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[Hawk]

Few things annoy me more than seeing a forum falsely poses as a patient or medical support forum and then betray the people drawn there for help.  I just had a calm thought through post deleted from the FT forum.  I also found out directly from the administrator that he will open another site to sell merchandise.  I notice that he filed for tax-exempt status and that he gets paid for ads on the site.  Since the financial side of putting up a forum is only pennies a day, one has to ask what is going on.  It seems that doctors are viewed based on what they donate rather than on skill, experience, and patient outcomes.  I have to ask, where is the need for donations?  Our forum has twice as many members, and I have paid for it out of my billfold for 15 years.  A domain name that costs $1 a month or a forum host that costs $1 a week does not require ads and donations.    The answer is obviously in funding a sales site in which he hopes to turn members into paying customers.

It seems the loyalty is not to men seeking help. It is to a money motive. These men represent potential money to the administrator or a tax-exempt organization he controls.   When you see the facts, then the conduct over there begins to make sense.  It was only when I viewed them as a medical support site with members as their first loyalty that I was confused.

[hope794]

I love money like everyone else. But after being affected by Peyronie's and Erectile Dysfunction at 24 years old, trust me, if i would find a solution for those 2 issues i would NEVER EVER EVER EVER!! profit from it, since i know how much suffering this crap brings to a man's life.

My comment ends here.

[Hawk]

Like you, I believe in capitalism.  I think doctors and drug manufacturers should earn a good profit for their work and investment.  It is upfront and moral.  What I detest is a site that pretends to be all about the good men then let other motives take priority.  They justify and rationalize letting ulterior motives get in the way of providing accurate information to the people they say they support.  I saw it once before in the Peyronies Disease forums that used to exist before we came along.  Now we are here, and they are gone.

There are many great men on FT that could help and give guidance, but the administration seems to want to stop it.  Only information that reflects their bias is allowed.

That is why we accept no ads or donations.  While we welcome doctors, we accept nothing from them and treat them like every other member.

[Pfract]

Hawk... I could not agree more with you. I doubt my sanity for some time now. Asking myself if I was the only one seeing what was going on. Going crazy after being banned. Seeing members with amazing knowledge being belittled and silenced one after another. I can't thank you enough hawk. This board is helping me so much not to fall into a depression pit....

One only wonders the amount of clones that board has?

[skunkworks]

That is disgusting re doctors getting good promotion via dollars rather than outcomes on a patient focused forum.

[diehardpatriot]

That is not okay Hawk. Thanks for the heads up. Maybe we should try and get everyone on the Erectile Dysfunction forum we have instead

That is disgusting re doctors getting good promotion via dollars rather than outcomes on a patient focused forum.

[Hawk]

Diehardpatriot

Anyone familiar with FT knows the solid, valuable contributors there like Alibaba, Merrix, and many others, etc.  They have both had bans in the past.  I have had posts deleted.  Pfract was/is banned.  Sadly according to the administrator's own post, he wants conversations restricted to; what fears you had about an implant, how did you feel, what makes you happy, where did you find the courage to do it, etc. he said he does not have an interest in who or how you found a surgeon, what model implant you have, or how it works.  He keeps stating that FT is NOT an information site. It is just a "support site to make men feel ok.  He said he is setting up an information site, and professionals will give info, and he will sell stuff. --------------- meantime, I guess the idea is to let men make bad decisions, get their dick mangled, and then come back, and the members can make them feel good about their dilemma.

I feel for the unsuspecting men who go there for info.  While there is a lot of knowledge there, it is silenced.  Yet, those that are clueless get to ramble on dispensing misinformation.  I agree that we should build a place addressing Erectile Dysfunction where the member is the priority as we have for Peyronies Disease.  For one thing, we should not have to refer our members to another site period.  Many of our members experience Erectile Dysfunction because it is almost as much a part of Peyronies Disease as pain.  We certainly should not be referring them to a forum that does not have the same commitment of giving a free and open voice to the patient/member.  I detest "patient forums," where the "patient" is treated like a surf on the king's domain.  I have never considered this "MY" forum.  It belongs to the members, and I facilitate that the best I can.

You are correct. We should at least let all men with Erectile Dysfunction know we are here and invite them.  I am not sure how to best do that when it comes to the guys at FT.  I did invite a handful here that I knew were dissatisfied.  I will never believe that once any man experiences a forum where you can speak the truth without being dictated to by a bias or ulterior motive, he would settle for any other forum.  In very fact, that is why there are no other Peyronies Disease forums.  This one came along with no backing, no sponsors, no experience, and shut them all down.

