that drew us to the forum to begin with.

jrnyc
05-24-2013, 05:25 AM
interesting that a long post by hdugger about what is interesting, what
isn't, who writes interesting posts and who does not, who has interesting
ideas and who does not...was deleted...it was a long post...
seemed to have had instructions for who flerc ought to spend time paying
attention to and who he should not...

thus, i realized we can not all be as interesting, brilliant and genius as
hdugger...and i realized how humility was nowhere to be found...
good that there is ONE person on forum who KNOWS what is interesting
to all and what is not....
good for ONE person to make the rules of who his friends should write
or respond to, who to ignore...
thank goodness no one else has to think for themselves about what
constitutes interesting!

these types of blustering, argumentative threads have become
boring to me...and have nothing to offer of any use for any scoli
patients, in my opinion.

jess

Pooka1
05-24-2013, 06:15 AM
so i am saying is to stop the name calling...
science stands on it's own...

jess

Jess, thank you for trying to inject reason and ration into this. I am forever grateful for you. :-)

What evidence can you show to someone who doesn't value evidence to show them they should be valuing evidence?

This is why this war on science will go on interminably.

Pooka1
05-24-2013, 06:29 AM
She claimed she could wear it for two years and get a permanent curve reduction when it is only indicated for pain in adults. It did reduce her pain. There is no evidence an adult can wear a brace for two years and permanently reduce a curve. The moderator admonished her not to make the claim without evidence.

I am looking forward to foofer's radiographs and those of the other people Tom is helping. I know he doesn't have time to crunch the data but I can table and graph the data for him if that helps.

To further clarify and underline, the moderator also admonished her to limit her comments to her own experience and not make sweeping claims without evidence.

People have made some sweeping claims in these and other threads for the efficacy of conservative treatments and I look forward to seeing the evidence for the claims. This is one sure-fire way to sweep away skepticism and that is to post the evidence. If those methods work then we won't need a surgery section and this forum can be ENTIRELY PT with everyone's blessing.

There is a claim people are being harmed by being driven away. Prove it.

On the other hand, we have the following:

1. at least one case where the fusion in a child was longer for having tried and failed with a conservative treatment. Can we doubt there are others?
2. people openly advocating that radiographs are not necessary. (Nobody would know who Martha Hawes is if she didn't publish her serial radiographs. Does anyone seriously doubt that?)
3. people claiming that braces are harmful in the long term and counterproductive. (There is evidence bracing actually reduces curves in JIS for example)

THOSE are the dangerous claims that have no evidence to my knowledge.

Pooka1
05-24-2013, 06:36 AM
All of you silent folk, start shouting!

Actually posting evidence works better than shouting. In fact it works perfectly.

Pooka1
05-24-2013, 06:44 AM
Wow, it's the NSF version of the rapture :)

Here is a pet-sitting service for those who are raptured and leave their pets behind...

http://www.aftertherapturepetcare.com/

Pooka1
05-24-2013, 06:54 AM
Originally Posted by rohrer01: "AND WORKED IT OUT VIA PM like ADULTS should."



No, not right. Wildly not right. How does your agreement via PM help the mother just figuring out how to work with a child in a brace, only to discover a thread where bracing parents are accused of lying to their children because their curve advanced. Did you PM that mother as well? How could you? She'd have left before she got to hello.

Here's an idea. Maybe parents should be consulting with TRAINED PROFESSIONALS and not random yahoos on the interwebs when it comes to serious medical conditions and possible treatments.

Call me crazy.

The woman in the testimonial said she felt lied to over bracing efficacy. The fact that I copied and pasted that makes the woman NOT feel lied to and makes me part of the story apparently. Strange world that.

I think there are people here who want to control information. I think they are okay with a surgeon telling a parent X but if I state THAT a surgeon told a parent X then that is somehow harmful. The fact of the surgeon stating it to a parent magically becomes irrelevant and we whirlwind into a state where the person relaying the information matters and the information is irrelevant.

Trying to be the unilateral gatekeeper on knowledge and resources will NOT stand. Nobody here can decide what other people should or should not read. You will NOT succeed on that endeavor. Who do you think you are?

I do NOT suggest certain frequent flyers in the research section should stop posting scientifically inaccurate material. I do suggest they stop complaining when someone with some science training corrects the material.

Those counterfactual posts do serve a purpose to show the abysmal state of science education in the US. Science education is constantly under assault and we are seeing the results in this forum.

Love,

Rohrer's pencil carrier

Pooka1
05-24-2013, 07:12 AM
Just take my word, OK?

No. People should think for themselves. I take it from the bulk of your posts that you disagree.

mariaf
05-24-2013, 08:33 AM
hey Sharon.
attacks on this forum of a personal nature have become outrageous...
they should not be allowed, in my opinion...

i will stand in anyone's boat...and i can't swim...who is attacked...
so i am IN Sharon's boat...
that means i am up for attack, i am sure...for no reason other than
defending Sharon...who needs no defense...
she is fine all on her own....BUT....
as a social worker and special ed teacher...I HATE BULLIES
there...bring it on if you want to...

personal attacks are sickening...to me and others...

jess

Yes, Jess - it seems it is OK to say "leave Susie alone" (just as an example) or "leave so-and-so alone", but if someone said "leave Sharon alone" they'd be attacked, labeled "cohorts" and included as part of her "immoral work" (a term that keeps being used in reference to Sharon's posts, but of course with no substantiation or explanation).

Maybe it's the New Yorker in us, but I really hate bullies too. Even my daughter has stood up for kids getting bullied in school - I suppose she gets it from me.

Funny, when I used to mention VBS several years ago, I was attacked MERCILESSLY by one poster in particular who doesn't seem to be around anymore. I was accused of "RECRUITING CHILDREN FOR EXPERIMENTATION" (yes, that's what was posted). This accusation was made simply because I shared my son's story and when another parent would ask for information on VBS I would share my experience, tell them what I knew and suggest they do additional research IF they were interested.

Reminds me of this situation because a few people took my back (although I, like Sharon, can take care of myself) and then there were those who claimed the other poster making the accusations did nothing wrong.

Joe O'Brien never put a stop to the attacks on me but fortunately I'm a big girl and was very grateful for those who supported me here, so I will ALWAYS open my mouth - just like my daughter did - if I feel someone is being bullied, singled out or treated differently than others.

It seems some people are hell bent on making everything personal rather than discussing ideas, which leads one to wonder why they avoiding those discussions.

flerc
05-24-2013, 08:55 AM
Flerc-- by "boat", I just meant the big scoliosis problem. The main problem that drew us to the forum to begin with.

Susie, I understand what you said but the work Pooka1 and her accomplices are doing here not seems to be the work that someone worry about a personal scoliosis problem may do. Certainly they seem to be very worry about the possibility of people wanting to do something different to what the o. w. medical community says. Is extremely obvious their work here. I hope you understand me now how I say we are in absolutely different boats here.

mariaf
05-24-2013, 09:18 AM
Susie, I understand what you said but the work Pooka1 and her accomplices are doing here not seems to be the work that someone worry about a personal scoliosis problem may do.

Flerc,

I have asked over and over again if we could stop the name calling, but I guess you don't see THAT as an obstruction to helping people. Better to waste time referring over and over again to "Pooka and her accomplices" - how is that helping those you claim to want to help?

I assume I am one of Sharon's "accomplices" because I dare ask that we stop attacking her and get back to discussing ideas rather than personalities because I thought that was what this forum was for. Rather, this thread seems to have become a forum for you and others to let off steam, spread sarcasm and continue personal attacks. Not very productive in my view, but what do I know?

When you say the work of Sharon and her accomplices "not seems to be the work that someone worry about apersonal scoliosis problem may do" can you please explain what you mean so that I can defend myself? Are you saying I don't care about people with scoliosis? (My track record would gravely dispute that). Are you saying I have never had to personally worry about someone with scoliosis? (Again, not accurate).

I know there is a language barrier and I honestly don't know what you meant.

hdugger
05-24-2013, 09:43 AM
No please :) .. and of course I was not referring to the age.. it would not be a good bussines for me..

Yes, I knew you weren't, I just wanted to point out how it read in English.

When I took Spanish, in response to a question from my teacher about how one would respond to the question "How much will this apple cost me," I helpfully told him that I would put him to bed and that I would cost him five pesos. (I mixed up "cuesta" and "acostar" (I think) and then totally flubbed which thing was costing). Anyway, just to say that I'd get into *far* more trouble trying to have a discussion on a Spanish-speaking forum.

flerc
05-24-2013, 09:50 AM
She claimed she could wear it for two years and get a permanent curve reduction when it is only indicated for pain in adults. It did reduce her pain. There is no evidence an adult can wear a brace for two years and permanently reduce a curve. The moderator admonished her not to make the claim without evidence.


