Posted by lissy on January 17, 2001, at 10:04:19
In reply to Re: We're being used as guinea pigs??, posted by JahL on January 17, 2001, at 9:46:55
> >
> > A professor friend of mine phicle and passed it along to me, because he knew I'm into the Internet and support groups.. imagine my surprise when I saw our own Dr. Bob had written an article for some professional journal about us!!!!! he totally quoted people at length in the article, even someone's poem they had posted, in memory of somebody using the dead person's real name. the other names he used were aliases, but he would quote entire messages.
> >
> > I thought this board was for support, not to be written up as guinea pigs for some study!!!!!!!!! is that what we are here?? I feel so used and had to register a new name even though I've been posting here for months.. did he ask us for our permission to use our words??? i checked out his 'privacy policy' and it said nothing about using our posts for his own research. did his university's IRB approve his eavesdropping on this supposed "support" forum and use our own words in a journal publication!?!?!?
> >
> > i'm so upset right now. I can't believe this is happening..
>
> Read the disclaimer @ the top of the page.
>
> In return for what the (genuinely, I believe) altruistic Dr Bob does for us; providing a much-needed forum, & maintaining a therapeutic environment within, I personally don't have a problem with providing a few personal facts for use in his (important, I'm sure) work.
>
> Jah.I am not against this info being used if it were our real names I would be mad but I think it is very important to reach out to as many people as possible who are just getting "the facts" about sedatives and a.ds from the drug companies and doctors and pharmacists. I tell my friends and family about info from this board to try to help them. Why should problems people are having w/ the meds be kept a secret? I have even e-mailed oprah and 60 minutes II and other news shows that they should do a story about the real truth about a.d.s. and other meds and how I also think there is a link between the big obesity problem in america maybe being tied to the fact that more americans are on a.ds more than ever. I think papers like Dr. Bob's could be helpful to people to see real people that have experienced the drugs opinion than from doctors, and pharmacists and from the drug co. people who don't have a clue just scientific mumbo jumbo.
poster:lissy
thread:51847
URL: http://www.dr-bob.org/babble/20010111/msgs/51856.html