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Author Topic: Formal complaint about the CSI connection  (Read 17983 times)

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Offline Cliff

  • Member
  • Posts: 2,645
Formal complaint about the CSI connection
« on: February 15, 2007, 07:35:55 PM »
I was thinking about this yesterday, but then got sidetracked today as I watched the CSI episode and became annoyed by the potential HIV transmission.  I have two complaints with the CSI- NY connection:

1.  People do NOT always assume that this is an open forum.  Yes, guests can view the forums.  However, unless you are connected with HIV somehow, it's not a website you expect to find the average Joe surfing.  Many of us divulge deeply personal information (even about illegal activities) about ourselves.  We rely on the fact that there is some reasonable amount of assurances that the information isn't available to wider public.  Having this site now connected to a MUCH wider audience makes me uncomfortable.

2.  We were provided with no opportunity to express our opinion on the matter.  The announcement came the same day the episode aired.  It seems like everything is always being crammed down our throats.  And any complaints are categorically dismissed.

I personally don't care if Smart and Strong makes money off of me (hell they are already doing it via my participation).  But I do care that there is some acknowledgement that I only speak about very private matters (from sex life to disclosures, from information about my employers, to STIs, to drug usage, etc..), only because I believe this site is a sanctuary of sorts.

Peter, Tim, Andy and Ann (plus the Poz management team)- This was an invasion of our privacy and safety, and for what?  To teach America that people living with HIV are so infectious that even a crime scene investigator can get it from us, after we've died.

We deserve better than this.

Offline Peter Staley

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  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Formal complaint about the CSI connection
« Reply #1 on: February 15, 2007, 10:09:58 PM »
Hey Cliff -- let me start by saying that I hope you really don't feel that "any complaints are categorically dismissed."  I'm not ignoring folks' complaints, and will try to do what I can in reaction to them.

You should also know that this whole deal came down very fast, and I wasn't able to announce it publically until it was finalized, which, believe it or not, wasn't until yesterday afternoon.

Also, I was the only person at AIDSmeds that made the decision to set up the CSI forum in the same area as our current forums.  I had to make this decision quickly, and I didn't discuss it with Tim, Andy or Ann beforehand.  So don't blame them.  It's all on my shoulders.

While I understand your concerns, I'm asking for your patience.  Let's see how this plays out.  Thus far, there's little evidence of CSI fans with no prior HIV interest coming into the other forums, and we have been able to introduce some people living with HIV that watched the show to our site.  That said, I'm not claiming this a success yet, by any means.

I hope we do have a bigger and longer discussion about how public these forums are.  This issue keeps coming up.  I'm not quite sure how to address it yet.  In the larger scheme of things, the additional audience we got last night is a minor blip in how public these forums actually are.  This is an open site on the Internet.  Every sentence in these forums, even if not viewed here, is seen by thousands of people during Google searches.  Automated bots are constantly hitting these forums looking for email addresses.  I just can't stress this enough -- the Internet is the most public place on earth.

I'm rambling now, but I hope we keep discussing this.  I'll have much more to say about this "experiment" once it has a little time under it's belt.  Until then, trust me, you've been heard.

Peter

Offline koi1

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Re: Formal complaint about the CSI connection
« Reply #2 on: February 15, 2007, 10:22:58 PM »
I totally agree. You should know that anything you type enters the public domain. That is why disclosing personal sexual/emotional/and illegal activities should be done with that in mind. No reasonable person can have an expectation of privacy in a public forum, especially if you choose to use your real picture. So everyone, please think before, sayin' that you were somewhere, shoving gerbils up your butt while doing crytal meth and smoking crack, with your friend Sharon Needles.

Rob
« Last Edit: February 15, 2007, 10:27:30 PM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Cliff

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Re: Formal complaint about the CSI connection
« Reply #3 on: February 16, 2007, 02:37:18 AM »
Thanks Peter.  I will look for your overall views of the project once the final episode has cleared.  I accept your explanation for the timing (and that this was your decision only).  However, I do still struggle with the privacy concerns.  I am also interested in hearing the views from the other moderators, since in some sense they were in the same boat as us.

Rob,

Yes, this is a public website.  I know that (that's stating the obvious).  However, you are completely missing the point.  The point is, that we are encouraged to discuss highly sensitive and personal information, because it is the discussion of those topics that generates debate which that results in the spread of information to others.  That's the point of the forums.  Without people discussing such sensitive topics, the forums are meaningless.  If everyone takes down their photos, the forums are damaged.  If people stop using their real names. the forums are damaged.

Not all websites are the same.  Each vary in terms of how likely someone that knows you, will have access to your information.  And many of us take comfort that the very topic of this website provides us with some sort of protection/privacy.

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #4 on: February 16, 2007, 03:12:47 AM »
This is the Internet. I have no expectation of privacy. What isnít obviously available can be had by anyone adept at finding it, and there are plenty of those.

This is a good reminder that what happens online is available to anyone who really wants it, and to use common sense when typing anything on any web site, be that personal financial information or just personal thoughts.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Razorbill

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Re: Formal complaint about the CSI connection
« Reply #5 on: February 16, 2007, 06:08:59 AM »
I totally agree with Cliff.  Thank you for starting this thread.  I disagree with posters who shrug and say "hey it's the internet baby".  Just like HIV, there are levels of risk.  Like Cliff I expect the number of non-hiv related parties at any given time to be low.  Look at the guest numbers - they've been quite high.  People are logging on to this site as users - who have no real interest or caring about HIV I'm sure.  One poster yesterday called itself "crazy4csi" or some such nonsense.  I told a moderator in PM how exposed I suddenly felt.  This site needs to be just a bit under the radar to regular folks. 
    Quite frankly, I smell money behind this.  It is the motivator of all things. 
    On a more esoteric note, I haven't turned on a network channel in years and years, they are programmed out of my line up.  (Tell that to the holy producers).  The shows aren't worth a cup of warm dog spit, and that people focus on them so leads me to wonder about any and all of their motives.  Gee maybe a CSI team can figure it out. And what about poor Stella and that nasty piece of glass.  Tsk. Tsk.
    How many disinterested parties are copying words from other posts to mock them and send them to friends?  How many network boobs are calling their friends and having them come in here to see the HIV "freaks"?  One can only hope no one runs afoul of mean spirited strangers.  Thanks Peter, nice job.