Of course it not surprises me that the moderator have taken actions against people doing more difficult your immoral work here, as it seems she did also with Tom. And of course donít do absolutely anything against you and your direct accomplices. You continue using the term Ďevidenceí as you want without any problem in order to continue doing what you do here. She never will amonish you because not prove what you say, but yes to people not doing what you promote. Of course the moderator is the main accomplice here and not because her posts doing the same that you and your other accomplices does here, but because this kind of actions and not actions.
In fact the moderator is the real problem here not you.. at least if we decide to stop there and not continues going up.
Sorry Hdugger but I knew what I said when I said I would not hope any kind of help here, except about good members (news or old) understanding what is happening here,
In fact the moderator is the real problem here not you.. at least if we decide to stop there and not continues going up.
Sorry Hdugger but I knew what I said when I said I would not hope any kind of help here, except about good members (new or old) understanding what is happening here,
I have not any element to not think that the only kind of Ďhelpí we may expect is to be banned.. or other actions as Pooka1 commented tending to silent us. Of course as ever tending to make more easy the immoral work done here since many years ago.
People wanting to do immoral works finally use the power in order to continue doing it. And of course it works! Someone was right when he said to his opponent using the power (in a more wild form) 'Gross, ideas can not be killed'. He was right, but certainly may be silenced.

hdugger
05-24-2013, 10:03 AM
Whoa there big fella!

I just did *exactly* the same thing that Linda did, like two seconds ago. Someone made an overstatement about the risks of surgery, and I corrected them. Nicely (I hope) but clearly a correction.

It *is* Linda's job to ask people not to lead other people astray about expected results. I'd fault her if she wasn't doing that. I do not think that Linda sees the back and forth as anything other than that - just people disagreeing. That you and I see it as something different does not mean that Linda sees it the same way but just chooses to ignore it. I just think she sees it differently, and acts in accordance with what she sees.

The issue with the adult who braced is not that someone corrected her statement, but that people slandered her character and her intelligence. *That* is not a useful, factual correction, and that is the kind of thing I want to see stopped.

hdugger
05-24-2013, 10:25 AM
I'd say something else about this, this time to Pooka.

I find your frequent statement that thoraic surgery is "one stop shopping" very troubling. And I found the following series of two posts in a row to a patient trying to decide on surgery also very troubling.

First, you repeated the "one stop shopping" thing. Then you mentioned the case where a 30 degree curve just collapsed. Yes, you said that it was rare, but it was still an odd thing just to throw into a reasoned discussion. It's a single case, the sort of thing we don't usually quote to someone trying to figure out the expected outcome. Usually, people are told to expect the expected outcome. I do not, for example, tell people trying to decide on surgery that I've seen patients on this forum who died during surgery/recovery, even though it is true. It's not what I would expect, and sharing it gives an overly frightening perception.

When a parent has a child with a curve barreling down on them, it is perfectly reasonable and kind to tell them that their child will go on to have no problems. It would be cruel to say anything else to them.

But, if someone is just considering surgery and has some time to consider it, then painting an overly-rosy picture of surgery based on information that we just don't know (how will pedicle screws turn out 20/30/50 years down the road), coupled with quoting a single troubling case about what happens if you don't have surgery seems like more then just sharing information. It feels like spin - true enough that no one calls it out as lie, but meant to sway opinion rather then inform.

jrnyc
05-24-2013, 10:29 AM
hey Maria
your experience with scoliosis in your family and mine having scoli,
count for nothing, apparently...go figure...
but we come from a different background of being an adult, not needing
name calling, and not being afraid of the ideas and theories of others...

Sharon....the idea that you ever needed "immoral accomplices" or
accomplices of any kind, is pretty funny...
i just cannot stomach name calling and bombastic bullying that comes
from these unscientific minded people, who resort to name calling in their
fear of any ideas that are different from their own...

but they become repetitive, boring, and tiresome...
so i wish you both a happy holiday wkend...
i expect to enjoy it without returning to this thread for any reason...
the name calling has overtaken any possible discussion of ideas.

jess

hdugger
05-24-2013, 10:38 AM
Gently, this:



i just cannot stomach name calling

cannot reasonably coexist in the same realm as this


these unscientific minded people, who resort to name calling in their
fear of any ideas that are different from their own...

If one does not like name-calling, one tries to avoid saying unpleasant things about others.

flerc
05-24-2013, 10:42 AM
Flerc,

I have asked over and over again if we could stop the name calling, but I guess you don't see THAT as an obstruction to helping people. Better to waste time referring over and over again to "Pooka and her accomplices" - how is that helping those you claim to want to help?

I assume I am one of Sharon's "accomplices" because I dare ask that we stop attacking her and get back to discussing ideas rather than personalities because I thought that was what this forum was for. Rather, this thread seems to have become a forum for you and others to let off steam, spread sarcasm and continue personal attacks. Not very productive in my view, but what do I know?

When you say the work of Sharon and her accomplices "not seems to be the work that someone worry about apersonal scoliosis problem may do" can you please explain what you mean so that I can defend myself? Are you saying I don't care about people with scoliosis? (My track record would gravely dispute that). Are you saying I have never had to personally worry about someone with scoliosis? (Again, not accurate).

I know there is a language barrier and I honestly don't know what you meant.

May be, but I donít believe is a language matter as you ever say when you says to not understand what I say about Pooka1ís work. In any case is a matter of different conceptions. You should not to confuse name callings with facts and attacks with defense. Do you know that if someone enter to your house trying to kill your family and in order to avoid it, you kill him you would not be accused to be a killer? So why are you saying to people against what she does here, that we are attacking her? Do you really believe she never REALLY attacked anybody here? Why you not say her what are you saying to me? What strange idea you have about what an attack really means!
And what a strange way to help people really worry about a health problem!
Why I should to hide the fact that you are an accomplice? If you not realize it, I donít understand you, and itís not because a language barrier.


May be, but I donít believe is a language matter as you ever say when you says to not understand what I say about Pooka1ís work. Why other people understand me? In any case is a matter of different conceptions. You should not to confuse name callings with facts and attacks with defense. Do you know that if someone enter to your house trying to kill your family and in order to avoid it, you kill him you would not be accused to be a killer? So why are you saying to people against what she does here, that we are attacking her? Do you really believe she never REALLY attacks anybody here? Why you not say her what are you saying to me? What strange idea you have about what an attack really means!
And what a strange way to help people really worry about a health problem!
Why I should to hide the fact that you are an accomplice? If you not realize it, I donít understand you, and itís not because a language barrier.

Pooka1
05-24-2013, 10:48 AM
Called someone unscientific minded is not name-calling. They either are or are not thinking scientifically. If folks really thought that was a slur they would all be thinking scientifically or at least advocating it. But we don't see that so clearly some people are not insulted by being told they are not thinking scientifically. In fact the foot soldiers in the war on science would take it as an insult if you accused them of thinking scientifically since they think science is the work of the devil (in-between hypocritically taking antibiotics that are designed with the principle of evolution in mind).

Thinking scientifically or not is a choice. People are not their ideas and they can learn. That's why it isn't name calling. Calling someone ignorant is also not name calling. It just means they don't know some fact case. We are all ignorant about many things.

Impugning people's intelligence is as bad as any other form of discrimination because it is largely a biological trait as far as I know. Just like sexual orientation.

flerc
05-24-2013, 11:43 AM
My God!! Do you are pretending you never used that terms (ignorant, fool, desperate..) in order to attack people saying something against your work here? Fortunately we have tons of evidence.
And certainly, do you believe you think in a scientifically way?. You have never showed that. Do you believe you have a scientist knowledge that ignorant folks cannot understand, so they try something different of what you promote? I donít believe you may believe that, and of course if it would be true, you would not be doing what you do in that immoral way.
Stop to continue talking in the name of science. Stop to denigrate it.

Pooka1
05-24-2013, 12:02 PM
There are 223,054 views of this thread.

If you can believe it.

mariaf
05-24-2013, 12:02 PM
When you say the work of Sharon and her accomplices "not seems to be the work that someone worry about apersonal scoliosis problem may do" can you please explain what you mean so that I can defend myself? Are you saying I don't care about people with scoliosis? (My track record would gravely dispute that). Are you saying I have never had to personally worry about someone with scoliosis? (Again, not accurate).

Flerc,

You did not explain what you meant by "not seems to be the work that someone worry about a personal scoliosis problem may do" and I really would like to know.

Can you answer this for me please (and kindly without mentioning Sharon or the fact that you consider me her accomplice)? Can we just stick to what that quote meant please?

Thanks.

hdugger
05-24-2013, 12:07 PM
Logically, it does not make sense that every person who considers conservative treatment *also* has an illogical mind, or that every person who is not interesting in conservative treatment *also* has a logical mind. That the discussions always seem to break down in this way - that people who consider conservative treatment need to have their logic questioned while those who consider surgery do not - suggests that something else is at play.

I'd also say that, in my case, I was considered pretty clear headed right up until the moment that I began to participate in one of Dingo's threads. Again, it just seems odd that people can be thinking clearly one minute and then *poof* suddenly their thought is all muddled.