If you happen to be on FT and want to invite others, please do.  I don't want anyone to register over there to do that.  I am not going to attack their forum.  But it is legitimate if you have friends or acquaintances there to invite them here. Right now, I know no other way.

[Stabler]

I am not sure how to best do that when it comes to the guys at FT.

Since I cant get in to FT- are their profiles set up like ours where you can add an email address for contact if you want to? If so, you could write down their emails and contact them outside of FT.

Stabler

[Hawk]

Good idea but I went and checked an no email addresses are available.  The default is to hide email addresses.

[Stabler]

Hmmm, then I guess those who are already members will have to PM the ones that you think we can help.

Stabler

[Hawk]

This is an exchange I had today with the FT administrator.  I think it characterizes their "patient forum" as a draw to pull in men for motives and plans they have down the road that are more about them than the men that come looking for help.

Hawk
__________________________________________________________________________________________________________________________

This is a heads up -

My board of directors (who are my bosses) are discussing the ethics etc of you being so vested in FT. Their concern is that it is a boundary issue. They are not at all happy that you are mentioning your forum. They are viewing it as you using FT to promote your forum. I did tell them that you do contribute some good experience. But they asked if i would ever go to your forum and start posting and I said absolutely not. they then nailed me for letting you do the same here.

They do have a point from a professional standpoint. They were very angry about the last post of yours I deleted, FYI. If I went onto your forum and went on a rant you would not be happy, I'm sure.

So, they are watching things closely. They are all attorneys and they run the foundation and are my bosses.

They asked me to let you know;

Paul
_______________________________________________________________________________________________________________________

Paul,

I find this just very strange. I have directly referred literally several dozens of men here over the 6 years I have been a member. In actuality, it could have been hundreds since thousands read our posts daily. Our forum has given a ton of good press and promotion to FT over the years.  I have had administrators and moderators of other Peyronies forums register and post on our forum regularly. We have hundreds of such posts.  I went on no rant as you well know.  I criticized your moderator's action in a specific instance along with defending him from another accusation.  I have nothing personal against anyone.  My on;y violation is engaging in "Frank" conversation which is what you advertise as the basis of your forum.

While you might not consider coming here to post, you would be welcome.  I would never consider preventing a man from access to a forum that could help him as long as he followed the fairly applied rules.

Having said that, you have the right to choose the kind of forum you want and the right to run it as you choose. I will bow out since you have done everything you could to make clear that my contributions are not wanted or appreciated. I apologize if it took me longer than it should have to get the message.

Thank you for indulging our input as long as you have.

[Pfract]

This is a shocker to me. I am truly perplexed.. Lawyers? Not wanting you to post on the board? Them watching what you say? LOL

[Stabler]

I think they are afraid we are gong to be taking their members...

Stabler

[Hawk]

I think they are afraid we are gong to be taking their members..

They should be far more concerned with all the members we won't be referring to them and the links that will no longer point to their forum.  To me, the title of the forum "FRANK" talk is a joke.  It should be "Fake Talk".  Everytime you express a preference of Dr. or implant or objective things to consider it turns into a food fight.

[Alibaba]

There are other forums where the sales hype has become rampant and I expect it has and will damage many men who get a penile prosthetic implants. That is the constant drumming of their ever expanding dick with their AMS/now Boston Scientific implant. The BS ( Boston Sci, not BS) advertising says up to 25% expansion. The proof of that expansion is on a test stand. The fact is, by a study I had posted on FT a while back, the average expansion is only about 5%at the end of 2 years and not the whole implant expands. Expansion is limited by many factors, but mainly the tension of your own corporal bodies that exceedes the tension you can apply against it by pumping it up.  At some point, I expect 1 poster's ever expanding dick to explode and shoot sales flyers out of it all over the place.

I have been on many forums over the last 20 years and most I left because of the misinformation posted by ignorant people or posters slinging misstruths to sell products as sales hype.  People can be damaged for life, in some cases die. Many intelligent caring people who can properly and accurately help many leave like i have in the past because they get tired of battering their head against the wall trying to counter the BS.  Nuff said for the moment. Cheers all.

[Alibaba]

Paul's message was nothing less than a threat. I do not like pushy people.

[Hawk]

Alibaba,  If I ever had a fault, (and I have many) it is that I do not intimidate.  I wondered if he actually thought his "board of directors" "lawyers" means anything to me?  It is a stupid public forum.  The amazing thing is they have a board of directors but cannot set up a forum well enough to make messages of importance sticky or have a forum highlights or a reference section or a dozen other features.

I am going to put a good-bye post on my journal on FT tonight and let members know I will continue here.  who knows, maybe I will be banned.  I have no idea what kind of enterprise they are trying to set up but if there really is a Board of Directors they are all as dumb as a box of rocks.

