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

[rohrer01]

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]

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]

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]

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]

OK, edited my last post to make it clearer. Rapture calls. Very very best to you and yours.

[hdugger]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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