I *believe* the more parsimonious explanation is that, if people disagree with you, they appear to be illogical. That would explain both cases more reasonably.

mariaf
05-24-2013, 12:09 PM
My God!! Do you are pretending you never used that terms (ignorant, fool, desperate..).

Sharon just stated what she meant by ignorant:

"It just means they don't know some fact case. We are all ignorant about many things."

I could say I am ignorant when it comes to making car repairs, for example. Meaning that I simply don't know enough to lift a car hood and fix an engine. None of us know everything about everything.

Try not to look for an argument in every single word she uses and take it in the worst possible context. Imagine if we did that with every word that everyone posts......

Pooka1
05-24-2013, 12:11 PM
At first you admitted you didn't even read Dingo's biochemistry threads. Lately, you say you are coming around to the germ theory of scoliosis.

If that isn't the clearest departure from scientific thinking I don't know what is.

YOU changed; The world around you did not.

hdugger
05-24-2013, 12:29 PM
Sharon just stated what she meant by ignorant:

"It just means they don't know some fact case. We are all ignorant about many things."

Ignorant has two definitions. The second is the one you point out - ignorant *of* something. The more common, first definition is "Lacking knowledge or awareness in general; uneducated or unsophisticated". That is the one that is meant by saying that someone is ignorant (rather then that they're ignorant *of* a specific fact.)

The first construct is simply insulting. One does not refer to other people as ignorant and mean it kindly.

If one is trying to use the second meaning and fill in some knowledge which the other person does not have (is ignorant of), one shares that fact with them. Once one has shared that fact, presumably they are no longer ignorant of that fact and one can stop using *either* form of the word.

[Edit: Actually, I suspect that if you took your car into a shop and described what you thought the problem was and they said "ma'am, you are ignorant of the way that cars work" you'd turn on your heels and leave. So, even the second construct is considered insulting, when said about someone else.]

flerc
05-24-2013, 01:11 PM
Sharon just stated what she meant by ignorant:

"It just means they don't know some fact case. We are all ignorant about many things."

I could say I am ignorant when it comes to making car repairs, for example. Meaning that I simply don't know enough to lift a car hood and fix an engine. None of us know everything about everything.

Try not to look for an argument in every single word she uses and take it in the worst possible context. Imagine if we did that with every word that everyone posts......

And about scoliosis? Do you are not also ignorant? Say me who are and not are ignorant here.

mariaf
05-24-2013, 01:23 PM
flerc,

You STILL have not explained what you meant by "not seems to be the work that someone worry about a personal scoliosis problem may do" and I would STILL like to know so I can respond.

flerc
05-24-2013, 01:28 PM
Tell me first what part you don't understand and I'll try to say it in a better English.

mariaf
05-24-2013, 01:35 PM
When you say the work of Sharon and her accomplices "not seems to be the work that someone worry about apersonal scoliosis problem may do" can you please explain what you mean so that I can defend myself?

Are you saying I don't care about people with scoliosis? (My track record would gravely dispute that).

Are you saying I have never had to personally worry about someone with scoliosis? (Again, not accurate).

Please see above.

flerc
05-24-2013, 01:45 PM
I'm really short of time now and I don't want to forget this question for you:
You said that 'ignorant' in the context Pooka1 used that term is not a name calling. Why do you believe 'accomplice' in the context I use it is a name calling? I have explained what it means for me.

mariaf
05-24-2013, 01:57 PM
I'm really short of time now and I don't want to forget this question for you:
You said that 'ignorant' in the context Pooka1 used that term is not a name calling. Why do you believe 'accomplice' in the context I use it is a name calling?

Because you used it along with terms like "immoral", so it was very clear what you meant.

Pooka1
05-24-2013, 02:01 PM
I want to make it abundantly clear that I don't want anyone horning in on my "immoral" gig.

This mean you, Maria, and Jess and Rohrer!

hdugger
05-24-2013, 03:06 PM
flerc, I don't want you to feel that I'm turning on you in any way. I am in agreement that there is a serious issue which silence is not improving, and I am trying to do my part to help and appreciate that you are trying to do yours.

I would say, though, that I find the phrase "immoral accomplice" not only overcharged, but unhelpful. It sounds like Satan's minions are swarming. It's so overcharged that it just sort of drowns out everything else you're saying and makes it seem as if that, too, is just some overstatement.

Could you say it in some way which communicated the same thing, maybe even more clearly, without making me turn around to see if everyone nearby has cloven hoofs?

I think "harmful" is a good word. It says what I think you want to say - that's it's not just some he said/she said, but that you're speaking up because you think there is real damage being done. Not hurt feelings, not people needing to get a drink after posting because someone was short tempered. But real damage. In this case, that people seeking conservative treatment do not feel comfortable posting on this board. That's a simple fact. You only have to look around to see that person after person seeking conservative treatment has left the forum, and has said that the reason they left was because they did not feel comfortable posting here. You only have to stop for a second to realize that you have never seen the same thing happen with someone pursuing surgical treatment.

And then, you leave it up to the people you're talking to to decide how they feel about that. Are they comfortable with that? Do they feel like that's the purpose of the forum, to only comfortably support surgical patients? If not, how does that make them feel. Or, OTOH, maybe they don't think it's a problem at all? Maybe they feel like conservative treatments are just so dangerous that posters talking about it should be driven off.

You sort of have to just state what you see as clearly as you can, without telling people how they must feel about it. If you tell them how they must feel, they're just going to get annoyed with you and ignore everything you're saying.

flerc
05-24-2013, 03:51 PM
flerc, I don't want you to feel that I'm turning on you in any way. I am in agreement that there is a serious issue which silence is not improving, and I am trying to do my part to help and appreciate that you are trying to do yours.

I would say, though, that I find the phrase "immoral accomplice" not only overcharged, but unhelpful. It sounds like Satan's minions are swarming. It's so overcharged that it just sort of drowns out everything else you're saying and makes it seem as if that, too, is just some overstatement.

Could you say it in some way which communicated the same thing, maybe even more clearly, without making me turn around to see if everyone nearby has cloven hoofs?

I think "harmful" is a good word. It says what I think you want to say - that's it's not just some he said/she said, but that you're speaking up because you think there is real damage being done. Not hurt feelings, not people needing to get a drink after posting because someone was short tempered. But real damage. In this case, that people seeking conservative treatment do not feel comfortable posting on this board. That's a simple fact. You only have to look around to see that person after person seeking conservative treatment has left the forum, and has said that the reason they left was because they did not feel comfortable posting here. You only have to stop for a second to realize that you have never seen the same thing happen with someone pursuing surgical treatment.

And then, you leave it up to the people you're talking to to decide how they feel about that. Are they comfortable with that? Do they feel like that's the purpose of the forum, to only comfortably support surgical patients? If not, how does that make them feel. Or, OTOH, maybe they don't think it's a problem at all? Maybe they feel like conservative treatments are just so dangerous that posters talking about it should be driven off.

You sort of have to just state what you see as clearly as you can, without telling people how they must feel about it. If you tell them how they must feel, they're just going to get annoyed with you and ignore everything you're saying.

Sorry Hdduger, I'm at work, then I'll reply about what I'm seeing in your post, by now I only can tell you I use (or I try) to say what I see regardless how may it sounds

hdugger
05-24-2013, 03:53 PM
OK, here's exactly what we've been talking about.

******
Originally Posted by jlp1
and her curve had been reduced to 28 degrees.
her curve has been reduced to 23 degrees.
Hi. Do you have these radiographs? Have you had an orthopedic surgeon measure them?

Might it help to have your orthopedic surgeon measure these also since you are paying CLEAR so much money?

There is a before an after thread for results of surgery but I think there should be one for results of conservative and alternative treatments also. It would be a contribution if you posted your daughters before and after radiographs to that if you were okay with that. Thanks.

******

I'd take more time to parse it in a more even-handed way, but really, what the hell! I posted in response, but it's worth repeating it here: in all my years on the forum, I don't believe I've *ever* seen a parent just entering the forum whose child had had surgery asked to post their before and after xrays. They may post on their own, but I don't believe I've ever heard some *asked* to post them. If it has happened, it has happened very, very, very rarely. And yet, if one uses a conservative treatment and very cautiously and without any promises or sweeping statements describes their experiences, *this* is how they're greeted? A *second* question about whether their surgeon measured them (I'd already asked), something about CLEAR charging her so much money. And then, post your xrays? Really? What ever happened to "I'm so happy to hear that your daughter is doing well?"

At the very least, anyone who'd seen surgical patients post previously would sense that they were being treated very differently. At the most, it might very well leave someone thinking that we think they're lying and need to see the xrays for ourselves in order to be certain. No matter what your interest might be in seeing those xrays, to ask someone to post their xrays *as a greeting* would be almost guaranteed to have a chilling effect.

I am shaking my head is disbelief so hard that you must be able to hear the marbles rolling around out there.

Why would you expect someone interested in anything other than surgery to hang around? Is it really your intention to *make* them leave?

