Deleted


Posted by Dee in OR , Mar 19,2002,20:11   Archive
Well, once again the Bulletin Board Police have deleted my post about HydroEye. Said no advertizing. Didn't know I couldn't share about a product that really worked for me. Try to do something nice for you all and BAMM! Well, if it's not TRADITIONAL, then the Police don't want to hear about it. This censorship really tics me off. I will NEVER try to do a favor for the BEBRF members again.

I suppose the next message to be deleted will be about the therapy light!

Dee in OR

--modified by Dee in OR at Tue, Mar 19, 2002, 20:12:25




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Re: Deleted

Re : Deleted --- Dee in OR
Posted by June in Toronto (June Floyd,June in Toronto), Mar 20,2002,05:08 Top of Thread Archive
Hold your horses, Dee - don't let it get you down. I don't think its because you talked about HydroEye, just that you gave a reference of where to buy it and that's the no, no I guess. Go sit in front of your light with a nice, tall, long one and keep smiling.

June in Toronto who understands both sides of the story




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Re: Deleted

Re : Re: Deleted --- June in Toronto
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 20,2002,06:38 Top of Thread Archive
I gave info on both these eye products and it certainly was not an advertisement . I am grateful when someone tells you exactly where to get stuff as it saves a lot of eyework, which is nice especially when they don't work all the time.



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Tough job I wouldn't want.

Re : Re: Deleted --- Kathy in Atlanta
Posted by Delaine Inman , Mar 20,2002,08:25 Top of Thread Archive
Almost all us ole timers have mentioned products and where we got them. Moisture Eyes has been mentioned several times and links to what is in it and who makes it. Drugs from Canada not available in the States could even fall under that rule if we get picky enough. The fact the company was involved and in a way soliciting through Dee and Phil re: discounts if a certain # signed up was probably the thing that deleted the post. Dee had tried it and it worked for her and I know her intentions were good and her heart in the right place. The moderator and policy board were just following the rule of the law re: advertising and I can understand where they were coming from on this paticular one. We're ok. Judy has a very tough job and I admire she does it so well. We can be a rowdy bunch and she is one of us, too.

--modified by Delaine Inman at Wed, Mar 20, 2002, 08:27:52




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Re: Tough job I wouldn't want.

Re : Tough job I wouldn't want. --- Delaine Inman
Posted by Shanasy in IL , Mar 20,2002,12:13 Top of Thread Archive
You sure right about all the previous "advertising". There's been alot! (No complaints here!) However, I don't understand why if someone knows a place to get the product "cheaper" somewhere else, what's wrong with telling others? Sure it's advertising - but how else ya gonna get the word out to help others? Saving money is ALWAYS a big help!!!!

Shanasy - getting my 2 cents in




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Re: Tough job I wouldn't want./Shanasy

Re : Re: Tough job I wouldn't want. --- Shanasy in IL
Posted by Ann Doyle , Mar 21,2002,06:58 Top of Thread Archive
I don't mind saving money but I don't want this site to turn into a seller's site. It's a fine line to walk.
Getting my 1 cent in====cheaper than Shanasy. Ann Doyle



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Re: Deleted

Re : Re: Deleted --- June in Toronto
Posted by Shanasy in IL , Mar 20,2002,12:06 Top of Thread Archive
Sorry but I have to say this June. Why brag about a product that helps you if you can't tell others where to get it? It's like a joke without the punch line!

Shanasy - hoping I don't tick June off




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Re: Deleted

Re : Re: Deleted --- Shanasy in IL
Posted by June in Toronto (June Floyd,June in Toronto), Mar 20,2002,14:13 Top of Thread Archive
I'm not ticked off at all Shanasy - I don't know all the ins and outs of why the moderator deleted the message, I was just guessing.

June in Toronto who has to get a lot more than Shanasy's message to get `ticked off'




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Re: Deleted

Re : Deleted --- Dee in OR
Posted by Dee in OR , Mar 20,2002,10:01 Top of Thread Archive
First of all, the company was NOT soliciting through me & Phil. Phil approached them and asked them for the discount. And second, it is obvious that there is "selective censorship" and a double standard here. Did any of the posts for FL41 ever get deleted? Or how about posts about Splenda or MoistureEye? I'll just keep my success stories to myself and not try to help anybody.

