Attacking the President & CEO

[mamamax]

The Truth

I will not undertake an extended argument with pooka about evidence and facts, because with her any discussion is futile. The reader of all these posts will note that she has prejudged the entire non-surgical section as "Emotional Support/Other," another attempt to disparage everything but the scalpel. With that prejudgment, she barges in and disrupts non-surgical area discussions, attempting to enforce her prejudgment. (But is not the entire forum here for emotional support, as well as information? Scoliosis can be very traumatic.)

Pooka pontificates about science as though she were Einstein. But she does not write with the precision of a top scientist. Compare with Betty14’s posts when she describes muscle or brace function. That is scientific authority, and I recognize it and suspect others do, as well. For instance: http://www.scoliosis.org/forum/showt...?t=9000&page=7

Nobody needs to lecture me about evidence and facts. Pook and tx keep asking who I am. I am a PhD from a top-five research university, have held postdocs, published widely, and edit an academic journal. I’ve read a massive amount of published literature in all kinds of fields including several in biomedicine. Defining fact is not so simplistic as pooka and Linda imply. For one, today’s body of facts is tomorrow’s outdated paradigm: see Thomas Kuhn’s Structure of Scientific Revolutions. I think SOSORT knows about tomorrow, though anybody would concede the need for surgery in some cases.

Interestingly, though, in this discussion we are accumulating evidence and facts. Here’s a tentative tally of indisputable facts:

-- Several people have testified that they feel intimidated here, don’t post for fear of being attacked. I know other examples. This is a result absolutely contrary to the express wishes of the NSF president.

-- The problem originates with a very few people, chiefly txmarinemom and pooka, who exasperate, badger, intimidate a large contingent of vocal and silent members, even though they may sometimes be appreciated by others.

-- The result is a board that is partly dysfunctional, and has been so for over a year. Some of people, number unknown, have disappeared because of it.

-- The problem is serious enough that the very president of the NSF has been subjected to obnoxious challenges by the primary offenders. The moderator states that she is disinclined to intervene.

On the basis of these facts, any reasonable person would conclude that something needs to be done. More FACTS:

-- The only person aside from the president who can correct the problem is the moderator.

-- The moderator is doing nothing visible to correct the problem. In the post directly above she implies that the problem is only mine and that I should leave to solve it. It is not only my problem -- it affects dozens at least.

-- The moderator *has* intervened recently in cases where she regards Ballet Mom or mamamax – both of them pursuing conservative treatment -- as stepping over the line. This gives the impression of favoritism.

-- The moderator has publicly defined her job as she sees it:

--This job definition is found nowhere in the NSF forum guidelines. http://www.scoliosis.org/forum.php The guidelines imply instead that the individual should use his/her own judgment to separate wheat from chaff. Nowhere do the guidelines declare that this forum will permit only proven facts to be stated in a post.

CONCLUSIONS
-- A focus on their concept of "proven facts" or "evidence" and strong support for surgeons and surgery appears to be an obsession with pooka and the moderator. They summarily dismiss any possibility that exercise therapy could work, which is the party line of the SRS, an organization primarily focused on surgery.

-- I conclude that the moderator is either unconcerned about maintaining the atmosphere specifically defined by the NSF and its president, or she is passively or actively encouraging her allies to pester members in the non-surgical section because it advances an agenda of disparaging conservative treatments. If that seems unfair, please prove my conclusions untrue by doing something constructive about the underlying problem, not just shooing complainers away.

-- I finally conclude that probably nothing will improve until we have another moderator to supplement or replace the current moderator, because Linda’s concept of the job is not the same as the NSF guidelines’ concept of the job, evidenced by both performance history and her own public statements.

Writer - it could not have been said better. Thank you for being our advocate. Your observations of what really goes on here, in our house divided - is both accurate and truthful. Not everyone will want to face the truth - and they will offer grandstanded if not bombastic protest of it. While those who have been abusive to others may apologize, like most who follow an abusive pattern, the actions will resurface and repeat (regardless of how the victim responds). I fear the natural law of history repeating itself may not find immunity in this forum.

And for those who do not like abusive behavior - they will be offered directions to the exit sign or offered an iconic triangle to click. I have clicked that triangle - and been dubbed by the moderator - a complainer.