Pooka1
05-24-2013, 04:10 PM
There is an ENTIRE THREAD on before and after surgical radiographs.

While nobody thinks it is the least bit rude to ask for those, there seems to be a social taboo against asking for radiographs from conservative and alternative treatments.

WHY? Why is that? If they claim to reduce curves then where is the rudidity of asking to see evidence that just like folks ask to see the reductions with surgery?

Radiographs are irrelevant if the claim is that pain is reduced. They are OBLIGATORY if the claim is the curves are reduced. Science/evidence 101.

I ask AGAIN. Would anyone have ever heard of Martha Hawes if she didn't publish her serial radiographs? If it's so rude asking for radiographs for conservative treatments then why did she publish those instead of just claiming she reduced her curves???

I suggest Hawes KNEW she had to publish her radiographs because she is a scientist and understands the centrality of evidence for claims. Can you imagine her trying to publish her case without those?

Pooka1
05-24-2013, 04:13 PM
Why would you expect someone interested in anything other than surgery to hang around?

I expect people who aren't interested in evidence to leave. Treatment type is irrelevant. People are either interested or not interested in evidence for surgical or non-surgical treatments.

Evidence is the only way of knowing anything.

jrnyc
05-24-2013, 06:17 PM
Sharon...weren't you recently asked if you would post radiographs of
your daughters' X rays...?
or was it that you were asked the degrees of your daughters' curves
before and after surgery...?
i definitely remember you were asked about your kids...their curves...
and i thought the questioner also asked to see X rays...
if i took the time to look for it, i could find the post that asked...

maybe you remember it...?

jess

flerc
05-24-2013, 06:29 PM
When you say the work of Sharon and her accomplices "not seems to be the work that someone worry about apersonal scoliosis problem may do" can you please explain what you mean so that I can defend myself?

Are you saying I don't care about people with scoliosis? (My track record would gravely dispute that).

Are you saying I have never had to personally worry about someone with scoliosis? (Again, not accurate).

Please see above.

I have not time for this. It seems I must to repeat always what I said before. In this forum I would to be talking about scoliosis, having meaningful and really long talks as I had time ago here with Kevin_Mc without your friend bothering that time.
And always I read something about you is because you came in rescue of your friend. What the hell has to do this talk with a health problem that someone may has here?
So you really have time for this, you don't need to spend your time talking about this in order to help people here as you said you do. You may talk about Vbs or whatever you want without any need to do what you always do when people try to keep a place here in order to talk about what needs to talk . So we are defenitely in different boats as I said to Susie. Maybe you are helping many people here but you are hurting others.
And if you don't understand, read what I said to Rohrer01, I don't want to repeat again why people doing what you always do are accomplices here.

Pooka1
05-24-2013, 06:33 PM
Sharon...weren't you recently asked if you would post radiographs of
your daughters' X rays...?
or was it that you were asked the degrees of your daughters' curves
before and after surgery...?
i definitely remember you were asked about your kids...their curves...
and i thought the questioner also asked to see X rays...
if i took the time to look for it, i could find the post that asked...

maybe you remember it...?

jess

Yes and I certainly took no offence at being asked! I responded I had already posted them in because why not?

Is there a social taboo against asking ONLY folks doing conservative therapies for before and after radiographs but not against surgical before and after radiographs? I didn't get the telegram nor do I understand that social taboo if it exists. We have an entire thread of surgical before and after and yet no similar thread for conservative treatments that claim to reduce curves. Why?

hdugger
05-24-2013, 06:41 PM
I believe I remember the exchange. Sharon had asked yet another conservative treatment parent to post their xrays (was it Tom? was it Flerc?) and that person had *responded* by asking her if she could post hers.

But that's still not the point I'm trying to make

Patient after patients posts their happy results of surgery, and we congratulate them. The first patient I've seen in months from Clear posts their happy results and they are asked, without friendly greeting, without so much as a how-de-doo:

* (a second time) if their surgeon has measured it
* if they can post their xrays

as a *greeting*. As their first, "Hey, welcome to our forum"

Questions:

- Do you think that person will feel as welcomed, as safe, as at home as the surgery patient who has been roundly welcome and congratulated by everyone?
- Do you think that person will be as likely to come back, to post again, to give updates?

and, I guess,

- If you don't think they'll feel as welcome or be as likely to come back, does that bother you?

Pooka1
05-24-2013, 06:56 PM
- If you don't think they'll feel as welcome or be as likely to come back, does that bother you?

Anyone who doesn't understand making claims should be accompanied with evidence can't contribute in a meaningful way.

Do you think Martha Hawes, Research Scientist, whose entire career is evidence-based research, would be offended at being asked to show her radiographs? Did she really even need to be asked to put them in her publications on her case? Would the thought even cross her mind NOT to include them in her publications?

Your comments on this point are well beyond bizarre.

Are conservative treatments a religion? Those are the only people who ever take offense at being asked to provide evidence. Don't conservative treatments claim to be science?

Is that the real reason conservative treatment patients have left? Being asked to show evidence for their claims?

Why do we still have surgery?

If cut do we not bleed?

Hello?

hdugger
05-24-2013, 07:20 PM
For Marie, Rohrer, Jess and anyone else who feels that it's unkind to talk about Pooka's posting patterns in this forum, I give re-post this sentence, posted to a newcomer to the forum.

"Is there any reason to suggest radiographs are NOT necessary in helping people decide? Are you suggesting people are trying to hide something???"

I'm going to ask you explicitly for your approval.

Do you think that a parent, brand new to the forum, who has posted a very calm reasoned post about her daughter's treatment and (measured) success should have to prove (I'm going to shout here - cover your ears) THAT SHE IS NOT HIDING SOMETHING BY NOT POSTING HER XRAYS!!!

Yes/No. Thumbs up, thumbs down. You are either fighting for Pooka's right to make this demand, or you are not.

Pooka1
05-24-2013, 07:26 PM
"Is there any reason to suggest radiographs are NOT necessary in helping people decide? Are you suggesting people are trying to hide something???"

This question was clearly directed at Hdugger, not the parent, and Hdugger knows it.

And what is Hdugger's answer? Does she or does she NOT think people are hiding things so that it becomes inappropriate to ask for evidence?

Just to be clear, that last line I typed was directed at HDugger, NOT a random parent. Can't be too careful.

I don't think there is a single parent trying to hide a damn thing. I think there might be some play in what they are being told by alternative treatment providers though. There is even some play in what surgeons tell patients (viz Concerned Dad's realization that his daughter's radiographs were being read in an irrationally exuberant fashion down Montreal way).

hdugger
05-24-2013, 07:31 PM
Anyone who doesn't understand making claims should be accompanied with evidence can't contribute in a meaningful way.

Do you think Martha Hawes, Research Scientist, whose entire career is evidence-based research, would be offended at being asked to show her radiographs? Did she really even need to be asked to put them in her publications on her case? Would the thought even cross her mind NOT to include them in her publications?

Your comments on this point are well beyond bizarre.

Are conservative treatments a religion? Those are the only people who ever take offense at being asked to provide evidence. Don't conservative treatments claim to be science?

Is that the real reason conservative treatment patients have left? Being asked to show evidence for their claims?

Why do we still have surgery?

If cut do we not bleed?

Hello?

I'm just going to let that float in the air for a second.

I'm not even going to try to untangle all of the threads. My head is spinning.

Published report = first post by parent on forum.

Something about religion. Not sure why it's there.

Demanding an xray before parent is allowed to post = normal behavior.

Not wanting to provide an xray in order to be able to post = not sure. Religion? Lack of scientific thinking? No, not sure.

Question about why we still have surgery. Not sure what that means.

Cutting bleeding.

A greeting.

No, can't make sense of it. All spinning so fast.

Pooka1
05-24-2013, 07:39 PM
Well I am still in shock from the bizarrality of your claim that asking someone who is making a claim to show evidence is ever inappropriate. If my point was unclear then I apologize but I was typing and trying to hold the pieces of my head together lest they fly apart.

Are conservative treatments a religion and therefore they must take offense at having to show proof or are they a science wherein their sole role and goal is to show proof to make their case?

Which is it?

Thanks.

Pooka1
05-24-2013, 07:41 PM
Do people paying thousands of dollars to alternative treatment purveyors think they are buying science or religion?

I should say it is not really the parent making the claim of a reduced curve. It is CLEAR. The parent is innocently repeating it.

hdugger
05-24-2013, 07:57 PM
I have no idea what this has to do with science and religion, but I'm just going to make a list of the emotionally-charged words and phrases, and then I'll get to my response:

bizarrality
Are conservative treatments a religion
take offense at having to show proof

Again, not sure what all of that has to do with anything.

My response to what I think you're asking, after I get past all that.

No, I do not believe any parent on this forum has an *obligation* to *prove to you* any of their results. People come on here to talk about their kids or themselves. They're looking for support, or information, of just someone who might understand what they're going through. It's not science, religion, or whatever all of that stuff was in your first post. It's just someone who wants to talk about their experience with scoliosis.