Offline jack

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  • fomerly the loser known as Jake
Re: Formal complaint about the CSI connection
« Reply #6 on: February 16, 2007, 07:39:15 AM »
Cliff is 100% right. I am sure he enjoys my support, but things change, and I guess you shouldn't,t  put anything here if you wouldnt mind seeing it on the front page of your local newspaper. You never know.
Many of us have put down our deepest thoughts,fears,and other personal emotions here because we felt it was such a safe place and it was and probably still is, but its still not a smart thing to do,unless as i said you dont mind  it one the front page of the local newspaper.

Offline skeebo1969

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Re: Formal complaint about the CSI connection
« Reply #7 on: February 16, 2007, 08:02:45 AM »


  I also agree with Cliff on this and find it hard to believe anyone can just comment, "it's just the internet"...  Keep in mind many of us have pictures posted on this website, not just of ourselves either. Some here have very personal pics up.   The likelyhood of someone seeing it is far greater now than it was before the introduction of the new forum. 

  Yes, I know the issue is not just about a picture of someones home or pet animal.  I hope the forums don't lose a level of openess that it has already suffered here recently...  It is a little disappointing to say the least.

  T   
I despise the song Love is in the Air, you should too.

Offline alisenjafi

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  • They say HIV comes from monkeys!
Re: Formal complaint about the CSI connection
« Reply #8 on: February 16, 2007, 08:25:42 AM »
I tend to see both sides of the coin, on one side it is no different then writing into a newspaper and on the other there is highly sensitive stuff that gets written here. I am wondering if aidsmeds might do what other sites do and force one to become a member before they can scan the site.
I was hoping to download the show to see at another time, but it seems CBS is still stuck in the 20th century and a slide show doesn't cut it.
Johnny
"You shut your mouth
how can you say
I go about things the wrong way
I am human and I need to be loved
just like everybody else does"
The Smiths

Offline mjmel

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Re: Formal complaint about the CSI connection
« Reply #9 on: February 16, 2007, 08:27:28 AM »
I held a concept about this site. It has registration, membership, and rules of conduct. Moderators, too. I see it as an open forum to those who are willing to abide by it's guidelines. With this CSI involvement....it could become more public domain.....a GREATER arena. CSI will certainly will draw more attention to the site, now. Of course the jury is still out on how it will affect (effect??) this forum and/or AIDS awareness. 

I am inclined to lean towards the thoughts of Cliff, Razorbill, and Jack.
Yet, I am not disagreeing with what DanielMark and koi1 have stated since there are steadfast rules, otherwise risk, that one must consider when posting via internet.

Peter Staley: You have an EASY BUTTON handy, don't you?  ;)
« Last Edit: February 16, 2007, 10:05:41 AM by mjmel »

Offline Dachshund

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  • Posts: 5,968
Re: Formal complaint about the CSI connection
« Reply #10 on: February 16, 2007, 08:46:41 AM »
Two weeks ago I willingly let Lisa use my last name as a show of support for her Aids/March project...yesterday I asked her to remove my name from that thread. In a matter of days I did not feel comfortable with my last name being viewed by so many new, additional strangers. The reason for my discomfort was the addition of the CSI forum. I hope it works out for the best for people living with HIV...personally to me it all smacks of crass commercialism and dilutes the personal nature of Aidsmeds. To me it advertises to each and every person living with HIV that we have become just another commodity in a very lucrative niche market. In that alone we are just like everyone else.


p.s. though it pains me to admit it, on this topic I have to agree with Cliff. ;)
« Last Edit: February 16, 2007, 09:04:53 AM by Dachshund »

Offline Andy Velez

  • Global Moderator
  • Member
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Re: Formal complaint about the CSI connection
« Reply #11 on: February 16, 2007, 09:08:57 AM »
Cliff, you have articulated a well founded concern which I know others here share.

I don't have any quick answer about this. What I can say is that the specifics you and others have raised are ones which we moderators have been discussing and about which we feel deeply as well.

The power of this Forum is grounded in trust and safety. We are absolutely committed to maintaining it so. It's too soon to see how this particular experience is going to play out.

We're in solidarity with you and we'll do everything in our power to continue to honor the trust you and all our members have placed in us.

Sincerely,
   
Andy Velez

Offline RapidRod

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  • Posts: 15,288
Re: Formal complaint about the CSI connection
« Reply #12 on: February 16, 2007, 09:11:15 AM »
Johnny, you can watch the show on the internet. Peter posted the site yesterday. That's where I watched it.

http://www.cbs.com/innertube/player.php?cat=115222&vid=&format=&auto=1
« Last Edit: February 16, 2007, 09:36:05 AM by RapidRod »

Offline Lis

  • Member
  • Posts: 595
Re: Formal complaint about the CSI connection
« Reply #13 on: February 16, 2007, 09:23:42 AM »
I agree with Cliff...

lisbeth
poz 1986....

Offline koi1

  • Member
  • Posts: 713
Re: Formal complaint about the CSI connection
« Reply #14 on: February 16, 2007, 09:36:59 AM »
Cliff,

I did not mean that I didn't think it would be nice if this were a private or semi private forum. However this is a website, one that is out to make money, and keeping nice and intimate would not serve to make it economically viable. I  respect the business aspect since bills do have to be paid to remain operational. Remember that though it is nice to put a picture to a face (most of the time), it is not a requirement to participate. Making a poignant post does not require a personal pic.
 People, guests or otherwise, know we are real, with or without it. I have put up deeply personal narratives and facts about my life, but I have also been aware that my privacy cannot always be guaranteed. As the people who run this website do have technological abiltiy to find out where the posts are coming from. I don't think they will use it to hurt me. That is the one aspect that I am still naive about, until they prove me wrong.

Rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline Tim Horn

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  • Posts: 799
Re: Formal complaint about the CSI connection
« Reply #15 on: February 16, 2007, 09:44:43 AM »
I'd like to add a few thoughts on "motives," if I may...

One of the things we've always worked for is greater awareness regarding AIDSmeds.com -- and, over the past year, its partnership with POZ -- "out there" to reach people who may benefit from the informational and support services we offer.  We've advertised AIDSmeds.com in various gay, HIV, and mainstream media outlets and strive to be a top-ranked HIV site via search engines.  

Partnering with the Kaiser Family Foundation -- and with it, CBS -- was yet another avenue taken to draw attention to AIDSmeds.com... using the Forums as a gateway to everything we offer here.  I can assure you that $$$$ are not being made off of this partnership... in fact, industry banner ads in the CSI Forum needed to be stopped to placate CBS contractual issues.  