How interesting and somewhat sad, given the purpose of this forum - which was designed with a dual purpose to provide support for patients and families in the decisions they make towards treatments of their choice (surgical or non-surgical). Choice being, the operative word. As long as we have "moderation" that is biased towards only one treatment, those who choose another will have a difficult time sharing information among themselves. I will not go into the endless list of examples - those who try to participate in the non surgical forum, know them well.

There are no such abusive examples in the surgical forums - and that makes it obvious that the forum is one sided (through moderation's leadership). At this point, I imagine the moderator is about to offer me directions to the exit sign. I respectfully decline in the perhaps misguided hopes of once again requesting that the non surgical forum be given the same freedom as the surgical forum so that both may enjoy the freedom to exchange information among themselves regarding their choice of treatment. This is what the forum was designed to do - and I do not believe that it is too much to expect.

~ yours truly, the only active adult Spinecor patient to remain amid the hostility.

[mamamax]

This is the second time I'm writing this, as it appears that my post did not actually post....argh....so here's another version of what I tried to post earlier.

--------------------------------------------------------------------------

I cannot change anyone. I can only change the way I respond. I could never "win" an arguement with a person who is hostile, arrogant, and has a rabid desire to be right all the time.

In fact, trying to argue with such a person literally feeds his or her need to be superior. Continuing to respond to that person actually gives the aggressor permission to continue. It is, in fact, positive reinforcement.

I suggest a technique that I, and perhaps you, have found useful when training dogs or children:

Reward good behaviour (informative, thoughtful posts or constructive critique delivered with respect) with "thank you for your input, you helped me understand that better"

Do not reward bad behaviour (insults to your intelligence or beliefs, suggestions that you don't want to know facts) with a response at all. Or reply once alone to inform the person that you will not be drawn into a fruitless arguement.

If you do not reply, the aggressor will have no one to talk to, and will lose his or her power. (and really, is there not more to life than being the alpha dog of a web forum?). Take back your power folks, by changing your strategies to get the outcome - a useful non-surgical forum - you desire.

Betty ~

Agree with Writer, this is excellent advice. Reminds me of a recent campaign slogan - yes we can :-) with The Audacity of Hope - let us give this a try.

[LindaRacine]

I think we have to remember that Linda is a volunteer. Even if she was paid, it's hard to imagine it would ever be enough to deal with this forum.

Folks should step up to the plate and take control of what they read instead of trying to take control of what others write. If everyone did that then we wouldn't need a moderator.

Paid? LOL!

[betty14]

Betty ~

Agree with Writer, this is excellent advice. Reminds me of a recent campaign slogan - yes we can :-) with The Audacity of Hope - let us give this a try.

Thanks for the support. I hope that people will also FOLLOW the advice, which won't be easy!

[mamamax]

Thanks for the support. I hope that people will also FOLLOW the advice, which won't be easy!

You are welcome. You have been a delightful and informative addition here Betty.

You know that old adage of course - you can lead a horse to water but ...

I for one am thirsty and will drink!

Best2U!

[LindaRacine]

I just looked at a bunch of threads to come up with some examples of my not being biased:

http://www.scoliosis.org/forum/showp...12&postcount=3
http://www.scoliosis.org/forum/showp...38&postcount=2
http://www.scoliosis.org/forum/showp...68&postcount=2
http://www.scoliosis.org/forum/showp...67&postcount=2
http://www.scoliosis.org/forum/showp...90&postcount=2
http://www.scoliosis.org/forum/showp...79&postcount=3
http://www.scoliosis.org/forum/showp...03&postcount=2
http://www.scoliosis.org/forum/showp...85&postcount=1
http://www.scoliosis.org/forum/showp...30&postcount=7
http://www.scoliosis.org/forum/showthread.php?t=8080
http://www.scoliosis.org/forum/showp...63&postcount=6
http://www.scoliosis.org/forum/showp...3&postcount=19

I have ALWAYS said that alternative treatments may be helpful. The only problem I have with alternatives, is when people make false claims. I would LOVE to find out that an alternative treatment can keep surgical candidates from having surgery. Believe me when I say that I'd have the same problem if a surgeon came here and started making false claims.