Either they are welcomed into the forum in the same way that everyone else is. Either we make a place for them in exactly the same way we make a place for everyone else. Or someone has to explain to me why it is right and proper that we do not. Someone has to explain to me why some mother coming to this forum gets the most unfriendly greeting I've seen in months just because *your* curiosity is not satisfied.

Pooka1
05-24-2013, 08:04 PM
No, I do not believe any parent on this forum has an *obligation* to *prove to you* any of their results.

Nor do I. At least we agree on that.

But of course that wasn't the question.

hdugger
05-24-2013, 08:08 PM
Then restate your question, because I didn't see anything else there. I responded to this "bizarrality of your claim that asking someone who is making a claim to show evidence is ever inappropriate"

Pooka1
05-24-2013, 08:10 PM
Then restate your question, because I didn't see anything else there.

The question was why isn't bizarrality a word when it is required for certain discussions?

hdugger
05-24-2013, 08:13 PM
Ah, a joke. So, just post when you want to restate the question again so that I can answer. I'm posting lightly, but I don't find any of this funny.

flerc
05-24-2013, 08:16 PM
I want to make it abundantly clear that I don't want anyone horning in on my "immoral" gig.



Yes, obviously you are doing something immoral here.. certainly it could not be something difficult to do for someone dishonest as you showed to be.

Pooka1
05-24-2013, 08:26 PM
Given that surgeons in certain northern cities can be irrationally exuberant in reading radiographs, I think neither of us would be shocked if curve measurements on radiographs from some alternative treatment purveyors were not necessarily quite so accurate. Here I could also reference Woggon's original paper on the method CLEAR uses.

Anyway. Given that, wouldn't you advocate that parents ALSO work with surgeons in reading radiographs?

And given that, wouldn't it be good if parent realized they need to be always working with a surgeon in case the alternative treatment wasn't quite working up to snuff or stopped working or the child realized they didn't want to do PT for the rest of their life and meanwhile the child might be missing other treatment windows or, worse, has to have a longer fusion, perhaps into the lumbar from the delay?

We are not surgeons and can't be giving out Cobb angle readings to each other. But some can eyeball differences. So instead of saying all that, I suggested she post the radiographs. You took offense and I cannot identify a single rational reason for your doing so. So I speculated on one. If that is the wrong one then what is the right one?

Pooka1
05-24-2013, 08:33 PM
I will throw myself on my sword about one thing... the parent is an innocent bystander in all this and I was not artful in making that clear (no pun intended). Obviously the issue is the validity of the Cob angle readings and any clams made about how long the results are supposed to last. The parent is reporting all this information accurately as told to her. That's not the issue.

jrnyc
05-24-2013, 08:44 PM
up pops the name calling again...
"immoral" "dishonest"
shoulda seen it coming...
here comes the repetition...one more time.

jess

hdugger
05-24-2013, 08:50 PM
We are not surgeons and can't be giving out Cobb angle readings to each other. But some can eyeball differences. So instead of saying all that, I suggested she post the radiographs. You took offense and I cannot identify a single rational reason for your doing so. So I speculated on one. If that is the wrong one then what is the right one?

I'm going to pull out the super-charged words again.

"You took offense"
"I cannot identify a single rational reason"

I'm not sure why these words belong in this discussion, so I just wanted to put them aside. Let's just say that I strongly disagreed with what you were doing, and you could not figure out why. I believe that's the non-super-charged way to say it.

In summary: You think that her Cobb reading might be wrong, for whatever reason, so you'd like to eyeball her xrays.

My question, again, is, what business is that of yours? Why must she subject herself to some other parent on the forum "eye-balling" her xrays. Is that the standard price of admission here?

So, I'll repeat what I said before, because I think that's it's a reasonable summary of my response to your position even as restated:

"Either they are welcomed into the forum in the same way that everyone else is. Either we make a place for them in exactly the same way we make a place for everyone else. Or someone has to explain to me why it is right and proper that we do not. Someone has to explain to me why some mother coming to this forum gets the most unfriendly greeting I've seen in months just because *your* curiosity is not satisfied."

mariaf
05-24-2013, 08:53 PM
I have not time for this. It seems I must to repeat always what I said before.

Flerc,

The last thing you posted to me was:

"Tell me first what part you don't understand and I'll try to say it in a better English."

So I repeated my questions asking for clarification on what I did not understand and now you say you have no time. So why did you ask me to tell you the part I did not understand if you had no time to explain?

mariaf
05-24-2013, 09:12 PM
I believe I remember the exchange. Sharon had asked yet another conservative treatment parent to post their xrays (was it Tom? was it Flerc?) and that person had *responded* by asking her if she could post hers.

But that's still not the point I'm trying to make

Patient after patients posts their happy results of surgery, and we congratulate them. The first patient I've seen in months from Clear posts their happy results and they are asked, without friendly greeting, without so much as a how-de-doo:

* (a second time) if their surgeon has measured it
* if they can post their xrays

as a *greeting*. As their first, "Hey, welcome to our forum"

Questions:

- Do you think that person will feel as welcomed, as safe, as at home as the surgery patient who has been roundly welcome and congratulated by everyone?
- Do you think that person will be as likely to come back, to post again, to give updates?

and, I guess,

- If you don't think they'll feel as welcome or be as likely to come back, does that bother you?

hdugger,

I understand what you are saying and believe that your heart is in the right place. So is mine. You may not believe it, but let me tell you a story that I've told here before to illustrate what I mean.

Several years ago a mom asked me what I had heard about Spinecor. I was honest and told her that she should do whatever she felt comfortable with, but just to have her eyes open and that:

(a) I had not seen it work (she asked me this specifically) on larger curves with a child her daughter's age (I believe her daughter was 12 or so with a high 30's curve);

(b) I would demand in brace x-rays (the doctor in Montreal had convinced her to only do out-of-brace x-rays);

(c) I would see a pediatric orthopedic surgeon at the same time just so he could monitor her daughter.

Long story short, she listened to the doctor in Montreal - which I can understand because she so wanted to believe he could keep her daughter from needing surgery. They only did out of brace x-rays for maybe two years. Then I got a call from this mom, crying hysterically, because they had finally done an out of brace x-ray and the curve was in the mid 50's and her daughter would now need fusion. She also told me other things that happened along the way that made her start to lose faith in this guy who was treating her daughter. (She had the chance for VBS back when the curve was between 35-40 degrees but opted for Spinecor instead and now she was kicking herself. I told her who knows if VBS would have prevented the need for fusion - maybe, maybe not - so please don't beat herself up, etc.).

My point is that I don't want to ever get a phone call like that again or hear that total misery in a parent's voice because they felt 'taken' by someone who made what they now felt were false claims. I'm not saying that's the case every time, but that is probably where my views come from.

It's probably also because I have worked at a law firm for almost 30 years and after a while that's how one's mind works!

mariaf
05-24-2013, 09:17 PM
I don't think there is a single parent trying to hide a damn thing. I think there might be some play in what they are being told by alternative treatment providers though. There is even some play in what surgeons tell patients (viz Concerned Dad's realization that his daughter's radiographs were being read in an irrationally exuberant fashion down Montreal way).

That is what I am trying to say. Maybe Sharon could have worded it differently, but I for one know her well enough to know she is not questioning the parent, but rather the provider. Some of us worry about folks being taken in by those promising the moon but with no proof or evidence to back it up (see my last post), to the point where - with some of these methods - you'd be hard-pressed to find any reputable pediatric orthopedic specialist that endorse it. And as sad as it is, there are those in every profession looking to make a buck off of someone's desperation. It's just a fact of life.

flerc
05-24-2013, 09:18 PM
Flerc,

The last thing you posted to me was:

"Tell me first what part you don't understand and I'll try to say it in a better English."

So I repeated my questions asking for clarification on what I did not understand and now you say you have no time. So why did you ask me to tell you the part I did not understand if you had no time to explain?

No, what I said is I must to use the time to do something productive in talking with you about this. You are forcing me to do that, you and all of you doing what are you doing (or supporting) here and if you don't understand, read all my previous posts or ask to your friends here.

mariaf
05-24-2013, 09:22 PM
No, what I said is I must to use the time to do something productive in talking with you about this. You are forcing me to do that, you and all of you doing what are you doing (or supporting) here and if you don't understand, read all my previous posts or ask to your friends here.

What I posted is EXACTLY what you said - I copied it straight from your post.

Never mind, I have no desire to argue, I just wanted an answer to the original question, which I obviously will never get.

Pooka1
05-24-2013, 09:25 PM
That is what I am trying to say. Maybe Sharon could have worded it differently, but I for one know her well enough to know she is not questioning the parent, but rather the provider. Some of us worry about folks being taken in by those promising the moon but with no proof or evidence to back it up (see my last post), to the point where - with some of these methods - you'd be hard-pressed to find any reputable pediatric orthopedic specialist that endorse it. And as sad as it is, there are those in every profession looking to make a buck off of someone's desperation. It's just a fact of life.

