Spinecor Brace for Adults

[Pooka1]

You might try writing to the foundation itself - NSF@scoliosis.org. Linda isn't a formal representative, I don't think. She just moderates the forum.

My sense is that the anti-non-surgery bent is purely social dynamics. I don't think it has anything to do with any deliberate attempt to guide the forum in a particular direction.

That doesn't make it any less striking or monolithic - it just means that it's not part of some master plan. It's just the way things happened to shake out, given the nature of the dominant participants.

So you are going to sit there and claim NONE of it is driven by evidence and that it is ALL driven by the random vagaries of the participants?

Some people are driven by evidence and intellectual honesty. That often goes unrecognized in a country like the US for obvious reasons.

I could care less who is supporting this forum. Ballet mom's CLAIM was that certain players, me included, are accepting payola to say X, Y, and Z.

I CLAIM you don't need to be a psychiatrist or a clinical psychologist to say that is a paranoid delusion.

Next.

[Pooka1]

jrnyc,

I don't have any proof, but let's try common sense...

Let's get the claims straight. Ballet Mom's claim is that I am accepting payola to say X, Y, and Z as opposed to a lay parent simply being acquainted with the state of the evidence (like all those wacky, "mind-controlling" surgeons at those 26 facilities). If that is true then why haven't I seen one thin dime of that money?

[Ballet Mom]

Anybody remember Esscurve? She was a Masters Student studying Corporate Communication with a focus on health care at Rutgers University. She has a blog called esscurve.blogspot.com. Her last post is very interesting and enlightening. I will post part of it here:

Tuesday, November 10, 2009
Social Media & Health Care Conference

Last Tuesday (Nov, 3, 2009) I attended a conference about “Social Media & Health Care” held here in New Brunswick, NJ. The participants were predominantly (not exclusively) employees from the Johnson & Johnson umbrella of companies but from various departments (marketing, communication, product development, legal, financial etc.). The conference was focused on how companies are engaging online, how they can do more and better in the future, and how they can take advantage of this new communication opportunity in “good taste”.

The speeches began with Ray Jordon, Corporate Vice President of Public Affairs and Corporate Communication at J&J who listed some vital statistics:

61 % of Americans search for health information online
60 % of those seek information from people like themselves (lay people) - not professionals
56 % of those that searched online changed their medical approach due to their research and
53 % of those that searched would ask their doctors about information they found online or would seek a second opinion.

He went on to discuss how this change in “corporate credibility” was an opportunity worth addressing. To help companies better understand the challenges when attempting to communicate to the masses on an individual level (he was referring to the fragmentation of users online) several guest speakers were brought to share their insight. Two of which are “Patient Bloggers”, meaning regular people that host their own blog (sometimes with a forum), that talks about living life with their condition.

Kerri Morrone Sparling, has Type 1 Diabetes and writes on SixUntilMe.com, and Jenni Prokopy has chronic pain (and a stream of other conditions) and writes on ChronicBabe.com.

Both expressed a desire for more credible medical sources to be available online. They were not opposed to the involvement of medical companies in online education; they simply stated that it “needs to be done the right way”.

Both bloggers had over 10,000 viewers monthly and complained that many of their readers use Google to search for information, although it has been proven that often the first search results are often not from medically reliable sources.

They both experienced companies getting involved in their blog the wrong way. If companies are simply there to tap into a consumer market, they will be quickly detected and removed from the site. According to them, the manner of speech and frequency of involvement are dead give-aways.

Their advice:For companies to properly get involved, they need to be honest. They should first contact the moderator, be transparent about the company their work for and their intentions on participating in the forum. They need to dedicate time on reading up on the history and getting to know the active members. Companies should participate in existent threads and share insight on many topics (not just the temporary scope of their business). The opportunities are there and welcomed! Creating a face and personality to a corporation is unquantifiable. Patients will better trust the brand and companies will better understand the needs of their customers.

You can read the rest of the post and her blog here:

http://esscurve.blogspot.com/2009/11...rence-nov.html

[Ballet Mom]

So you are going to sit there and claim NONE of it is driven by evidence and that it is ALL driven by the random vagaries of the participants?

Some people are driven by evidence and intellectual honesty. That often goes unrecognized in a country like the US for obvious reasons.

I could care less who is supporting this forum. Ballet mom's CLAIM was that certain players, me included, are accepting payola to say X, Y, and Z.

I CLAIM you don't need to be a psychiatrist or a clinical psychologist to say that is a paranoid delusion.

Next.

Perhaps you're working in a university...lots of fellow travelers there.

How do you know that the Braist study is finished? What's your inside source of info? Interesting that an uninterested lay person would have access to that information.

[Ballet Mom]

Let's get the claims straight. Ballet Mom's claim is that I am accepting payola to say X, Y, and Z as opposed to a lay parent simply being acquainted with the state of the evidence (like all those wacky, "mind-controlling" surgeons at those 26 facilities). If that is true then why haven't I seen one thin dime of that money?

I never said you accepted money. Paranoid much. You have too much fun spouting the party line, no doubt you do it for fun and excitement.

[hdugger]

So you are going to sit there and claim NONE of it is driven by evidence and that it is ALL driven by the random vagaries of the participants?

I spent several months *not* posting on this forum after I first discovered it because I was so put off by the fist fights in the non-surgical and research areas. I waded in because my son needed me to, but nothing short of that would have made me participate.