We never intended the Forums to be of a single-family mindset, in which we'd build up a healthy membership and then shut the doors to newcomers.  We've always strived to keep the doors open -- and, indeed, put a big neon "WELCOME" sign over the doors -- to anyone in need.  Yes, this does result in a lot of unwanted attention -- we've definitely had our share of gawkers, worried wells, and riff-raff only hoping to start trouble -- but this is why we've kept these Forums heavily moderated.    

The Forums -- with their intent on being open to anyone and everyone with genuine HIV-related concerns -- will never be able to guarantee the same safety one might find in a support group or more intimate, private setting.  However, for the amount of exposure these Forums do get, I do think everyone -- moderators and members included -- have done a dynamite job keeping this space safe in light of its mission.  

It seems as if we've lost good folks as the Forums continue to expand. This is terribly unfortunate and I wish it wasn't so.  At the same time, we've gained many members who seem to benefiting nicely from this space and site.  Personally, I don't think this is such a horrible thing.

Tim Horn

Offline Peter Staley

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  • Posts: 1,337
  • Founder & Advisory Editor, AIDSmeds.com
    • AIDSmeds.com
Re: Formal complaint about the CSI connection
« Reply #16 on: February 16, 2007, 10:19:54 AM »
Razorbill, jack, skeebo1969, Dachshund, mjmel, and Lis:

Let me preface this by saying that my final opinion on how this whole thing balances out -- the pros & cons, and was it worth it -- won't be made until some time has passed.

But let me explain a what I know thus far.  I had the choice of creating an entirely different forum (with a different URL, like csiforum.poz.com) for this collaboration with CSI/Kaiser, but I thought there were some major downsides to that option.  A big one is the headache for everyone in dealing with two separate forums -- everyone would have to create new, 2nd accounts, and the moderators would have to monitor 2 separate forums.  Also, it was my hope that among CSI's 17 million viewers, there would be plenty of pozzies watching as well, and they might find our forums this way. 

We also set things up so that almost all of the traffic goes directly into the CSI forum.  The links from knowhivaids.org and CSI:NY's website go directly into the CSI forum, NOT our forums' home page.  The vast majority of fans that ended up here did just that -- they never left the CSI forum.  We also included the CSI:NY logo at the top of the forums' home page for those that registered and returned, so that they could quickly find their way back into the CSI forum.  In addition, the CSI forum has it's own "look," very different from the other forums (with the CSI logo, Stella's pic, etc.).  All of this seems to be working well.

There were 2 potential upsides to adding the CSI forum to our current list of forums.  It leaves open the option for any pozzies that find us through the CSI plug to easily join our other forums, without the confusion of having to create yet another account. For me, the biggest upside is that it makes it easy for our regulars to participate in the CSI forum.  Their participation thus far has been what I expected -- amazing.  They are doing an invaluable service of educating regular CSI fans about the reality of HIV/AIDS.  Maybe even more importantly, they are giving the CSI creator and his writing team an EARFUL about how they're handling their HIV storyline.  We have heard through the grapevine that their staff is quite alarmed by what they are reading, and that it could indeed affect the plot line.  In other words, because of the active participation of our regulars, the CSI forum is becoming a form of activism.

All of that said, the downsides of my decision are THERE, and real.  I'm NOT ignoring any of the complaints thus far.  I'm trying my best to learn from them, and they will definitely way heavily in any future decisions made.

Peter

Offline gerry

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  • Joined AM Feb 2003
Re: Formal complaint about the CSI connection
« Reply #17 on: February 16, 2007, 10:24:31 AM »
The power of this Forum is grounded in trust and safety.

I think many members are struggling with whether or not this move represented to them a breach of one or both.  That's one thing that each would have to decide for themselves.  While I do believe the move was well-intentioned, many were caught totally off guard by its suddenness.  Like any major decision (and I classify this one as such), there would be unintended consequences, unfortunately. 

Offline NycJoe

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  • Posts: 244
Re: Formal complaint about the CSI connection
« Reply #18 on: February 16, 2007, 11:00:00 AM »
First of all, anyone whom admits to doing something illegal even in a personal email is a fool.  Once it is on the net...bam its out there for anyone and everyone to see.  Secondly posting a picture is optional.  That's what is so great about this site.  You can chose to be anonymous or not.  It's a choice.  If I posted my picture on here I am sure I would have someone I know eventually find me on here and I know that.  I don't believe this should be some shut off community.  I hope that many people visit this site and learn much from it.  If it stops even one person from becoming HIV+ than the "intrusion" is well worth it to me.  Eduacation is paramount!

Offline mjmel

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Re: Formal complaint about the CSI connection
« Reply #19 on: February 16, 2007, 11:14:06 AM »
Peter Staley, Thank you for your words, your time and efforts. Thanks for honesty & reassurances.

Offline poet

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  • Poet living and working in Central Maine
Re: Formal complaint about the CSI connection
« Reply #20 on: February 16, 2007, 11:33:05 AM »
Being hiv positive is and always has been a balancing act, in part deciding to what degree you yourself become the face of hiv/aids.  I have heard a support group member state absolutely that he would never enter an office which, instead of using initials, read Aids Support Group of Cape Cod.  If you are in a formal, a.s.o. run group, you most likely agreed to a list of terms and conditions about what would be said, about contacting members, etc.  But this is also part of the history (to drag that in) of the hiv/aids movement, the concept of not fuming at home but participating in a very public Act-Up demonstration, even disobeying police officers and being arrested to make a point.  So there is this bar, stretching from Act-Up to a support group and these forums, because they are public and not private, sit farther to the outside than the inside. 

One way of watching out for oneself is watching language.  We each have a choice of stating that I did or I feel or I whatever.  We can also post, at least during the CSI presence, I would imagine that or I heard that someone or knew someone who or make statements without 'I' at all, the 'I' being inferred.  Like anything else, the general public out there will lose interest in hiv/aids once the CSI story concludes.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Ihavehope

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Re: Formal complaint about the CSI connection
« Reply #21 on: February 16, 2007, 11:38:17 AM »
It feels like a group 0f 20 adult strangers coming with beer on one hand and a girl's b-day gift on the other hand to a 7 year old boy's bithday party where the mom only planned 20 guest (children only) but the daddy decided to invite his collegues from work and didn't tell his wife until the day of the party. Then the mommy yells at the daddy for inviting adults at a kid's birthday party and the daddy tells her that it's his house and his son too, and their is plenty of food to feed the guest. It's awkward and inconsiderate.
Infected: April 2005
12/6/06 - Diagnosed HIV positive
12/19/06 - CD4 = 240  22% VL = 26,300
1/4/07 - CD4 = 200 16% VL = ?
2/9/07 = Started Kaletra/Truvada
3/13/07 = CD4 = 386 22% VL ?