Yes I wish I wasn't quite so "terse" in that post.

It's a fine line to walk when potentially dashing a parent's hopes and, even worse, potentially exposing that all the hard work a child did might not be a long term solution.

But I thought it was worse to come out and say there is no evidence CLEAR has helped anyone avoid surgery. I think there is no easy way to say some things.

This child may continue the PT her whole life and avoid surgery. Or her curve might stop on its own. Or CLEAR might actually have helped. It's hard to predict the future in this game.

My concern is always what is the child being told by the treatment purveyors and will the child feel blindsided later in life if they do a bunch of PT and still need fusion? Honesty matters.

ETA: Maria's point about missing potentially critical non-fusion surgery treatment windows is also very important.

flerc
05-24-2013, 09:32 PM
What I posted is EXACTLY what you said - I copied it straight from your post.

Never mind, I have no desire to argue, I just wanted an answer to the original question, which I obviously will never get.

If you not understand what I said about my time in that post, ignore it and continue reading that post.

rohrer01
05-24-2013, 09:42 PM
What I posted is EXACTLY what you said - I copied it straight from your post.

Never mind, I have no desire to argue, I just wanted an answer to the original question, which I obviously will never get.

Maria,
I know how you feel. Flerc never answered my question, either. I noticed he referred you to what he said to me, which is basically what he said to you. My question was, "What is the Official Western Medicine that Flerc is speaking against?" He won't answer that one, so I'm guessing he won't answer yours either.

flerc
05-24-2013, 09:47 PM
Maria,
I know how you feel. Flerc never answered my question, either. I noticed he referred you to what he said to me, which is basically what he said to you. My question was, "What is the Official Western Medicine that Flerc is speaking against?" He won't answer that one, so I'm guessing he won't answer yours either.

Is not true, I referred you to a thread where I explained it as I'm doing now with her question.. and certainly is not me who should to be answering questions..

rohrer01
05-24-2013, 09:51 PM
For those of you dragging me into this Clear argument, DON'T. I don't read Clear threads. I once started one here because I looked at their website and it intrigued me a little and reminded me of some of the tortuous things I was put through as a kid. They make a convincing argument but I haven't seen the proof. Yet, I briefly thought about trying it...briefly. If a real evidence based study comes out in their favor, I'll read about Clear again. I wasted a lot of time as a kid being a human guinea pig for a D.O. who was promising to cure my scoliosis. He used scare tactics like "I wouldn't be able to have children" to convince my mom to let him work on me. In the end there was zero improvement and a lot of wasted time and money, not to mention the humiliation that I felt laying there left alone hooked to electrical stimulators for long periods of time while he saw other patients.

rohrer01
05-24-2013, 09:54 PM
Is not true, I referred you to a thread where I explained it as I'm doing now with her question.. and certainly is not me who should to be answering questions..

You never answered my question. If it's so hard to answer such a simple question, then do YOU even know the answer? I don't want to be referred to a thread. I want a simple, concise answer that I don't have to go digging around for.

Ask me anything you wish. I'm a pretty open book on this forum. But it had better pertain to scoliosis on some level.

flerc
05-24-2013, 10:05 PM
You never answered my question. If it's so hard to answer such a simple question, then do YOU even know the answer? I don't want to be referred to a thread. I want a simple, concise answer that I don't have to go digging around for.

Ask me anything you wish. I'm a pretty open book on this forum. But it had better pertain to scoliosis on some level.

Why I should to repeat every time what I said many times before? You have time for this, use your time looking for that answer there.

flerc
05-24-2013, 10:22 PM
If would be something to do with scoliosis, something that might help you with your health problem, although you (as all your accomplices) are forcing me to waste the time I have to talk about scoliosis in this stupid way, of course I would answer you in a more direct way.

rohrer01
05-24-2013, 10:23 PM
I'm calling your wife, Flerc.

It really is OK. Sometimes people just don't like you, or don't get you. You sort of have to let them. It's not the law that people have to see you as a good man fighting the good fight. Some people might just think you're flailing your arms like a mad man. People get to decide what they want to decide about you. We're not trying to discuss exercise, or some other conservative treatment. They're not disrupting our work. Let them decide not to like you, or me, or whoever. It's fine. That kind of stuff you just have to let go. If there's one thing I've learned on the internet, it's that some people don't think I'm nearly as nice as I think I am.

If you start arguing your reputation, you're going to find that even you start to think you're not as nice as you think you are (or, however you'd say that). If you start going tit-for-tat (good lord, what can you think I'm saying) you're going to start trading angry post for angry post, and then we're never going to get anywhere.

You can call out behavior, you can point out the things you want to change, but I'd really, really strongly recommend letting up on the "immoral", "accomplice" language. No matter what is said to you, you have to respond back *less* harshly. Otherwise, we create the ugliness we're trying to cure.

[Edit: Added quotes around "immoral" "accomplice"]

I couldn't have said that better myself. What happened to the old Flerc who used to engage in interesting ideas and theories based on body mechanics and biophysics? The bold, red statement made by Hdugger IS how many of us are seeing Flerc right now.

According to Flerc ANYONE on this forum that doesn't come forward and agree with him 100% is an accomplice. I haven't even been given enough to know what his position is since there are things that are said that he refuses to define. So I guess all of the "lurkers" who don't speak up are accomplices, too. Sorry guys, you have been implicated in "Flerc's war", and yes, folks he called it a war. I can repost his comment if he doesn't delete it first. This has nothing to do with scoliosis and everything to do with one man's thought process, of which I have yet to figure out. What happens when the war is won or lost? How does that affect anyone dealing with scoliosis? We will all still be dealing with it whether or not Flerc wins his war.

Here's Hdugger's response to Flerc's accusation of another forum member being a senior conspirator:

Hey!! As a person of a certain age, I tell you we are *not* going to start snipping at people about their age!!! I am looking up your wife's number *right* now.


I'm an idiot, and everything Susie*Bee has ever said is correct.

Thank you for that defense, Hdugger. Be careful that it doesn't make you a conspirator.

I do have a problem with your signature, however. I feel that it is rather condescending and demeaning to Susie*Bee. No one is ever 100% correct. She's just probably trying to stay out of the crossfire by now. I know I would be, but reading through this thread I see that my name has come up several times, totally unprovoked.

Flerc's response to the threat of having his wife called:



flerc



No please .. and of course I was not referring to the age.. it would not be a good bussines for me..

Is the wife not siding in Flerc's war? Don't they have the same daughter...WITH SCOLIOSIS?
What is this whole thread accomplishing? NOTHING
I'm done here. Say what you want.
I think the whole thing should be deleted.
I'm getting back into the business of interacting with other people who actually care about scoliosis treatments, not forming "parties" to go to war with each other. This whole thing is stupid (an idea NOT a person)!

hdugger
05-24-2013, 10:30 PM
Marie,

I understand the story - it breaks my heart every time I see someone who I thought had found a happy ending come back to this forum with a sad story. People sometimes make poor choices. Or they seem to be making the right choices, but it doesn't turn out right for them. You try to gently guide them, if you think they don't know something, but you can't save them. Or you just comfort them if all the best made plans go wrong.

But, I could tell the same story with a different ending. We had another parent on this forum who was considering VBS and did Spincor and another brace instead. And that child's curve reduced greatly. What if you'd talked that parent out of their choice? Of just thrown up barriers to their entering the forum because you didn't want anyone else to make the same choice? That would also be a sad story, but now it's sad *because* of your involvement, not in spite of it. Now you've managed to put that child in a worse position, even though you were just trying to help.

Scoliosis just is not black and white. Someone can do all of the wrong things, in your opinion, and turn out better. Or they can do all the right things, in your opinion, and turn out worse. I know you're all well-meaning, but you simply cannot know that what you're doing is going to help, and you are not the person who is ultimately going to live with the consequences.

So, again, why is it OK to drive people out of the forum - people pursuing all manner of conservative treatments are leaving, and they are leaving because of how they're treated on this forum - why is it OK to drive them out of the forum because you are certain about an outcome which you can not possibly be certain of.

hdugger
05-24-2013, 10:44 PM
OK, Flerc. I gave myself a week to wait for a response, and that week is up.

I'll leave my breadcrumbs this time.

hdugger
05-25-2013, 12:07 AM
Reposting with clarification edits




.

.

.

Wow. I am taking that an an emphatic thumbs up to my previous question. Yes, you think that it's OK to ask certain posters to provide their xrays on entry to the forum, and no, you don't feel uncomfortable about that keeping a whole big group of posters, myself included, from feeling that this is a place where we can post. Noted.

Flerc is right. He is fighting the good fight. I was only talking to him about whether he was making the best presentation.

hdugger
05-25-2013, 12:11 AM
OK, edited my last post to make it clearer. Rapture calls. Very very best to you and yours.

hdugger
05-25-2013, 01:22 AM
adding another post. I feel like columbo.