Dee




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Re: Deleted

Re : Re: Deleted --- Dee in OR
Posted by Shirley-Arkansas-USA , Mar 20,2002,10:45 Top of Thread Archive
Hi Dee. I think that there is a very fine line here. I don't see that anyone would have a problem with you, me or whoever posting what works for them. That is what the bb is about. Sharing of knowledge and things that we have tried and support. We've all done it. I posted pictures of the FL41's-we post a link to the website where you can get them. They are not perfect or helpful for everyone but do give some relief from their light sensitivity.
I don't know and I haven't talked to the moderators about this but my feeling is that the problem might have to do with trying to get a "group" of those interested to go through you and or Phil for a discount from the company or even posting of the link with a discount applied for people from the bb. This has nothing personally to do with you, Dee and I think that you are taking it very personally so stop thinking that way. :-)
We all want to hear about things that have worked for you or anyone else. There is a fine line between sharing what works for you and advertising for that product in a business sense. I like to know what is in those products and what the claims are and where I can find out about them but I don't necessarily want to be encouraged to buy the product through a discount or group buy. I know that you are and were only trying to help people and save them some money.

I would encourage you to email Judy or Bob or Don and ask them the specifics and see if they can give you some insight into this. Be nice, though. I've been deleted before too and have also deleted some of my own posts.
Love ya, Dee-hang in there and come to your party. People are expecting us to disagree.

Shirley




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Re: Deleted

Re : Re: Deleted --- Shirley-Arkansas-USA
Posted by Dee in OR , Mar 20,2002,11:11 Top of Thread Archive
Thanks Shirley. But as I posted, anyone who wanted the product could just call up the company and tell them they were a member of the BEBRF and they would get the discount. Simple as that. Guess the Police see it differently. And just for the record, we don't get anything out of this except the satisfaction of helping friends. And even that doesn't seem to count.



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Re: Deleted

Re : Deleted --- Dee in OR
Posted by Alan Phair , Mar 20,2002,11:26 Top of Thread Archive
Dee, it is too bad that you are taking this so personal. The moderator(s) on the board do an excelletn job and it is a fine line that they have to draw. I do not think that they are being selective at all. In fact, when I read the post about HydroEye, I said to myself " here we go again, this certainly sounds like someone selling something" Now if I thought that and by the way, I never mentioned it to the moderators, I would hope that they would pick up on it as that is her (their) jobs. I cannot say for sure whether it was your post or someone elses as I did not pay attention to the name only the content.

I kind of liken it to Arthritis reliefs. When I was in the Drug business, it never mattered what the product was, anything new for Arthritis would automatically sell like crazy for the first 3 months or so. Why, because people were desperately looking for any solution to help them. The same is obviously true with BEB and someone has to try and help minimize the vulnerability of many people on this board by limiting what could be perceived as solicitations for new products. I am sure that you meant no harm and were only trying to help but if it were the post I am thinking of (it may not be) then it just came across wrong. No harm done and hopefully, you can see through this and still be a valuable member of this board....Alan

P.S. Judy, keep up the good work.




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Re: Deleted

Re : Deleted --- Dee in OR
Posted by jeff , Mar 22,2002,10:37 Top of Thread Archive
As "co-moderator" of the DMRF board, this is an issue that I am very sensitive to. On our board (and I know Judy does the same here), we try very hard to distinguish between "Here is an idea that works for me" posts and advertising. The former are OK, the later are not.

As Bob said in his separate post, there are obvious scams - a newcomer posting a plug for an MLM product or the like. In this case, the nature of the comments and Dee's long membership on the board makes it a much more difficult call. Your moderators responded the same way we would have on the DMRF board - leave the comments, but delete the link to the manufacturer's site. If anyone wants to try the product, they can e-mail Dee and ask for the information, and the discussion of the benefits of the therapy are here. However, there is no "advertising" for how to buy it on the BB. We do exactly the same thing with discussions about "conventional" drugs - the only link to a manufacturer's site I can remember allowing was one to Allergan's reimbursement program that helped people without insurance pay for the cost of BOTOX.

Jeff Harris
co-moderator, DMRF Bulletin Board




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Re: Deleted

Re : Re: Deleted --- jeff
Posted by Dee in OR , Mar 22,2002,11:25 Top of Thread Archive
The only reason you "allowed" the link to Allergan is because they helped finance the dystonia web page!