And, here's some evidence of my trying to give an alternative practitioner a platform to spread the word. This thread contains a conversation I had with a Clear Treatment chiropractor. I convinced her to treat a patient for free if there was no long-term improvement from treatment. We found the patient, and I got a surgeon to agree to follow the patient during treatment. After it was all set up, the chiropractor stopped communicating with me.

http://www.scoliosis.org/forum/showthread.php?t=3452

Edit: Darn, that isn't the thread. If anyone can find the proper thread, please post a link. However, while I was rereading that thread, I noticed this post:

http://www.scoliosis.org/forum/showp...9&postcount=28

[mamamax]

Thanks for the support. I hope that people will also FOLLOW the advice, which won't be easy!

You are right Betty .. It won't be easy. Meant to say that earlier and forgot.

[Pooka1]

I just looked at a bunch of threads to come up with some examples of my not being biased:

http://www.scoliosis.org/forum/showp...12&postcount=3
http://www.scoliosis.org/forum/showp...38&postcount=2
http://www.scoliosis.org/forum/showp...68&postcount=2
http://www.scoliosis.org/forum/showp...67&postcount=2
http://www.scoliosis.org/forum/showp...90&postcount=2
http://www.scoliosis.org/forum/showp...79&postcount=3
http://www.scoliosis.org/forum/showp...03&postcount=2
http://www.scoliosis.org/forum/showp...85&postcount=1
http://www.scoliosis.org/forum/showp...30&postcount=7
http://www.scoliosis.org/forum/showthread.php?t=8080
http://www.scoliosis.org/forum/showp...63&postcount=6
http://www.scoliosis.org/forum/showp...3&postcount=19

I have ALWAYS said that alternative treatments may be helpful. The only problem I have with alternatives, is when people make false claims. I would LOVE to find out that an alternative treatment can keep surgical candidates from having surgery. Believe me when I say that I'd have the same problem if a surgeon came here and started making false claims.

The only way I can understand the claims of bias against you is your insistence on not letting anyone use the forum to make a false, misleading, or unsupported claim. Folks seem to interpret that goal as being against alternative treatments per se when clearly you are not against alternative treatments for pain and such as shown by that subset of your posts.

If that is wrong then I have no idea why some folks think you are biased. It is correct to be biased against false, misleading, and unsupported medical claims. It's why we need Quackwatch, which, I assume some here think is completely unnecessary.

And, here's some evidence of my trying to give an alternative practitioner a platform to spread the word. This thread contains a conversation I had with a Clear Treatment chiropractor. I convinced her to treat a patient for free if there was no long-term improvement from treatment. We found the patient, and I got a surgeon to agree to follow the patient during treatment. After it was all set up, the chiropractor stopped communicating with me.

http://www.scoliosis.org/forum/showthread.php?t=3452

Probably too caught up in a vicious cycle of asymmetric loading of subluxations.

[Pooka1]

Paid? LOL!

No I know you aren't paid.

I just wish folks/adults wouldn't constantly rely on you to be their net nanny when you are doing this in your free time. It's not like it seems enjoyable.

[betty14]

I have ALWAYS said that alternative treatments may be helpful. The only problem I have with alternatives, is when people make false claims. I would LOVE to find out that an alternative treatment can keep surgical candidates from having surgery.

Hi Linda:

I do believe that you are sincere in what you say above.

I'm sure you know already that a lot of people posting on this part of the forum will likely never be surgical candidates (like myself - curves not "bad enough" to qualify). We would like to talk about what we're doing to treat our conditions and improve our quality of life.

There is also a percentage of people who would want to avoid surgery, and are willing to put some time, effort and money into trying, and who are intelligent enough to thoroughly look into their options.

Many other people are told they are just shy of the threshold for surgery; they should "wait and see". They also deserve a place to look for answers.

Most of these people ALREADY KNOW that the evidence base for certain treatments is not conclusive, and are not gullible enough to fall for just anything. Yet sometimes they are treated as if they are very stupid people indeed, by a small number of people.

I will encourage everyone to please not "take the bait" the next time you find yourself recieving a nasty reply to one of your posts.

Well, that's my last post on this thread. Anyone like to join me?

B.

[Pooka1]

Sharon, et. al...

Discussion of beliefs is now banned, and all posts that discuss the topic have been/will be removed if found.