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #22 on: February 16, 2007, 11:46:52 AM »

We never intended the Forums to be of a single-family mindset, in which we'd build up a healthy membership and then shut the doors to newcomers.  We've always strived to keep the doors open -- and, indeed, put a big neon "WELCOME" sign over the doors -- to anyone in need.  Yes, this does result in a lot of unwanted attention -- we've definitely had our share of gawkers, worried wells, and riff-raff only hoping to start trouble -- but this is why we've kept these Forums heavily moderated.    

The Forums -- with their intent on being open to anyone and everyone with genuine HIV-related concerns -- will never be able to guarantee the same safety one might find in a support group or more intimate, private setting.  However, for the amount of exposure these Forums do get, I do think everyone -- moderators and members included -- have done a dynamite job keeping this space safe in light of its mission.  

Tim Horn

I like what Tim has to say on the subject.   I think it's selfish to have such an attitude that ok we're on the lifeboat, the Hell with the others!  When I was diagnosed I didn't know about this site and didn't find it till sometime later.

No matter what arguement you make as others have pointed out.  This is a website on the internet.   At first I wondered why there wasn't more notice to the members about the CSI forumn; however, now it's clear to me that had anything been suggested ahead of time this innovative project would never have gotten off the ground.

If privacy is a concern then take some precautions.   Simple as that!  This website can't just cater to the existing members and then go on lockdown.

With any new group it's always good to have some new blood so to speak.   I enjoy meeting new people who bring new ideas whatever they are.

It's interesting to me just how few people are willing to expose themselves to benefit others.   The more of us that speak out and reach out the better for all of us!

Wesley

« Last Edit: February 16, 2007, 11:48:56 AM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Robert

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Re: Formal complaint about the CSI connection
« Reply #23 on: February 16, 2007, 11:59:19 AM »
As Andy says, this forum is grounded in trust and honesty.  I think the foundation is still good and strong.  We've always had an open door policy and those looking for safety, and guidance and understanding can find it here.  People who come here to troll will get bored very quickly and leave.  That's fine.  Those people don't bother me or affect what I have to say or how I say it. 

robert
..........

Offline Peter Staley

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Re: Formal complaint about the CSI connection
« Reply #24 on: February 16, 2007, 12:20:07 PM »
To bring some more perspective of how the CSI forum, and it's audience, changes the privacy dynamic of these forums, consider this:

1)  Since the day these forums were launched in 2001, a large MAJORITY of both visitors and registered members in these forums have been HIV NEGATIVE (mostly worried wells).

2)  From the get-go, we created a special forum for them ("Am I Infected," formerly "Fears of.."), and placed that forum at the top of the list (so that they'd be encouraged to remain in that forum).

3)  We have used heavy moderation tactics to make these forums the safest ones on the Web for people living with HIV.

4)  The number of HIV negative people that have found these forums using Google and other search engines FAR OUTNUMBERS the current influx of CSI fans. And just like the "Am I Infected" forum, we have done a really good job of steering everyone to where they need to be, and almost all of the CSI fans have been very respectful, and stayed in the CSI forum.

No one has ever complained about the Am I Infected forum from a privacy point of view, or that the Am I visitors and members have made the other forums feel invaded or unsafe.

If the CSI forum is such a threat, should I close it?  And if so, then why shouldn't I also close the Am I Infected forum?  Aren't they both providing a wonderful place to educate HIV negative individuals?

Peter

« Last Edit: February 16, 2007, 12:22:09 PM by Peter Staley »

Offline Dachshund

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Re: Formal complaint about the CSI connection
« Reply #25 on: February 16, 2007, 12:56:28 PM »
I don't know why, but it seems to me comparing Am I to CSI is an apples and oranges kind of argument and yes the statistical numbers back up your arguments. However, the sheer number of hits to a site should not outweigh the thoughts and feelings of the core member, day to day user of aidsmeds.

That being said I am under no illusion about opinions. Like something else we all have in common, everybody has one. For that reason I take what I need or want and leave the rest behind. I present my leftist, anti-corporatist, view of things...if folks agree fine...if not, so be it. We are all non-voting guests of this website...the only real choice I have if I don't like things is I can leave...so far no choices made by management has pissed me off to the point of leaving...much to the dismay of others I'm sure. ;D

Hopefully, next up HIV American Idol.

Offline ChaplinGuy

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Re: Formal complaint about the CSI connection
« Reply #26 on: February 16, 2007, 01:09:49 PM »

As someone who works in PR, bravo to CBS for their marketing savvy and bravo Peter for seeing the opportunity to get more people going to poz.com. A win-win in my opinion.

Offline skeebo1969

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Re: Formal complaint about the CSI connection
« Reply #27 on: February 16, 2007, 03:50:03 PM »
Aren't they both providing a wonderful place to educate HIV negative individuals?

Peter

 Well I guess worried well membership will probably increase since CSI came up with such a lame reason for infection..  Steer them here and we can educate them properly I suppose.   

  Dachshund,

     It's funny you bring up American Idol....   I think what they should do is put a spot of blood on the door knob before each singer goes in to sing before the judges.   Let the camera slowly pan in and out on the spot.   Instead of Simon bashing them on their singing skills or lack of... he can tell them they have just possibly been infected with the HIV virus!  Then at the end of the show this website can be flashed as the credits roll....   You wanna educate????  This is the way!!!  Viewership for American Idol is so much greater!!   

     Dachsh....  I apologize if this is even remotely close to your ideas on HIV American Idol.   
I despise the song Love is in the Air, you should too.

Offline manchesteruk

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Re: Formal complaint about the CSI connection
« Reply #28 on: February 16, 2007, 03:58:56 PM »
Two weeks ago I willingly let Lisa use my last name as a show of support for her Aids/March project...yesterday I asked her to remove my name from that thread. In a matter of days I did not feel comfortable with my last name being viewed by so many new, additional strangers. The reason for my discomfort was the addition of the CSI forum. I hope it works out for the best for people living with HIV...personally to me it all smacks of crass commercialism and dilutes the personal nature of Aidsmeds. To me it advertises to each and every person living with HIV that we have become just another commodity in a very lucrative niche market. In that alone we are just like everyone else.

