Advertising policy ...


Posted by Moderator-JB , Mar 19,2002,16:54   Archive
Please read over the Bulletin Board Policy listed at the top of the page. It's there for everyone's protection.

Judy Blackman
blkmn36@earthlink.net
Moderator

http://www.blepharospasm.org/forums/bebx/policy.html




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Re: Advertising policy ...

Re : Advertising policy ... --- Moderator-JB
Posted by June in Toronto (June Floyd,June in Toronto), Mar 19,2002,17:05 Top of Thread Archive
I done read it, Judy - thanks

June in Toronto




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Re: Advertising policy ...

Re : Advertising policy ... --- Moderator-JB
Posted by Dee in OR , Mar 19,2002,20:43 Top of Thread Archive
<<<>>>

Yeah, right. As long as it is blessed by traditional, closed minded doctors. And if it's not, it gets deleted and thrown away. I shared my success with HydroEye and my message was deleted because I was "advertising"! And all you desperate, vulnerable patients are so busy being victimized by me, an unscrupulous purveyor of unproved or ineffective claimed treatments or cures. I think the real danger here is the closed mindedness of the medical profession.

As one of the regulars said of the bulletin board, "You will find it very helpful although you really have to filter out things and try to do what you think is best. You will hear from people of all faiths and medical beliefs. Some think that Botox is really harmful although the vast majority don't. That doesn't make them wrong and we need to respect their journey to find relief for themselves."

It is our policy on our web site to not allow advertising of proprietary products or services. There is a definite danger of desperate and vulnerable patients being victimized by either well meaning or unscrupulous purveyors of unproved or ineffective claimed treatments or cures.>>>>

Dee in OR where I'm planning my next attack on unsuspecting, desperate, vulnerable patients.




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Re: Gotta love ya!

Re : Re: Advertising policy ... --- Dee in OR
Posted by Sally - in - Idaho , Mar 19,2002,20:59 Top of Thread Archive
Dee, Dee, Dee ... gotta love ya when you get your ire up! We need your kind of rebels to bring up new things, but then we also need the police now and then to keep a tight rein for protection of some.

Just get ready for the ark and we'll all talk it over at Christel's. Judy had better come along too in case some of you get rowdy!

Sally in North Idaho




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Re: Advertising policy ...

Re : Re: Advertising policy ... --- Dee in OR
Posted by Delaine Inman , Mar 19,2002,23:14 Top of Thread Archive
Don't take it personal or stop speaking your mind. I'm guilty and so is everyone who mentions a drug, product or herb by name. I understand why they have the policy, but I don't think that means we can't continue to share what has and hasn't worked for us and if people ask about something that works, that is not taking advantage. What works for one may or may not work for another. Those who know and love you know you wouldn't take advantage of anyone and like the BEBRF have our best interest at heart. We all have the same goal.....to find something that works or helps even in some small way to give us relief.

--modified by Delaine Inman at Tue, Mar 19, 2002, 23:15:34




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Re: Advertising/Dee-infamous unscrupulous purveyor

Re : Re: Advertising policy ... --- Dee in OR
Posted by Shanasy in IL , Mar 20,2002,11:47 Top of Thread Archive
Well put Dee. I have to agree with you. I. myself, am trying 4-5 different alternative treatments (therapies) right now (none of which I've ever seen mentioned on this board before) and if any of them work I hope to advertise all over this board what worked for me and hope it will work for others, even if it only helps one person! If a product/service helps someone, how can one NOT advertise the product/service!? "Sharing what works" IS an advertisement. The particular brand IS VERY important - it CAN'T be ignored. As there are many products out there for dry eye and so many sufferers, I would certainly want to know EXACTLY what BRAND worked so well for someone so I could try it. I didn't try the Hydroeye only because dry eye is not a problem for me anymore (as most of you have seen ME advertise the product that worked like a miracle for ME).

I believe that it is up to the READER of the BB to try to determine from each posting the validity of the "source". The fact that Dee is a "regular" and we KNOW she truly suffers, like many of us, to me, that gives alot of credence to what she says. Any product that helps her, I would certainly try. In fact, I would try it BEFORE I would even try some "controlled study of a new drug" given by some medical researcher.

And, sure, we can all be at times "desperate and vulnerable patients"...however, I am wondering why if one recommends a product/service, that is not "medically/pharmaceutically proven" it seems to be immediately labeled as "unproven/ineffective/unclaimed". Well duhhhh....as for hydroeye, Dee "claimed" that it works for her! I know Dee, and thats be "claim" enough for me!

Also, please let it be noted that my NO. 1 use for this BB IS to see what others are "advertising" as working or not working for them (drugs OR alternatives). That is the absolute best thing I get from this board.

So, please, let's keep advertising what works and let the BB reader decipher what they want to try and from WHOM!!!!! I feel the BEB BB should be more open-minded and consider changing the policy so that we can help others by telling them SPECFICALLY, NOT GENERALLY what helped us! If advertising gets out of hand, then the "policy" can be reviewed again and re-written at that time.

Hugs to all,
Shanasy, just another unscrupulous purveyor!




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Re: Advertising/Dee-infamous unscrupulous purveyor

Re : Re: Advertising/Dee-infamous unscrupulous purveyor --- Shanasy in IL
Posted by jeff , Mar 22,2002,10:32 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: Advertising policy .../Judy

Re : Advertising policy ... --- Moderator-JB
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 20,2002,06:50 Top of Thread Archive
I was just thinking about you the other day. How are you doing with your mother and all, your eyes, etc. It must be hard to be the moderator and have noone ask you about your concerns!?



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Re: Advertising policy .... How are you, Judy?

Re : Advertising policy ... --- Moderator-JB
Posted by Kathy in Atlanta (kathy,Kathy in Atlanta), Mar 20,2002,06:52 Top of Thread Archive
I was just thinking about you the other day. How are you doing with your mother and all, your eyes, etc. It must be hard to be the moderator and have noone ask you about your concerns!?



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