--Linda

ALL posts. Very good. Not relevant.

[LindaRacine]

Hi Linda:

I do believe that you are sincere in what you say above.

I'm sure you know already that a lot of people posting on this part of the forum will likely never be surgical candidates (like myself - curves not "bad enough" to qualify). We would like to talk about what we're doing to treat our conditions and improve our quality of life.

There is also a percentage of people who would want to avoid surgery, and are willing to put some time, effort and money into trying, and who are intelligent enough to thoroughly look into their options.

Many other people are told they are just shy of the threshold for surgery; they should "wait and see". They also deserve a place to look for answers.


B.

Hi Betty...

Absolutely! And, I've always been a proponent of alternative treatments for non-surgical curves in adults. I went to a chiropractor 3 times a week for a year before even seeing a surgeon. During that time, I also tried physical therapy and acupuncture. I've said many times that I wished I had found my [current] physical therapist before my surgery instead of afterward. If I could have avoided the extreme pain I had, I would not have had surgery when I did.

In non-skeletally mature individuals who don't fall into the treatment window (25 degrees or more), I'm fine with alternative treatments, as long as I don't have to pay for them. Just as surgeons have to prove the effectiveness of procedures in order to be reimbursed, alternative practitioners should have to prove the effectiveness of their treatments. If they can't be proved, than it should be up to the individual to pay for them.

Regards,
Linda

[MissEmmyF]

I have ALWAYS said that alternative treatments may be helpful. The only problem I have with alternatives, is when people make false claims. I would LOVE to find out that an alternative treatment can keep surgical candidates from having surgery.

Like Betty said, I also believe this to be true Linda. My whole issue is that I don't think many people on here are making false claims about being able to permanently reduce a curve by non surgical methods, etc. I think most people on here are pretty much on the same page and realistic about whichever non surgical option they may choose. So, even though this seems to be the case to me, there are STILL repeatedly heated debates...for no real reason.

[scooter950]

praying for peace!

Interestingly, though, in this discussion we are accumulating evidence and facts. Here’s a tentative tally of indisputable facts:

-- Several people have testified that they feel intimidated here, don’t post for fear of being attacked. I know other examples. This is a result absolutely contrary to the express wishes of the NSF president.

-- The problem originates with a very few people, chiefly txmarinemom and pooka, who exasperate, badger, intimidate a large contingent of vocal and silent members, even though they may sometimes be appreciated by others.

-- The result is a board that is partly dysfunctional, and has been so for over a year. Some of people, number unknown, have disappeared because of it.

-- The problem is serious enough that the very president of the NSF has been subjected to obnoxious challenges by the primary offenders. The moderator states that she is disinclined to intervene.

Hello to all, I am writing to add my voice to the numbers of members who no longer post/ no longer read this forum on a daily basis, like I used to. I was so excited when I found this forum, to finally meet other people who suffer from pain and disabilty, whose lives have spiraled inward to a rest and work cycle that severly limited social interaction/ or any serious activities.

I have become somewhat of a recluse, because of the pain.

But I totally agree with Writer, there have been SO MANY posts that are rude, that lack any charity or kindness, posts that attack the person- not the idea; I cringe when I read these posts and I shrink back into my lurker status. Why, you ask? why don't I just reply? #1- the main reason: I don't have the time or the energy. I don't even have time or energy to fix my hair - let alone engage in a heated and convoluted online argument with hostile posters!!!

When I am in such pain I can no longer walk or stand, I try to rest and grab the laptop... only to find beligerence and personal criticisms on this forum.

I also have formed the opinion that Linda Racine plays favorites- that certain members jump at any opportunity to belittle certain opinions/ beliefs about scoliosis. And as for the banning of religion...?!!?! I am incredulous! can I no longer say "I will pray for you" when someone is having surgery, or having a rough recovery? Let's be adults! If you don't want to read my posts, then skip it. I post seldom enough, no hardship for missing any! But why the ban ?

<sigh> Is it so difficult to be kind? we are all in pain, we are all deformed, and looking for answers. Can't we support one another instead of tearing each other down? praying for peace, jamie

[LindaRacine]

You can ignore my posts, or the posts of anyone else, by adding that individual to your ignore list.

http://www.scoliosis.org/forum/profi...?do=ignorelist