This is the exact reason I removed my picture I just don't feel comfortable having it on here anymore.
Diagnosed 11/05

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Offline Dachshund

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Re: Formal complaint about the CSI connection
« Reply #29 on: February 16, 2007, 04:08:18 PM »
Well I guess worried well membership will probably increase since CSI came up with such a lame reason for infection..  Steer them here and we can educate them properly I suppose.   

  Dachshund,

     It's funny you bring up American Idol....   I think what they should do is put a spot of blood on the door knob before each singer goes in to sing before the judges.   Let the camera slowly pan in and out on the spot.   Instead of Simon bashing them on their singing skills or lack of... he can tell them they have just possibly been infected with the HIV virus!  Then at the end of the show this website can be flashed as the credits roll....   You wanna educate????  This is the way!!!  Viewership for American Idol is so much greater!!   

     Dachsh....  I apologize if this is even remotely close to your ideas on HIV American Idol.   




I gladly leave all details and rights to America's HIV Idol to you...please feel free to use my very, very, tongue in cheek episode. ;D







Offline manchesteruk

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Re: Formal complaint about the CSI connection
« Reply #30 on: February 16, 2007, 04:11:40 PM »
If the CSI forum is such a threat, should I close it?  And if so, then why shouldn't I also close the Am I Infected forum?  Aren't they both providing a wonderful place to educate HIV negative individuals?

Peter

I just wanted to add I was always under the impression the Living With HIV forum was for well people living with HIV! I thought it was a support forum not a place to educate negative individuals.  Am I the only person who thought this?
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #31 on: February 16, 2007, 04:22:28 PM »
The more of us that speak out and reach out the better for all of us!

Amen to that, Wesley! It's called community building.

Posting with discretion on the Internet is only common sense. If you're concerned about it, sensitive personal info could be kept for Private Messages or e-mail, although like I inferred in my previous post, there is no guarantee of privacy on the Internet. It's just a fact of life whenever you go online.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Razorbill

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Re: Formal complaint about the CSI connection
« Reply #32 on: February 16, 2007, 05:29:44 PM »
Hey!  Nobody who is uncomfortable with the CSI link is advocating a closed web site, us against them, HIV only place.  Where did you read that?  It is by nature a place where people come to vent, to discuss intimate problems etc.  What, I have to discuss every problem one on one with each member in PM cause it's the internet?  Levels of risk, exposure was the point, not closed off individuals.  Geesh.

Offline Lis

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Re: Formal complaint about the CSI connection
« Reply #33 on: February 16, 2007, 07:08:51 PM »
I found this site, and I found people like me... i disclosed my deepest darkest.. I found support... I disclosed the vomit and shit... I got support.. we planned a mini gathering... and i met the most WONDERFUL HUMANS!!!!  I remember about a year and a half ago putting my WHOLE story on line...  All the filth of being molested... the fact that i married a gay man and had a baby with him... the fact that i met a man that loved the son my X couldn't.. and adopted him... we later (9 years) had a daughter of our own.... she is now 11...  I miss knowing all of you.. I know that it has more to do with me then you... when I cry, when i laugh...I knew that there were people to relate... I am grateful for the support... but not so much with the commercialism..
« Last Edit: February 16, 2007, 07:12:54 PM by Lis »
poz 1986....

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #34 on: February 16, 2007, 07:17:08 PM »
I just wanted to add I was always under the impression the Living With HIV forum was for well people living with HIV! I thought it was a support forum not a place to educate negative individuals.  Am I the only person who thought this?

The Living With forum is for people living with hiv. It's one of thirteen forums on this site and you're right, it's not the place to educate negative individuals. That's what the Am I Infected and Someone I Care About has HIV forums are for. At the top of the CSI forum there is a Welcome Thread which lists forum posting guidlines. The guideline at the top of the list states:

Quote
With the exception of the Am I Infected?, Someone I Care About Has HIV, and Off Topic Forums, the Forums are intended for people diagnosed with HIV.  If you are negative or unaware of your HIV status, please refrain from posting messages or questions in those Forums.


We will not allow CSI posters to post where ever they feel like. So far we've not had a problem with this at all.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #35 on: February 16, 2007, 07:35:52 PM »
I have to admit I was very upset when I first heard about the CSI forum and I was deeply worried about its impact on these forums. I thought all hell was going to break loose. Thankfully, that hasn't happened and we are seeing no evidence that CSI fans are spending any large amounts of time in the rest of the forums. Believe me, I've been looking.

These forums mean a lot to me and I feel very protective of this place. I know all too well it's the only place many people have to turn to for support. I'm one of those people and I've made all but a few weeks of my journey with hiv right here in these pages. I get why some people feel upset. I get it right in the pit of my stomach. 

Peter knew how strongly I felt and told me I didn't have to moderate the new forum if I didn't want to, but that wasn't an option for me. My aim as a moderator has always been to keep this place safe for people like me, people who were isolated, whether they be in the middle of Podunkville or the Castro. I'm going to be here helping to make sure this this place stays safe, even in the middle of a crappy CSI storyline.

I also know that Peter has had the very best of intentions in allowing this site to host the CSI forum. Peter is an activist and this is activism in action. If we keep working on eradicating stigma and correcting misinformation in the media, there will come a day when none of us will have to worry about being recognised on an hiv support website. Think about it.

Ann


(edit... damn typo!)
« Last Edit: February 16, 2007, 07:38:10 PM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #36 on: February 16, 2007, 09:05:05 PM »
A forum member PMd me to ask me to expand on a couple issues - namely:

Quote
1.  Not everyone has the luxury to put themselves out there as an activist.

2.  Whether CSI visitors post in other threads, (while a measurable goal you all are trying to define as the issue) doesn't address the vulnerability factor.  Inviting 17 million people to visit this web site and potentially stumble on intensely personal information is the issue.

And I honestly don't know what to say. The thing is, I do get it. I'm living it. I have the same fears. I'm somewhat open about my status where I live, but I'm not totally out, not by any means. It took me a long time to screw up the courage to post my photo here. I was petrified when I first started my blog. The CSI forum brought all those fears back to me in stark relief.

A good forum friend of mine said to me "you're never alone". That's very true but that's only true because of this website. This forum is a lifeline for me and I know I'm not the only person in that position. I'm going through this right beside all of you. I'm a member here too.