I'm no discussion forum neophyte - I evaluate these things for a living - and it takes alot to make me shy away. But the social dynamics were *so* off in those forums that I realized it would cost me some peace of mind to participate.

None of that unpleasant dynamic has anything to do with people presenting evidence or rationally discussing their various points of view. The exact same information could be interchanged more clearly and succinctly without the heat. It has everything to do with an unhealthy social dynamic that's taken root, and which everyone would benefit from having rooted out.

[LindaRacine]

Are you able to share with us who the main supporters of NSF are? Do you have that information? Is it publicly available somewhere?

I imagine that the information is available from public records, if one is inclined to look. As far as I know, there are no corporate sponsors who are implant manufacturers. The vast majority of donations come from private individuals.

[livingtwisted]

I spent several months *not* posting on this forum after I first discovered it because I was so put off by the fist fights in the non-surgical and research areas. I waded in because my son needed me to, but nothing short of that would have made me participate.

I'm no discussion forum neophyte - I evaluate these things for a living - and it takes alot to make me shy away. But the social dynamics were *so* off in those forums that I realized it would cost me some peace of mind to participate.

None of that unpleasant dynamic has anything to do with people presenting evidence or rationally discussing their various points of view. The exact same information could be interchanged more clearly and succinctly without the heat. It has everything to do with an unhealthy social dynamic that's taken root, and which everyone would benefit from having rooted out.

Great post! I'm afraid a lot people have not stayed for this very reason.

[livingtwisted]

I imagine that the information is available from public records, if one is inclined to look. As far as I know, there are no corporate sponsors who are implant manufacturers. The vast majority of donations come from private individuals.

Thank you.

[jrnyc]

Linda Racine was kind enough to answer me privately, and tell me what she just wrote here...that this forum is not supported by "medical device companies"...
i believe her...i trust her integrity, and the integrity of this forum....

i think it is unkind and overly suspicious to assume that "medical device companies" support this forum, just because some can just not believe that private folks, touched by scoli themselves, (or who have family members or friends touched by scoli)...would support this forum...
that is exactly what i believe...that those private folks are concerned enough to give their assistance and support

i do not believe there is lying going on...i think that is an insult to the integrity of those who work so hard for this forum!

that is my personal opinion...

jess

[Pooka1]

Great post! I'm afraid a lot people have not stayed for this very reason.

If evolution deniers don't stay on a biology forum is that a good thing or a bad thing?

If astrologers don't stay on an astronomy forum is that a good thing or a bad thing?

If faith healers don't stay on a medicine forum is that a good thing or a bad thing?

If Holocaust deniers don't stay on a history forum is that a good thing or a bad thing?

The people interested in evidence hopefully stay and that is what matters.

What you see here is a miniature of the larger problem out there of evidence versus faith as ways of knowing. What you see here is medicine versus folkmedicine. It is always the same problem. Can't get away from it. Look at the research section which has become a playground to state any random counterfactual material that pops into one's head. There is no means with which to tether it to reality.

You can either lay down and take it or apply conversational pressure for folks to start making sense.

[Ballet Mom]

If evolution deniers don't stay on a biology forum is that a good thing or a bad thing?

If astrologers don't stay on an astronomy forum is that a good thing or a bad thing?

If faith healers don't stay on a medicine forum is that a good thing or a bad thing?

If Holocaust deniers don't stay on a history forum is that a good thing or a bad thing?

The people interested in evidence hopefully stay and that is what matters.

What you see here is a miniature of the larger problem out there of evidence versus faith as ways of knowing. What you see here is medicine versus folkmedicine. It is always the same problem. Can't get away from it. Look at the research section which has become a playground to state any random counterfactual material that pops into one's head. There is no means with which to tether it to reality.

You can either lay down and take it or apply conversational pressure for folks to start making sense.

I'm sure it was much more fun and exciting in the old evil empire where you could just throw people who didn't agree with you in mental institutions or gulags. I hear it's rising again....they need you back there. Although I think it's more a mafia state than ideological, so you won't need to waste time with the long, drawn out demise of people you don't like.

[mariaf]

interesting. If anything, you might say this site was supported by the manufacturers of the spinecor brace. That's much closer to the truth, as far as i know, than saying that device manufacturers support the nsf.

Do you like the iscoliosis site, balletmom? I believe that site is 100% funded by a manufacturer.

Linda beat me to the punch. I've been away for a few days, but I could not believe it when I read the claims being made that surgical device manufacturers might be supporting this site when in fact the president of NSF has such close ties to Spinecor.

[Ballet Mom]

I imagine that the information is available from public records, if one is inclined to look. As far as I know, there are no corporate sponsors who are implant manufacturers. The vast majority of donations come from private individuals.

Do you know what percentage of those donations coming from private individuals are from orthopedic surgeons?

Just curious.

[hdugger]

What you see here is a miniature of the larger problem out there of evidence versus faith as ways of knowing. What you see here is medicine versus folkmedicine. It is always the same problem. Can't get away from it. Look at the research section which has become a playground to state any random counterfactual material that pops into one's head. There is no means with which to tether it to reality.

I'm fairly certain that I'm not a denier of any stripe, and I found those sections almost impossible to participate in. The difficultly was not because of an excess of facts, but because of an excess of personal attacks.

Specifically, the conversations mostly stopped being about the issue at hand, and instead became a conversation about whether or not the participants had the skill/personal integrity/intelligence/etc to even *have* a conversation. That's not a fact-filled discussion. It's an attempt to make an end run around the facts by instead trying to disqualify the fact-bearers by any means available.