[skunkworks]

Doesn't that essentially prove they're a financially motivated organisation, basically advertising posing as unbiased information?

[Hawk]

Exactly Skunkworks!

They just told Merrix (one of their very most valuable members) to not give out any more information.  Just give out "support".  And specifically not to talk about Rear Tip Extenders because no one wants to hear about that   Then why do they think their members make topics entitled "Can someone please explain Rear Tip Extenders"   And why would Dr. Eid make a video showing the same man with RTE's and showing him again after a revision that eliminates RTE's ?

Merrix posted to a guy asking a question about his implant function something like - "I think I could give you a pretty good idea of what is happening, but recently the Administrator of the site has been running a campaign to make it clear that this is a support site, not an information site.  Members are encouraged to not give information, but support and encouragement. 

So, My dear Implantee. Don't worry. I am sure it will be ok. Implants are great. Especially AMS implanted by low volume local doctors. Next time, maybe that's what you should get. Don't worry about the problems you have. If you have questions to ask, contact your doctor. Just be strong. We are here to support you. All your brothers think of you and pray for you. Amen."

It is so sad but I have to admit I LMAO!   Maybe FT is going to stand for FUBAR Talk because if there is any place where FT is shut down it is there.

[TonySa]

It’s really crazy over there on FT, I’m so thankful you expanded this forum to include Erectile Dysfunction and implants!

[james1947]

After a few years that I didn't click on FT, I was surprised to see advertisements, they were not there in the far past.
And me, others on our forum were sending people to get info there

James

[Hawk]

The ads are one thing, soliciting contributions from doctors another.  The ones that give you money are the ones you serve.  The point is that anyone interested in doing some work can afford a real patient based forum.  It generally costs very little if you break it down to weekly cost.  the cost is in personal time.  So when people sell ads, ask doctors to donate, you have to get suspicious.

This is a repeat of what existed in the world of Peyronies Disease forums 15 years ago.  There was a forum that had doctors sitting on the advisory board.  It sounds cool to start with, then you discover that they dictate and the member/patients on the forum cannot say anything that they disagree with.  Back in those days, they laughed at men for using VED's and traction for therapy.  Those tools are the product of the patients discovering what works and then the doctors finally jumping on board.  Like many that get a god-complex when they run a forum, they had thought police that told members what to think and what to post.  They would delete posts and actually edit out sentences from your post without telling anyone.  I vowed to make a forum where that would NEVER happen.  When we RARELY touch a post for clearly violating rules, we make a bold notation right in that post.  members have a right to know if they are reading edited material.

BUT

All of that is just the beginning.  The administrator/owner at FT is ramping up for setting up a linked site that sells products and sells a bunch of books he authored.  He is using a forum where men come, thinking they are the priority but finding out he is using them to market himself.  Sites like that have to control dialog.  Stating a doctor's record must not offend that doctor (if he is a donor) or it must not praise him if another doctor is a donor.  If you are trying to sell books with information then you don't want free information readily available on a forum.  You have to convince people they need you to supply the information they seek so you can sell books.  If there is anything I oppose, it is seeing people with problems, desperately seeking answers being lured to a site that is not what it seems to be.  They think they are on a site where they are the top priority, where they can talk as freely as they could in their den or sitting in a bar or around a campfire, only to find out there are thought police sitting in the circle with them.  These thought police are not there to help information flow and facilitate discussion for the good of the group.  They are there to dictate what can be said based not on what is in the best interest of the thought police.

[Alibaba]

I've communicated with Merrix from time to time soon being 3 years.  I cannot imagine how much this ticks him off @ FT. The misinformation is what got me into my first crappy implant surgeon and I wanted to make sure no-one else did the same. I wonder how long it will take for me to get a warning? Cheers and look outside the box. The view is better.

[Alibaba]

Well said merrix.  I am sorry for the guy who is not going to get the help he needs. DAMN!  If I wanted mis-information, I would just open a twitter account or go to FB and wait for the Russian troll bots to send me some. When administration is sending out such messages, that is some real f'd up $#it!

[Hawk]

This is a heads up -

My board of directors (who are my bosses) are discussing the ethics etc of you being so vested in FT.......They are not at all happy that you are mentioning your forum. They are viewing it as you using FT to promote your forum. I did tell them that you do contribute some good experience. But they asked if i would ever go to your forum and start posting and I said absolutely not. they then nailed me for letting you do the same here...

So, they are watching things closely. They are all attorneys and they run the foundation and are my bosses.

They asked me to let you know.

