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#20341 - 06/28/05 12:30 AM Board rules reminder
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Everyone that is a member here agreed to this statement when they joined the board. This particular forum seems to have a lot of violations to the board policy.

Please note that advertisements, chain letters, pyramid schemes, and solicitations are inappropriate on this BB.

This only seems to be a problem for our newest posters.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#20342 - 07/01/05 08:57 AM Re: Board rules reminder
Edward Offline
Member

Registered: 06/15/05
Posts: 6
Loc: Abbotsford, BC, Canada
Hmm, interesting. You know, this is just a suggestion, but I think you may have to consider updating your policies for your forums considering that A) It appears that accepted allopathic medical science has very little to offer people who suffer with this rare type of disease, but more specifically B) this part of the forum is clearly satated as alternative therapies.

Where would you think that alternative therapies would originate from? A drugstore?

If you know much about the recent history of natural herbs, supplements, etc. Most of them have used a network marketing approach to market their products. It's just a guess to me but I believe the reason they do it is probably because that form of marketing has been proven time and time over as a viable way to bring a new product to the mainstream.

In any case, if the help you all are looking for is subject to beinig bicketed by forum rules, then I have to leave that in your hands, but in my opinion, you arent going to have much hope in finding workable, alternative solutions without the help of people who may have stumbled onto new products or opportunities that you have not.

Zoner

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#20343 - 07/01/05 09:02 AM Re: Board rules reminder
Edward Offline
Member

Registered: 06/15/05
Posts: 6
Loc: Abbotsford, BC, Canada
Furthermore, if anyone has anything at all to post into a forum titled alternative therapies, they are more than likely going to have to violate one or more of those forum rules just by saying anything at all of importance in here.

What sort of alternative therapies are people allowed to discuss in this forum without said discussion being viewed as advertising for instance? Any mention of any possible solutuion as far as I am concerned is advertising, unless I missed something in Business 101.

Anyway, I hope you all find solutions to whatever ales you.

Edward Kerrie

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#20344 - 07/01/05 10:33 PM Re: Board rules reminder
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Edward
I have been a part of this wonderful ichthyosis board for almost 7 years now and a part of our ichthyosis foundation since 1982.It is long overdue that I set the record straight on what can be said regarding solicitations and advertisements for financial gain.It is specifically stated by the sole owners of this website, Chris and Laura Phillips,that no one can advertise a product for self gain.It is their proragative, alone, in setting guidelines they feel appropriate for this place we can share experiences,questions,ideas, and commoraderie.They have developed this site, financed this site, and through their hard work and devotion, have brought us all together. They have earned the right to set parameters they feel necessary to insure a not for profit board.We all come to this board trying to help each other with their skin problems.All of us have different experiences, suggest methods of treatment. and try to help each and every individual without the "for profit" dollar figure in mind. I suggest if you feel wronged, start your own website, finance it with your own money, and market it with the education you received by taking Mkrt.101.
Sincerely,
Les Avakian


[This message has been edited by Les Avakian (edited July 01, 2005).]
_________________________
Les Avakian

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#20345 - 07/02/05 11:59 PM Re: Board rules reminder
Edward Offline
Member

Registered: 06/15/05
Posts: 6
Loc: Abbotsford, BC, Canada
I don't feel that I have been wronged in any way. I think the point that I was trying to make is that you seem to be wronging yourselves as a support group by trying to censor your own network of information.

I've already decided to follow your rules and policies and to stop making suggestions to help your support group.

It's clear to me that you don't want recommendations, advertisements, etc coming from people who would be in a position to financially gain from sharing the information.

To me that is just a rediculous standing since some party is ALWAYS going to financially gain as long as any product is involved. If I had mentioned any product that I dont particularly happen to distribute or financially gain form, I guess that you would have had no problem with that whatsoever. But whoever sold that product would have financially gained from it had anyone decided to try it.

At the end of the day, I am not at all bothered one way or the other. Specifically because I am not the one missing out. I take the product that I previously recommended and it does wonders for me, also for my frineds and family that I have now shared it with and in about the next few years, the product is going to be a household name.

The fact that I may not gain financially by advertising said product through this or any other forum due to your forum policies is duly noted.

I find that a shame to your policy makers as well as your policy enforcers because all you are doing is shutting down something that could potentially help anyone who gives it a try.

How about this option, look into the stuff and if you decide to try it, DO NOT CALL ME and I WONT help you get involved with the product.

Would you consider it a valid suggestion then, as long as someone else other than me had finacial gain if someone decided to try the product?

You guys are so focused on whether someone is trying to make a buck that your willing to discard any information that comes from someone potentially selling something in order to follow policy that you could very well miss out on a stellar solution all in the name of what seems to me to be protecting the best interest of all of the people who participate in the forum.

I would have preferred something more along the lines of someone perhaps notifying me that YES they tried that particular product and it DID NOT work rather than policy police notifying the members of the forum that certain posters are violating policy and procedure.

People have brains and people have the ability to do their own research and people have the abilty to make their own choices in life. Except of course, right here in your forum because that freedom has been taken away by those who made certain policies.

And YES, I will abide by your policies as stupid as they seem, you won't hear anything more from me.

Good bye and good luck.

Edward

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#20346 - 07/07/05 12:23 PM Re: Board rules reminder
Laura Phillips Offline


Member

Registered: 07/31/08
Posts: 12
Loc: Detroit, MI
Now that I've done some quick catching up on recent postings here and have stopped laughing, I can respond:

Hearsay and Les--many thanks for speaking up on my behalf. As best I can tell from the posting history (here and on other threads), Edward does not have ichthyosis himself and is simply a distributor marketing his product. And that, you correctly pointed out, violates the terms of use of this bulletin board. With only that understanding of Edward's identity and background, if he chooses never to post here again, that's probably a good thing (will save me time, counseling, and simply locking out his ID, which he was quickly working his way toward anyway).