I will not presume to tell any of you how you should feel about this new dimension to the forum. All I can do is tell you how I'm attempting to cope with it and that is through doing everything in my power to see that the disruption is held to a minimum. I can't stop visitors from reading your posts. I can't stop them from reading my posts either. All I can do is trust in the greater goodness of people's hearts to learn and treat us all with respect. I don't mean that only in the sense of what or where people post - I mean that in the sense of repercussions in the outside world as well. 

We do have a wonderful opportunity here. It's scary at the same time. I know. I don't know about you, but I'm going to make the best of the situation, despite my fears. So far many of my fears have proved unfounded and I'm growing more and more optimistic that all our fears will be unfounded.


Ann
« Last Edit: February 16, 2007, 09:09:32 PM by Ann »
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Lis

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Re: Formal complaint about the CSI connection
« Reply #37 on: February 16, 2007, 09:13:40 PM »
Ann... you are my rock!!! 

thank you!
poz 1986....

Offline gerry

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Re: Formal complaint about the CSI connection
« Reply #38 on: February 16, 2007, 09:27:25 PM »
I'm going to be here helping to make sure this this place stays safe, even in the middle of a crappy CSI storyline.

I also know that Peter has had the very best of intentions in allowing this site to host the CSI forum. Peter is an activist and this is activism in action. If we keep working on eradicating stigma and correcting misinformation in the media, there will come a day when none of us will have to worry about being recognised on an hiv support website. Think about it.

Ann

Hi Ann,

I think pretty much all the regulars who wants to chime in have expressed how crappy the CSI storyline is.  THE more interesting storyline, in my opinion, is how this experiment plays out in the future dynamics of these forums.  Unscripted and all.  I think this is something we will really all learn from, no matter which direction it goes.

One thing to keep in mind in the course of all these is we may not really know the true impact of this event with other regulars who are among the dissenters but who have chosen to keep silent simply because they do not wish to attract unwanted attention during this high traffic times.  We'll just have to wait and see...

Peace,
Gerry

Offline Nico

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Re: Formal complaint about the CSI connection
« Reply #39 on: February 16, 2007, 09:38:44 PM »
Ann.
Thank you as well.  I have been silent on this subject and torn.  

1.  I do not own this site and therefore as Peter stated "he" not you made the decision according to his post.  He founded this site and I guess he can do whatever he pleases.  We can all go someplace else.

2.  If I did own this site, I would not have made such access.

3.  To quote Lis:
I found this site, and I found people like me... i disclosed my deepest darkest.. I found support... I disclosed the vomit and shit... I got support.. we planned a mini gathering... and i met the most WONDERFUL HUMANS!!!!  I remember about a year and a half ago putting my WHOLE story on line...  All the filth of being molested... the fact that i married a gay man and had a baby with him... the fact that i met a man that loved the son my X couldn't.. and adopted him... we later (9 years) had a daughter of our own.... she is now 11...  I miss knowing all of you.. I know that it has more to do with me then you... when I cry, when i laugh...I knew that there were people to relate... I am grateful for the support... but not so much with the commercialism..

I am not Lis and her life is not mine, but I can relate and to opening up "me" on this site like Lis.  It took me over two years to get some "balls"  to do it and share.

That is all I want to say.  I value the friends I have met in cyber here and have been able to help me  to creep out from under a dark rock that has covered me for years.  I just don't want to feel the need to retreat underneath it.

Roger

Edit: one typo
« Last Edit: February 16, 2007, 09:40:43 PM by Nico »
Poz since 1990.

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #40 on: February 16, 2007, 10:15:22 PM »

One thing to keep in mind in the course of all these is we may not really know the true impact of this event with other regulars who are among the dissenters but who have chosen to keep silent simply because they do not wish to attract unwanted attention during this high traffic times.  We'll just have to wait and see...

Peace,
Gerry

Absolutely, Gerry, I am aware that some forum members have been quiet these past few days for that very reason. And that does bother me, very much. The last thing I want to come from this is having isolated people being further isolated. I don't know what we can do about it either. This has been my biggest fear all along - that some members will disappear out of fear and lose their mainstay of support.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #41 on: February 16, 2007, 10:18:45 PM »
I value the friends I have met in cyber here and have been able to help me  to creep out from under a dark rock that has covered me for years.  I just don't want to feel the need to retreat underneath it.


Please don't retreat Roger, we value you too.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline jkinatl2

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Re: Formal complaint about the CSI connection
« Reply #42 on: February 16, 2007, 10:39:37 PM »
Not to put too fine a point on it, and not meaning to rehash old issues, but there are people who are members of this site who are mentally unstable and unbalanced, due to HIV, meds, drugs or booze. Their bullying of other members helped create a singularly unsafe environment here for a long time.

While it is legitimate to ponder the influence of external forces on the online community, we should be aware that having HIV and belonging to this forum does not exempt people from doing serious psychological or legal damage to others, should they choose to do so.

Anyone who shares intimate details of his/her life does so, on the best of days, at his/her own peril. Any flock this large is bound to have wolves, and having HIV does not make a person a saint - or relieve them of their innate sociopathy.

I personally think anyone should reconsider offering up any information that could be used against them. This is not a "safe" place in that regard, and never has been. And the greatest threats to the illusion of safety and community come not from outside, but from right here.

Trust me, I learned that lesson the hard way.

"Many people, especially in the gay community, turn to oral sex as a safer alternative in the age of AIDS. And with HIV rates rising, people need to remember that oral sex is safer sex. It's a reasonable alternative."

-Kimberly Page-Shafer, PhD, MPH

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Online GSOgymrat

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Re: Formal complaint about the CSI connection
« Reply #43 on: February 16, 2007, 10:55:54 PM »
Of course people who don't want their information out their can go back and delete their posts and pictures. Also people can participate in the forums without giving their names or identifying information.

Offline Tucsonwoody

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Re: Formal complaint about the CSI connection
« Reply #44 on: February 17, 2007, 12:32:32 AM »
Whether valid or not - I'm one of those who felt the need to stop posting and to tighten up on having a picture of myself here and for me it wasn't a matter of greater concern that I'd be "outed" more than I would have been with out the CSI thing, at this point I am such a hermit no one knows me anyway.  Oh - just a note, I haven't even read all the posts in the Stella forum so I'm sure most of what I have to say has already been said there, but gotta add my little bit.