Paul

I return to this very strange and puzzling private message from the FT administrator.  Can anyone that knows more than I do tell me if 1) it is true that a bunch of lawyers actually do run FT and tell Paul who can post and who can’t post.  2) Or, is Paul just lying.

I am not sure which is most disturbing but I guess I would say number 1).  It would mean that instead of an Erectile Dysfunction forum run by a concerned brother suffering from Erectile Dysfunction that it is run by a bunch of attorneys with concerns, interests, and priorities, far different than the members.  No wonder the members there don’t feel represented by the forum.

[Alibaba]

Let me suggest this. An attorney purchase the P.U.D. device rights years ago and markets it. So by that standard, a group of attorneys could possibly own and run FT and his marketing business. For all we know, send me your porn stories Rev. could be fictitious.  One thing is certain. The site has gone through a couple evolutions and certainly not what I thought it was. If you know what state he is incorporated in and it does say Inc. in something he had on the site, you can look up his corporation filing with the secretary of state and see who is the owner, address, date of filing, if they are paid and current, and who the attorney or directors are.

[TonySa]

WhatsPUD?

[Alibaba]

Pfract,  Penile Uncircumcision Device. There are 2 basic design styles.  Basically a weight for foreskin restoration. I could post pictures of my device if I understood the picture aspect of this site.
The PUD Foreskin Restoration Device    Although I have used this device and have no complaints about it, this is not an endorsement.  I do support foreskin restoration and have a big issue with circumcision but that is my person view. Several of the foreskin restoration devices have been purchased by attorneys and turned into business ventures in the last decade.
As I have said before, there is almost nothing I;ve not tried for E.D. over the years. Cheers.

[Larry]

That is disgusting re doctors getting good promotion via dollars rather than outcomes on a patient focused forum.

When I became the Moderator, the Admin - Paul, told me to watch for people advertising for their favourite doctors.  I would tell the offenders to stop and if it continued, I would delete the post... then, of course, they would complain to Paul that I had deleted their post and he would pretend that he was appalled and then send me a private message... eventually he told me to forget about the advertising.  Some people would talk about freedom of speech violations but they needed to read up on that since it does not relate to a private forum... only public sites like government sites (if any in the US even exist). This is only one of the many things I had to endure over the last two years.

Larry

[Hawk]

Larry,

Those of us who got to know FT well realized what was going on behind the scenes.   Paul badly used you, and then when you did not serve his purpose, banned you. That alone says a lot about the man.

It is clear what was going on when you link the fact that he had paid ads on the site for some surgeons but did not want unpaid good reports posted by actual patients of other surgeons. 

Also, what you say about free speech is exactly correct.  In the U.S., only the government is prohibited from preventing the exercise of free speech by the First Amendment of the Constitution.

Legally any forum can limit any speech they want.  However, that does not make it ethical, or at least it does not make it loyal and beholding to its members.  Much of the internet is run in a way that forum administrators play god.  They do what they want, not what is fair, right, or ethical.  The fair thing is for everyone to have a voice in the rules, know the rules, and have them administered the same with everyone.  A good sign that you are doing that is when the administrator finds himself annoyed by the rules of his own forum.   As all the moderators and administrators here will tell you, I find myself in that position regularly.  I want to tell someone off or ban someone or delete a post, but I can't because our rules do not uphold such action in that set of circumstances.  I am committed that the members of this forum are the true priority.  That is the only way to have a true patient advocacy forum.  Anything else is a sham.

Larry, I think it is pretty clear by now that you are welcome here.  Any issues that any of our members have with FT are nothing against you personally. You are among friends.  We deal out in the open and not behind each other's backs.

[Larry]

Larry,

Legally any forum can limit any speech they want.  That does not, however, make it ethical or at least it does not make it loyal and beholding to its members.  Much of the internet is run in a way that forum administrators play god.  They do what they want, not what is fair, right, or ethical.  The fair thing is for everyone to have a voice in the rules, know the rules, and have them administered the same with everyone.

Hey Hawk.. Paul lead me to believe that because of our non-profit status, the advertising jeopardized our status with the IRS.  Being Canadian I assumed what he said was true and therefore advertising was taboo and regardless of the right to free speech, it had to be stopped, and then, all of a sudden, advertising was ok... but, by that time, I was the bad guy.. You have members here that I deleted because they refused to abide by that

Larry

[Hawk]

Don't worry about Larry, No one holds any hard feelings over that.  That was then this is now

i need someone to talk about this

Started by 20yo Psychological Component - Coping with Peyronies Disease

Need someone to talk to rn

Started by westerntown Psychological Component - Coping with Peyronies Disease