Posted by Dr. Bob on April 21, 2001, at 17:05:20
> > > the drug companies plant people on this site to try and diffuse what us "sufferers" are going through.
> >
> > Please refrain from making accusations, especially unfounded ones. Do you have evidence to support the above? If so, please let me know, I would of course be interested.> Dr. Bob:
>
> I don't have much of a "history" with the postings about Effexor, nor Pamela as a contributor here. I've only started visitng the site again recently (I visited it quite regularly last summer.) I think you might be interested to know, however, that I had an experience last year which leads me to believe that Pamela's accusations might not be very far off the mark. I CANNOT verify her exact claim regarding pharmaceutical companies, but I did have an interesting, somewhat related, experience.
>
> This past fall, after posting information about my own personal experience with SAMe on another bulletin board (I only post on two boards: this one and ASDM. I think, though cannot recall with 100% certainty, that I posted the information on ASDM and not Psychobabble*) I was contacted by a major vitamin manufacturer's research department. They wanted me to discuss my SAMe experience with their research staff and other physicians, and were even more interested in obtaining contact information for my doctors so they could interview them. I
>
> I felt a quite violated. Their contact person was very polite and apologized several times for the "intrusion" of my privacy. They offered some altruistic reasons for their interest, (they were "working with" Columbia U on a study re SAMe's affects on blood sugar and I am a Type I diabetic who had used it for depression) but nevertheless, it felt like I'd been spied upon. Their pitch was that I could help so many other people and perhaps re-direct the study, or be the impetus for new warning labels. For weeks I felt guilty because I turned them down.
>
> I am not so naiive as to think that everything written here (or on any other ng) is not available all over the world, but it still was shocking to me to be contacted by a "corporate" interest in the information.
>
> Anyway, Dr. Bob, I just thought you should know that at least one person here has actually been contacted by a major corporation for business purposes based upon a post to a newsgroup dedicated to mental health.
>
> It is an absolute fact that they were not there to participate in the "mission" of a support board -- they indeed were "lurking" for information of use to their company.
>
> This might have been a fluke...a rare anomoly... but I rather doubt it. Companies invest millions in public relations and market research. Aren't we being rather naiive to think that newsgroups and bulletin boards aren't useful "pools" of pre-qualified prospective buyers and users of their products? The vitamin company obviously thought so.
>
> I presume unregulated vitamin-type manufactuers operate on a different plane than phamaceutical companies in terms of corporate and professional ethics - but then, I don't have any absolute facts to support that presumption (on the opposite end of the pendulum) either.
>
> I don't view this as a real problem, I guess. And even if it is, I don't think there's anything you personally can do to identify them. I do however think we should acknowledge that various business entities are probably here, at least reading. And if they're here reading, the bigger question is: are they also posting information to defend or promote their products? I'm not sure the answer to that question is a definite no.
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> I think they have a right to defend their products with facts. And I think we have a right to share our personal experiences with other people whether that's here on your ng via the internet, or across the fence with our next door neighbor.
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> I would hate to see people reluctant to post negative experiences with certain drugs because the information is anecdotal. It's all anecdotal. If we exclusively want facts, they are readily available to intelligent patients elsewhere. What we get here is intelligent support in a moderated forum. If I can't share with people that stopping Effexor made me extremely ill for five days, then we negate one of our core abilities to help others.
>
> I think people here do a good job of staying "YMMV" on a consistent basis. It almost gets annoying how many times people write various and sundry disclaimers to make sure no-one thinks they are getting personally qualified medical advice.
>
> I always try to offer my own successful experience with Wellbutrin to posters who ask for that info. But I don't try to deter people from sharing any negative experiences with it, either. Effexor gets more bad press than most other ADs. There's a reason for that. It also received some of most vociferous positive testimonials. There's a reason for that, too.
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> It works fabulously for some, and is hell-on-wheels for others. I count on Psychobabble not to intimidate anyone from sharing their experience. What I mean by that is that I hope I didn't break any rules by sharing my negative experience with Effexor here. I'd be quite disappointed in your rules if I did.
>
> FYI and for what it's worth. Your feedback please,
>
> LBWI wouldn't be surprised if people who worked for drug companies followed what went on here. It's important to remember that posts are public and may be of interest to a variety of others for a variety of reasons.
I think that if you feel intruded upon by a company, one option might be to file a complaint. It may just apply to US companies, but it turns out the Better Business Bureau has an Online Complaint System:
http://www.bbb.org/bbbcomplaints/Welcome.asp
"Planting" people here to post with an ulterior motive, however, is very different.
Finally, the problem wasn't posting negative experiences, but posting an unfounded accusation.
Bob
poster:Dr. Bob
thread:1067
URL: http://www.dr-bob.org/babble/admin/20010315/msgs/1067.html