For me it was a combination of thoughts like - okay so this is only the first show, what impact on visits will the future shows have?  What will the discussions in mainstream media have? While moderators can do a great job in these forums, they sure can't control what any blogger or person/organization has to say anywhere else. Will that cause even more observation?  If this setup with CSI can happen, then what show will be next and the one after that and the one after that.....?  What about all the previous posts I've made (even knowing this is the www.anybody can look internet).  If one of the goals was providing information to others and some or a lot of the vets (and I am not a vet) clam up, what's been accomplished?

I'd also like to suggest that in the future less emphasis be put on the "safe and secure" enviroment aspect that is so often stated, which I think tends to make people let their guard down and open up more than we should, even though that openess provides a more honest picture.  It might be better to remind everyone that at anytime anything you say can and may be used against you as the say so often over in CSI land.

After reading the interview with the producer I came away with the impression this was more about what it could do for him then it could do for anyone else.  He says "For me, itís this. When Anthony Zuiker goes down in the books as somebody in Hollywood that was a leader in the industry, I want people to look back and say, ďYou know what? He did it right.Ē

He says "I am HIV negative and thereís not an individual that I know, nor something thatís happened in my life thatís directly linked to HIV."  He doesn't know one individual? yikes! 

Also - did I see where there are 17 million viewers? - He says "We reach six to seven million people every week with the television show"  Later he says "The show will air in front of 18 million people" where did I misread which number it is?  And I was glad to know "We really had to make sure that the subject of HIV/AIDS was presented in a way that was entertaining" Never realized HIV/AIDS could be entertaining.

"Perhaps we can package these stories, sell them and have the proceeds go to Kaiser. It would be so cool, right? Like the day we made history. BOOM. And all of a sudden weíd be selling this book of stories of people living with HIV, with all the profits going to the foundation. That would be so cool. It also might make for a powerful forward written by myself. - Yea that forward would make it a best seller no doubt.


Oh well - posting my thoughts and reading about the upheaval this has caused has only made me more mentally tired again so I'll stop now.  Damn wouldn't ya know I just stopped taking Effexor a few days ago! Or maybe have a nice  big brick or butter and then take my Atripla.
« Last Edit: February 17, 2007, 01:12:15 AM by Tucsonwoody »
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #45 on: February 17, 2007, 01:27:47 AM »
Not to put too fine a point on it, and not meaning to rehash old issues, but there are people who are members of this site who are mentally unstable and unbalanced, due to HIV, meds, drugs or booze. Their bullying of other members helped create a singularly unsafe environment here for a long time.
While it is legitimate to ponder the influence of external forces on the online community, we should be aware that having HIV and belonging to this forum does not exempt people from doing serious psychological or legal damage to others, should they choose to do so.

Anyone who shares intimate details of his/her life does so, on the best of days, at his/her own peril. Any flock this large is bound to have wolves, and having HIV does not make a person a saint - or relieve them of their innate sociopathy.

I personally think anyone should reconsider offering up any information that could be used against them. This is not a "safe" place in that regard, and never has been. And the greatest threats to the illusion of safety and community come not from outside, but from right here.

Trust me, I learned that lesson the hard way.



I have to concur with this!   There are mental health websites for those who might require both!    And, just so ya know those aren't secure either!

THIS IS A WEBSITE ON THE INTERNET!   Regardless of personal feelings it is open to the public, and even if it were private it would not be 100% safe or secure.

One member was basically criticizing the founder of this site because they don't agree with the CSI forumn for whatever reason.   That person feelings aren't to be discounted.   However, it was stated that a certain person founded this site.  So, clearly that person can do with it what he or the group of founders choose.

I've been paying close attention to this because I started my own group which was set to private.   Today, I opened it up to complete public access because it's in the best intererst of the majority regardless of what a few people think.   My group is nowhere near the size of this one, nor as organized, but I did start it and it took a Hell of a lot of work to get it to the point it was.    I spent hours upon hours trying to make it fit everyone's needs.   It was a grass roots deal and I made up things as I went.   

My suggestion to critics would be that you try it.  Moderate everything!  Do everything!  Start your own group and see how well you do.   It's a LOT of work and if you think you can do better on your own then give it a whirl.

I don't know the founders of this group.   I'm assuming they include Ann, Peter, Andy and Tim.    Don't know any of em, but what I can say is that I think that before you criticize thier efforts consider walking in thier shoes for a minute.     

Whether I agree with them or not I do respect all the work they've done because I know the magnitude of managing a site of this size with so many different personalities.

Without even knowing these people I've spent enough time on here personally to know they have done the best job they can and I for one admire all of their efforts and hard work.   I'm most definitely not an Ass Kisser and those that know me know I tend to tell it like it is!   

For all those complaining I have a suggestion.   If you are going to complain, you will gain credibility by at very least adding some legitimate suggestions or ideas to accomplish what you hope to achieve.   Otherwise, what you say is completely baseless and pointless and you have zero creditbility.

If I were the founders and moderators having to deal with some of the bitter and irrational commentary targeted at me personally I'd just start eliminating the BAD APPLES trying to ROT the Bunch!   I wouldn't put up with this amount of whining for a few that will never be satisfied.  So, guess you're lucky I am not moderating eh?

I've repeatedly witnessed Rock throwing and innuendos of unethical behavior of certain key people with zero to back it up.   

You know what I haven't seen?   I haven't seen anyone thanking or complimenting those key people in their efforts for trying to make a difference for all of us.   

I'm Sorry!   But I just think that is very wrong.

Wesley


« Last Edit: February 17, 2007, 01:29:21 AM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline lydgate

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Re: Formal complaint about the CSI connection
« Reply #46 on: February 17, 2007, 01:56:50 AM »
Just two things I'd like to add:

1. Vulnerability to "exposure." There are many people using these forums, both within the US and outside, who are not US citizens. 'Nuff said.

2. Privacy and copyright. I posted a reply in a thread started by Matt (newt) which is peripherally relevant here as well, so I'm cross-posting. It's reply #28 on this thread. http://forums.poz.com/index.php?topic=9034.0

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #47 on: February 17, 2007, 02:08:23 AM »
I don't understand where someone resides has to do with anything? 

Can you please explain?   

The internet is not something unique to the United States! 



Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline lydgate

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Re: Formal complaint about the CSI connection
« Reply #48 on: February 17, 2007, 02:23:32 AM »
I don't understand where someone resides has to do with anything? 

Can you please explain?   

The internet is not something unique to the United States! 



Wes, please allow me the elementary courtesy of not assuming that I'm an idiot. Id est, that until you informed me, in bold, I was unaware that the Internet is unique to the United States.