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Re: Deleted

Re : Re: Deleted --- Dee in OR
Posted by Alan Phair , Mar 23,2002,20:58 Top of Thread Archive
Dee, why don't you just let it die. It takes a big person to understand that they cannot always get their way even if they believe they are right. Without someone to monitor this board, it would die a quick death and all the benefits people get from it would be lost. There are ways to get messages across without advertising but for some reason you stepped over the line and are having a hard time getting back on the other side. Obviously you don't want to and that is a shame because I would hate to lose someone who has a lot to contribute. Every time I hear people bad mouth the FDA or the regular prescription medications, I remind them that since the turn of the century, Mans (womans) lifespan has doubled. I don't think it is because we eat healthier food or have a calmer lifestyle. Back then people used herbs and natural medicines. Since then we have improved and have medications that have helped the human race immensely. I have a lot of close friends in the Pharmaceutical industry, in fact, my Company just bought a research firm that helps develop new Pharmaceuticals for major manufacturers. I have no problem with companies that go through the proper channels to get something approved. What I don't like are those that because they can't get approval, turn around and try and push their products anyway to unsuspecting customers. Sorry to get on my high horse again but I really get ticked off when people try to downplay traditional forms of medication and think that holistic or natural treatments are the way to salvation. I will not argue the fact that I think the Manufacturers make too much money on their products but then again the cost of research today is astronomical. It is the Doctors that are really raping the consumer but that is another story for another day. I think I will go join in a pity party so I can loosen up a little. Have a nice day....Alan



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Re: Time to agree to disagree

Re : Original Message ---
Posted by Shirley-Arkansas-USA , Mar 24,2002,11:54 Top of Thread Archive
I'm really sick of this entire thing. Everyone has their own opinions on this. There is truth to some of what everyone has said. No one is 100% right or 100% wrong. We're adults here and we all have our own beliefs and we probably are not going to change anyone's mind on this and we really shouldn't even try. That is not what we are here for.
Everyone that has been on this board for any length of time knows that we talk about traditional, modern, alternative, experimental, holistic and lord knows what all types of things and ideas openly and without being attacked. The BEBRF newsletter regularly has a mix of these things in it. The yearly conferences have time set aside for alternative approaches and stress management techniques (at least they have when I've been there). It may not be as much as some would like but none the less, it is there and if things should come to light that are helping people, more time may be allowed in the future. No, the doctors don't always want to discuss these things during their "time" as they are there to give a presentation or talk on what they feel is beneficial and important to the topic. That is their right and many benefit from this. I repeat that time is given to alternative approaches. It is primarily a conference for physicians and patients at this point. Some of you might want to rally for an alternative approach conference. If there is enough success with alternatives, I'm sure that it could be done.

People, there is room to discuss everything. No one is telling us that we can't. This is a moderated board. I want it that way. It is one of the reasons that I am here. I like guidelines. I like NO Advertising. I don't like sarcasm and name calling and being told that I must be a follower. It is counterproductive and hurtful.
There have been things said that shouldn't have been said. Explanations have been given for the deletion of the post with the link in it. Get over it or move on. There was nothing personal in this until the accusations and sarcasm began. Now, it has gotten very personal and people are being hurt because of all things-a no advertising policy. Talk about it all you want to-just don't give me a link to the business site unless I personally email you and ask for it!

Dee, this was not about you-it was about a link to a business site. Everyone has tried to explain that to you and we have continued to be nice as you have lashed out at others. We are not your enemy! The BEBRF is not your enemy nor is the "moderated" bulletin board your enemy. It is supposed to be a reasonably safe place to come and discuss treatment options and offer support to others. I know you well enough to know that you want to help others-it's a part of you. Step back from this for a couple of moments before you post a reply or write it down and tear it up (maybe a couple of times :-) ). Repeat to yourself that this was only about a link to a business site. It's not worth the extra fuss.
And one more thing for you to get mad at me about. It ain't over if you are stlll signing off as "member of QuackWatch-Go Ducks" . That is "throw it in the face sarcasm" and let's everyone know that you are definitely not over it. So, be mad or privately email me and let me have it or whatever.

Shirley who wants to be friendly again.




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Re: Time to agree to disagree

Re : Re: Time to agree to disagree --- Shirley-Arkansas-USA
Posted by June in Toronto (June Floyd,June in Toronto), Mar 24,2002,18:57 Top of Thread Archive
Way to go Shirley - you said it like it is - thanks

June in Toronto




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