I joked with Flerc because he said his wife thought he was wasting too much time here. I told him I was going to call her, because I knew he was posting a lot.

Flerc, I'm so sorry to have mentioned your wife in any way. I thought I was making an obvious jest about you posting too much. Please accept my apologies. It didn't even occur to me that someone would try to use that jest against you.

I will state it clearly. I believe that Flerc is fighting the good fight. I am totally and completely in support of what he is trying to do. And, please, rohrer, show some decency about posting about people's family members as part of your fight against them.

Apparently, I am shouting on the way out.

Pooka1
05-25-2013, 06:50 AM
Flerc, I'm so sorry to have mentioned your wife in any way. I thought I was making an obvious jest about you posting too much.

I thought it was obvious and funny.

It's important to lighten up every now and then, even when dealing with a serious medical condition.

flerc
05-25-2013, 06:52 AM
adding another post. I feel like columbo.

I joked with Flerc because he said his wife thought he was wasting too much time here. I told him I was going to call her, because I knew he was posting a lot.

Flerc, I'm so sorry to have mentioned your wife in any way. I thought I was making an obvious jest about you posting too much. Please accept my apologies. It didn't even occur to me that someone would try to use that jest against you.

I will state it clearly. I believe that Flerc is fighting the good fight. I am totally and completely in support of what he is trying to do. And, please, rohrer, show some decency about posting about people's family members as part of your fight against them.

Apparently, I am shouting on the way out.

Hdugger, apologies of course are not necessary and certainly it was a very good jest, you made me laugh.. in this thread!
Of course is very very dificult to imagine what certain kind of people very different to us really may do, since we never would do what they can do. Do you know the fable of the Scorpion and the Frog?
See what happened, as we are learning all the time. Is good for us to know the nature of the kind of people we must to confront here.

mariaf
05-25-2013, 07:28 AM
Marie,

I understand the story - it breaks my heart every time I see someone who I thought had found a happy ending come back to this forum with a sad story. People sometimes make poor choices. Or they seem to be making the right choices, but it doesn't turn out right for them. You try to gently guide them, if you think they don't know something, but you can't save them. Or you just comfort them if all the best made plans go wrong.

But, I could tell the same story with a different ending. We had another parent on this forum who was considering VBS and did Spincor and another brace instead. And that child's curve reduced greatly. What if you'd talked that parent out of their choice? Of just thrown up barriers to their entering the forum because you didn't want anyone else to make the same choice? That would also be a sad story, but now it's sad *because* of your involvement, not in spite of it. Now you've managed to put that child in a worse position, even though you were just trying to help.

Scoliosis just is not black and white. Someone can do all of the wrong things, in your opinion, and turn out better. Or they can do all the right things, in your opinion, and turn out worse. I know you're all well-meaning, but you simply cannot know that what you're doing is going to help, and you are not the person who is ultimately going to live with the consequences.

So, again, why is it OK to drive people out of the forum - people pursuing all manner of conservative treatments are leaving, and they are leaving because of how they're treated on this forum - why is it OK to drive them out of the forum because you are certain about an outcome which you can not possibly be certain of.

hdugger,

Of course it is not OK to drive anyone out of the forum. That's one reason why the name calling on this thread should stop lest it does just that. I try to offer suggestions ("get out of brace x-rays" or "be sure you are seeing a pediatric orthopedic surgeon" etc.) to people, but I have never and would never tell anyone "oh, don't try that - you need to consider this method instead". But I also would not withhold information or experiences that I was aware of it they were relevant to the person's situation.

I think you and I (and everyone here for that matter) wants to help others - but we each see the "how" a bit differently.

I just try to caution people, when I feel it is appropriate, to be very diligent and careful.

Another thing that has always bothered me about CLEAR is that Dr. Clayton Stitzel made a request a few years ago to join the VBS forum. We politely declined because the forum is for parents only and they need to feel that they are only talking to other parents and not to anyone who could profit from them. I thought it was an odd request as did the other moderators. He tried to plead his case again in a second e-mail, but the only reason we could think of that he'd want to join would be to attract patients. So, while I wasn't convinced that CLEAR was making claims they could substantiate even before that, I was even more uncomfortable with CLEAR after that.

I guess all of our experiences shape our views in a slightly different way.

Pooka1
05-25-2013, 07:49 AM
If asking for evidence for claims drives people away then I don't see the problem.

If they have evidence then they will post it. They will WANT to post it. It won't be like pulling teeth. People being driven away is an imaginary problem in terms of mattering to patients and parents. No evidence of treatment efficacy is lost because the people going away seem to be doing so to avoid being asked for evidence. They may feel driven away if they don't want to be asked for evidence.

Again, I don't see the problem. People are free to discuss what they are doing. If they are trying something that has no known evidence of efficacy then they should be told that. As soon as they make claims of efficacy, the requests for evidence should start rolling in. Conservative and alternative methods aspire to be a science. They should want to prove their efficacy instead of it being pulling teeth. People objecting to this are not doing science. Martha Hawes obviously would never object to people asking to see her radiographs to back up her claims. And she certainly would never think to publish without radiographs. You could have invented the most effective PT treatment in the world but if you don't have radiographs proving it, people have to take the claim on faith. Maybe the inventors are satisfied with just helping people who happen to hear about the method and take a leap of faith when they could be helping many, many more people if they publish. Maybe just picking off select people to help is okay rather than trying to help more people.

They can come here to let people know and to recruit but once the claims of efficacy are made, then evidence is required.

Nobody should be driven away for stating a new treatment, admitting there is no evidence of efficacy yet, and offering to help people learn the method to see if it is effective. Nobody should be driven away for repeating what an alternative treatment purveyor told them about curve regression. That is not happening here. What is happening here is pressure to pony up evidence of efficacy claims that drive people away.

Losing people who don't agree evidence is required for claims is an imaginary problem. People may be leaving but that is no loss to the community. Science is the only game in town and will win because it works.

mariaf
05-25-2013, 08:17 AM
For those of you dragging me into this Clear argument, DON'T. I don't read Clear threads. I once started one here because I looked at their website and it intrigued me a little and reminded me of some of the tortuous things I was put through as a kid. They make a convincing argument but I haven't seen the proof. Yet, I briefly thought about trying it...briefly. If a real evidence based study comes out in their favor, I'll read about Clear again. I wasted a lot of time as a kid being a human guinea pig for a D.O. who was promising to cure my scoliosis. He used scare tactics like "I wouldn't be able to have children" to convince my mom to let him work on me. In the end there was zero improvement and a lot of wasted time and money, not to mention the humiliation that I felt laying there left alone hooked to electrical stimulators for long periods of time while he saw other patients.

That also bothered me very much in the prior post. It seems that CLEAR used scare tactics (as I can only assume they were the ones who gave the parent all that info about what can go wrong during surgery, etc. and stated that we haven't improved surgery since the days of the Harrington rod - which of course is utter hogwash.)

mariaf
05-25-2013, 08:22 AM
I'm done here. Say what you want.
I think the whole thing should be deleted.
I'm getting back into the business of interacting with other people who actually care about scoliosis treatments, not forming "parties" to go to war with each other. This whole thing is stupid (an idea NOT a person)!

Well said.

And if any of us are afraid of driving people out of the forum, then we should be admonishing those doing the name calling and talking about people rather than ideas.

If new parents/patients want that sort of drama, I'm sure they can find a good soap opera on TV. This is supposed to be a scoliosis forum.

mariaf
05-25-2013, 08:24 AM
I joked with Flerc because he said his wife thought he was wasting too much time here. I told him I was going to call her, because I knew he was posting a lot.

And yet with all the time he spends here posting, whenever Rohrer or I ask him to clarify something or answer a question, he says "I don't have time". I'm sorry, but that doesn't fly.

Those sort of things and all the name calling is causing him to lose credibility.

mariaf
05-25-2013, 08:33 AM
I know you're all well-meaning, but you simply cannot know that what you're doing is going to help, and you are not the person who is ultimately going to live with the consequences.

Hdugger,

I think we are getting closer to understanding each other's views. I get what you are saying and I would NEVER claim to know the outcome of anything or tell anyone what to do. However, as I mentioned previously, if I know something and withhold that information, is that no worse?

Let me make it clear, when I speak to parents I NEVER advise them. I share things I know, my experiences and that of others, refer them to articles or to other parents who may have the most similar situations to theirs, etc. and then tell them to do all their homework, get a few opinions from those most highly regarded in treating children with scoliosis - and that they know their child better than anyone and will know what treatment best fits that child's needs after doing all this research. It's the advice I would give myself.

I am not FOR or AGAINST any treatment. Many here would probably think I'm a fan of VBS; and for certain patients, I think it is the best choice. For many, it isn't. And when a parent contacts me for info on VBS, I give them all the info - the good and bad. When I say, the "bad" I mean that I remind them it has only been around for a decade, that there are certain types of curves it has been effective on more than others (so to consider their child's situation), etc. - and then to talk to one (or preferably more) doctors who have been using this technique the longest and then evaluate everything.