I would like to clarify, though. It was Edward's indignant responses that had me laughing. To say that we're only hurting ourselves, cutting ourselves off from potentially helpful information, because someone, somewhere, is going to benefit financially (even indirectly) from anything positive you say here about any product, and, therefore, following the terms of use of this board constrains, in a very destructive manner, what you post here, is simply silly. That interpretation of the terms of use of this board is a tortured, extreme, and incorrect interpretation.

Here are some additional thoughts:
  • If you have ichthyosis yourself and are not a distributor/agent/seller of the product you are discussing, it's going to be very hard for you to go wrong under the terms of use of this Board if you share information about products that you believe are helpful.
  • If you have ichthyosis yourself and ARE a distributor/agent/seller of the product you are discussing, a great deal of care will need to be exercised in discussing the product with which you are associated. Simply disclosing that you are a seller or otherwise stand to gain financially is NOT sufficient under the terms of use. I appreciate that you may feel passionately that the product you represent is terrific in every way and would be a great help to people here, but you simply may not use this board to market your product (this could result in a direct financial gain to you personally). And if that has the effect of reducing the info available to people here, than so be it. This isn't the only place on the web that anyone visits. You have other ways of attracting customers and sharing information, and users of this board (potential customers) have other ways of finding out about your product than hearing about it on this board.
  • If you do not have ichthyosis yourself (or a related skin disease) and are simply marketing a product, I urge EXTREME CAUTION to you in posting on this board about your product. Simply posting that you endorse/sell/represent a product and will help people obtain it for money would be a violation of the terms of use of this board. Even posting information on this board and offering to send FREE samples to anyone who was interested (in hopes of later attracting paying customers) is really just a form of prohibited advertising. If you would like to make offers to provide your product for free, forever, to anyone with ichthyosis, that would be different. If you would like to provide the complete recipe for your product on this board, that would be different. Most people looking to sell a product are, however, unwilling to do either of these things (it tends to undermine the whole "they're looking to directly benefit financially, at least at some point, from this dialog").


In short, no one with ichthyosis should feel that this policy contrains your ability to share information with other people about ichthyosis and possible treatments--when you do not stand to gain financially directly from the converstion. DIRECT FINANCIAL GAINS is what this policy is targeted at. INDIRECT financial gains are not what is at issue here--DIRECT financial gains by agents/resellers/etc is the issue. So far, in the history of this board (which is getting longer and longer), no has had trouble with this policy or been offended by it other than a couple of people who were sellers of some kind.

Let me also take this opportunity to give a shout-out to all the regulars here who keep the sense of community going on this board--many thanks for all your hard work and energy. It's a good feeling to know that, even though Chris and I can't be here very often anymore, the place is in good hands.

Laura



[This message has been edited by Laura Phillips (edited July 07, 2005).]

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#20347 - 07/07/05 12:42 PM Re: Board rules reminder
Deidra Offline
Member

Registered: 03/08/02
Posts: 162
Loc: Lancaster, Ohio USA
I just want to support Laura in her Bulletin Board Policies. I for one love coming here and hearing people's ideas and suggestions and knowing they come from personal knowledge and experience of ichthyosis rather than solicitors.
Dee
_________________________
Dee

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#20348 - 07/07/05 01:42 PM Re: Board rules reminder
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
Laura, thank you for posting. I'm sure you realize from both my email to you and from reading this board that I wasn't targeting Edward. We had a spate of marketers directly attacking me in the penta water thread for debunking the supposed science behind it. There have also been a few people pushing Chinese medicine and some other random fruit-derived products since the beginning of this year, and truthfully, I was getting tired of the advertising.

Like Dee, I enjoy coming here for help and to offer help to the new visitors. I thank you for making this haven available to us.

Jennifer
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#20349 - 07/08/05 12:28 AM Re: Board rules reminder
immystique Offline
Member

Registered: 03/09/05
Posts: 271
Loc: Grand Junction, CO, USA
lol. I have to agree here. One of the things I love about this board, besides meeting people like me, is hearing what works for everyone & what to watch out for. I'm always on the lookout for something that's less greasy than Vaseline!
Apparently some people don't realise that there is a HUGE difference between saying "visit my website at blahblahblah.com for the latest 'cure' for ich" versus saying "I use such-and-such scrub and it really helps get the flakes off".
It's the posts claiming to "cure" ich that really get me rotfl! The sad thing is, the new post-ers who have infants w/ this rare & confusing condition read the word "cure" and cling to it like a cat on a tree in a flood.
_________________________
If the grass looks greener on the other side, maybe it's time to start watering your lawn!

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#20350 - 07/08/05 11:18 AM Re: Board rules reminder
Lisa Marie Offline
Member

Registered: 01/04/01
Posts: 168
Loc: NY
Laura - It's been awhile since you've been on here and it stinks that you have to deal with the childish temper tantrums of certain people. For those of us who come to this site and feel they are a part of the Ichthyosis community, we have total desire to help each other in any way we can. All without a profit or even a thanks. Anytime something works for me, I'm eager to tell someone else in hopes they'll find relief also. It burns me up when someone comes on this BB and starts spouting information as if it will be a cure for us. It's obvious they have no idea how Ichthyosis works and what will help us.
So thank you for this site. It's been a link to a world my friends and family don't quite get.

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