How is that bad?

Susie*Bee
05-25-2013, 10:14 AM
A few small interjections-- I was gone yesterday so I missed a lot. (not a bad thing!) I see a lot of interesting dialogue going on where people are explaining, very well, what their foundation for their posts have been. I think (as in, my opinion) this is excellent. Sometimes people are not equipped to (let's say) be of the ambassador type who could genially question someone or judge time-wise when a subject would best be brought up for discussion. This doesn't mean it is not pertinent.

The problems with the written word versus the spoken word are many faceted. One-- you can read "tone" where none existed. You can think someone is "SHOUTING" or derisive when they are not. Or that there are put-downs when they are not intended at all. This is so unfortunate. Another problem exists because you cannot have a didactic (back and forth) conversation that would alleviate most of these one-sided monologues that are then pounced upon by another monologue. It would be so much easier to have one person make a simple statement and have its opponent immediately respond. In that case, I don't think we would have these huge ANGRY posts. I think we would have discussions. But none of that is possible with the written word.

Instead, we need to learn to use the written word to the best ability that we can-- trying to keep "tone" out of it (not reading "tone" into it as we read), trying to put ourselves in others' shoes and see what they are trying to say-- even if we may disagree, and accept that they may have a valid point for their own situation. If we know they may be being led astray, by all means, it is our duty to point that out, but then let them choose what to do with their child once they have that knowledge. It is THEIR child, and ultimately, THEIR decision on what course to take. We do not need to badger or belittle decisions that are clearly theirs to make.

I have appreciated hearing my name mentioned these past few days. :) Brings back some of the old days. I think I will PROBABLY let this rest for awhile now, but I think many of you are working harder at meeting mid-way and understanding each other. (Through nothing I have said, I will be quick to admit!) Keep up the good work of trying to understand that we are all different; all unique-- so we go about our scoli journeys in different ways. Our brains don't work the same way. Heaven forbid if they were the same (sorry Pooka!) but what a dreary existence it would be if they were. Exploration, in whatever mode, is the freedom we have. Don't let anyone take that from us. Not in our thoughts, not in our hopes, not in the way we search for cures or solutions to scoliosis in ourselves or our loved ones. Let's agree to disagree and get on with working against scoliosis and not against each other. Your friend and scoli sis, Susie

Susie*Bee
05-25-2013, 10:30 AM
Your PM box is full! (smile)

Pooka1
05-25-2013, 10:36 AM
Your PM box is full! (smile)

I'll empty it.

flerc
05-25-2013, 11:23 AM
And yet with all the time he spends here posting, whenever Rohrer or I ask him to clarify something or answer a question, he says "I don't have time". I'm sorry, but that doesn't fly.

Those sort of things and all the name calling is causing him to lose credibility.

If it would be true it would only would be true for people like you.. nothing to regret of course, I would not be so stupid to be part of her wear game against me as it seems it was what she did here. . Did you see how many posts I wasted trying to explain her what I was doing in this thread? I said her to look the obvious answer she is saying I denied to answer into the thread I quoted her.
I don't have to be friendly with someone doing what she does. The same you do and I answer you in the same way (quoting posts) So stop your accusations against me or prove what you say, showing I did not answer what you asked in the posts I quoted!. As I proved all what I said about you and the rest of the Pooka1's accomplices. You say 'accomplice' is a name calling. Do you prefer I refer to you and yours friends as ' people supporting in a too much direct way an immoral work'? Let me know.

And of course if someone understand what I said and you say you not understand, is your problem. Ask to people belonging to the same camp I belong to answer your questions. If they also not understand I explain to them, I have nothing to talk with some one using coward name calling against me instead of direct ones and without showing the proofs . You are 'suggesting' I'm coward or dishonest or something like that (use that words, not be coward!) because not responding to you and your accomplice (let me know if you prefer the other sentence) in the way you wants. I'm not coward, I use the word denoting what I want to express.
I will open another thread denoncing all what you are doing here if you continue accusing me without proofs. Surely would be the best. Maybe you are jealous. Who know what people of your camp may feel.

Pooka1
05-25-2013, 11:33 AM
Flerc, please stop bothering other people.

I assure you I work alone. Nobody is associated with my posts unless THEY state that. And that is only post by post. Nobody agrees with everything I write. I don't even agree with everything I write.

flerc
05-25-2013, 11:56 AM
Flerc, please stop bothering other people.

I assure you I work alone. Nobody is associated with my posts unless THEY state that. And that is only post by post.
Post by post.. curiously all defending you.
You say I'm bothering that people but you not recognize what you are doing with people here since so many years ago! It has not the less coherence.



Nobody agrees with everything I write. I don't even agree with everything I write.

It would be great to see a proof about this, specially if it is directly related with what I'm saying about you. Certainly if it would happen this war, would have not more any sense.

Pooka1
05-25-2013, 12:04 PM
Certainly if it would happen this war, would have not more any sense.

What war? The war on science?

Susie*Bee
05-25-2013, 12:47 PM
For all my dear scoli brothers and sisters -- that includes ALL of you. Once I read an older children's book that I loved. It is Walk Two Moons by Sharon Creech. It was a Newbery Award winner awhile back-- meaning that it was selected as the best children's fiction book of the year. The title of the book was taken from the old Indian (yes, no longer politically correct) saying: you cannot understand another until you have walked in his moccasins for two moons. ( two moon cycles) That is the crux of our problem. None of us has the ability to feel the emotions, the trauma, the trials, the challenges that each one of us are going through-- how we are trying to deal with the scoliosis that is in our families. Sometimes that is just one of the many huge events that occur-- house fires, insurance problems, marital problems, spouse job or medical problems, moving problems, behavioral or drug problems with other children. We have our journeys before us. Let us walk our walks, let us think about each other walking their walks, and try to give each other support as needed. We don't need to be adding more and more baggage to already difficult lives. We need to be a support group...

BTW-- I liked that book well enough at the time to give a copy to each of my children. And I also really liked Chasing Redbird by that same author, as well as many others. (smile) But then, I love books! Always have, always will. There's a plethora of wonderful books out there-- just like doors waiting to be opened, full of adventures and knowledge just waiting for you to open that cover. Hear them whispering to you? "Open me!" (Yes, I was one of those kids in school who got in big trouble for trying to read while the teacher was teaching, sliding my book out just a tad, or raising my desk up, just a tad... and at home, reading with my flashlight under the covers until I figured out it was much easier to breathe if you just rolled up a towel and stuck it under the door and left the lights on... then they couldn't tell........ tee hee. Should I clean house or read? Such a predicament. Ha ha!

flerc
05-25-2013, 01:00 PM
It would be great to see a proof about this, specially if it is directly related with what I'm saying about you. Certainly if it would happen this war, would have not more any sense.

Sorry for seem to be igenuo believing something like that might happen some day. I'm not.

flerc
05-25-2013, 01:52 PM
OK, Flerc. I gave myself a week to wait for a response, and that week is up.


Hdugger, of course it will not surprise me in any way if you finally recive a response.
Mainly if it consist in ban people of our camp, or implementing of some rules as all were taken here, only favoring people of the other camp. Surely it would be something as banning name calling.. why I could say immoral, dishonest..? if I'm still here.. well, at least I know how to say accomplice in other way!

flerc
05-25-2013, 05:14 PM
Let us walk our walks, let us think about each other walking their walks, and try to give each other support as needed. We don't need to be adding more and more baggage to already difficult lives. We need to be a support group...

Susie, it would be beautiful to see what you said here, but unfortunately Pooka1 seems to has a real need to do do her immoral work here and since some members also seems to have the need to support her, this site is what it is.
Take care.

jrnyc
05-25-2013, 05:35 PM
thank you, Susie Bee
great post

jess

Susie*Bee
05-25-2013, 06:30 PM
Thanks, Jess.

Flerc--Why don't we wipe the slate clean and give each other a chance. People can change. Someone has to make the first move to try to listen and be courteous. It can happen if we work at it. We need to show respect to everyone, even if we don't agree with them. I have discovered with the children I work with, that if you don't respect them because of their behaviors, they will act up more. If you turn it around and encourage them even though they are challenging, you can get their behavior to improve. You set the tone for the situation. If you are challenging Pooka and calling her names, then she will be defensive, and her only choice is to then attack back. That is what has been going on instead of working together. That is why we need to stop, see that we are on the same side, fighting against scoliosis, and need to support each other and not fight each other. We are fighting the wrong enemy. The enemy is scoliosis, not the people on the forum. I know you have a language barrier, so I hope I am explaining this clearly enough. We can do this if we try and if we work. It won't be easy. We can disagree, but we can do it courteously-- in a nice way. There are no bad guys and good guys. OK?

LindaRacine
05-25-2013, 08:12 PM
I honestly don't know how anyone has the stomach to read this thread. Since there appears to be no value in the discussion, I'm closing it down.