The point is that being HIV positive was (until recently) grounds for barring non-citizens from entering the US. In other words: a lot of HIV positive folk who are not citizens living in the US were (and possibly still are) "illegal alens." The current lifting of the entry ban by the Bush administration applies, I believe, only to short-term "tourist" visits. Positive status is still a reason for banning a person from residency and citizenship. And possibly from being an intermediate-term student or worker.

So, where someone resides, and what passport he or she holds, does in fact have something to do with the issue at hand.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #49 on: February 17, 2007, 02:29:13 AM »
Hi Jay,

This thread is about the temporary CSI forum. 

How does this have anything to do with passports or entry into the United States?

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline lydgate

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Re: Formal complaint about the CSI connection
« Reply #50 on: February 17, 2007, 02:42:25 AM »
Hi Jay,

This thread is about the temporary CSI forum. 

How does this have anything to do with passports or entry into the United States?

Wesley

Because this thread is not simply about the temporary CSI forum; it brings up a host of other issues as well. As the original poster, Cliff, points out -- as do many others -- it's about privacy as well. 'Nuff said, again. (And I'd like to add that I understand and appreciate your comments on the Internet being a public space.) If you want to continue this conversation, PM me.

Jay
Her finely-touched spirit had still its fine issues, though they were not widely visible. Her full nature, like that river of which Cyrus broke the strength, spent itself in channels which had no great name on the earth. But the effect of her being on those around her was incalculably diffusive: for the growing good of the world is partly dependent on unhistoric acts; and that things are not so ill with you and me as they might have been, is half owing to the number who lived faithfully a hidden life, and rest in unvisited tombs.

George Eliot, Middlemarch, final paragraph

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #51 on: February 17, 2007, 02:48:50 AM »
Jay,

There are a host of issues involved, but residency isn't one of them!

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline northernguy

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Re: Formal complaint about the CSI connection
« Reply #52 on: February 17, 2007, 03:23:15 AM »
Given that many people are struggling with disclosure issues, I am surprised that advance warning wasn't given for people who may have wanted to remove their avatars etc.  What if you were just inadvertently "outed" to CSI watching coworker?
Apr 28/06 cd4 600 vl 10,600 cd% 25
Nov 8/09 cd4 510 vl 49,5000 cd% 16
Jan 16/10 cd4 660 vl 54,309 cd% 16
Feb 17/10 Started Atripla
Mar 7/10 cd4 710 vl 1,076 cd% 21
Apr 18/10 cd4 920 vl 268 cd% 28
Jun 19/10 cd4 450 vl 60 cd% 25
Aug 15/10 cd4 680 vl 205 cd% 27
Apr 3/11 cd4 780 vl <40 cd% 30
Jul 17/11 cd4 960 vl <40 cd%33
April 15/12 cd4 1,010 vl <40 cd% 39
April 20/12 Switched to Viramune + Truvada
Aug 2/12 cd4 1040, vl <40, cd% 38
Oct 19 cd4 1,110 vl <40 cd% 41

Offline Cliff

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Re: Formal complaint about the CSI connection
« Reply #53 on: February 17, 2007, 06:02:57 AM »
I've watched a transformation both in myself and in the forums.  When I first arrived I didn't use my real name.  I never had a picture up.  I didn't say a whole lot about myself, outside of my disease.  Overtime I became comfortable that this was a safe place and I could be more open about myself without fearing that someone would find out my status.  I remember how in a few short weeks, a few forum members started putting up their real pictures and that began spreading like wild flowers.  I was caught up in the movement as well.  It was also a joy to start learning the real names of some of my forum buddies and to see them use their real names in the forums (as I started doing).  This was a good thing and to those who suggest that people stop providing personal information, I say that is a step backwards.  Yes, it's probably safer.  But I don't think anyone is served by all us running back to the closet.

I also need to say that this isn't about being unfriendly and closed to newcomers.  I've never had an issue with the Poz and Aidsmeds merger, nor with all of the new folks the merger brought to the forums.  However, this issue isn't the same as the merger.  This issue is primarily about the forums now being connected to a large HIV negative population via a very popular tv series, that as Northernguy put so well, is watched by family, friends and coworkers.

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #54 on: February 17, 2007, 06:14:48 AM »
I doubt a television show or its viewers are the problem here. Frankly, I don't even know what this show is or is about.

The problem seems to be that *some* folks are freaking about others finding out they are HIV positive. I can only wonder why if someone is that sensitive about someone finding out they would post anything on the Internet that would directly expose them. This totally baffles me, and borders on the paranoid.

That said, I agree with jkinatl2 that "anyone should reconsider offering up any information that could be used against them," and suggest that they should have done so all along. Itís only common sense.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Cliff

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Re: Formal complaint about the CSI connection
« Reply #55 on: February 17, 2007, 08:34:45 AM »
People who have issues with the recent developments ("freaking out" is a bit over-the-top), haven't deluded themselves into thinking that they were always posting in a Willy Wonka land, completely cutoff from the rest of the internet.  It's about risk.  The risk of being outed is greater, (or perceived to be greater), when the forums are connected with a show watched by millions.  I don't think those who keep rehashing the "this is the internet" line, get it.  The risk that you will run into someone you know, (who doesn't know your status and you prefer to keep it that way), isn't the same at every single website you visit on the internet.  This is because, (and here's my attempt at stating the obvious since it seems to be in vogue these days), not all 1.1 billion people using the internet go to the same website.  There was an unwritten contract and it changed overnight.  Some people have issues with that.  Others don't. 

But yes, this is a public forum.  Got it.  But for me, the issue is not about aidsmeds being on the internet.  It's about having the profile of this internet forum change overnight (and more importantly, without warning) and for others it's also about restrictive terms & conditions and the impact of those terms, now that the site is connected with a global media enterprise.

Is it paranoia?  Maybe.  But then again, I suppose you could say the same thing about anyone who chooses to hide their HIV status.

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #56 on: February 17, 2007, 08:58:31 AM »
Speaking for myself, Iím a bit disturbed at people attacking the moderators and trying to dump the responsibility we all have for keeping up on changes in policy here, implied or otherwise, but thatís a different topic.

I wasn't suggesting some folks don't have reasons to keep their HIV status private, but I do question the reality of expecting visitors to one web site on the entire WORLD WIDE WEB being any real threat to anyone, or to even care. Perspective is in the eye of the beholder I guess.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline Dachshund

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Re: Formal complaint about the CSI connection
« Reply #57 on: February 17, 2007, 09:00:37 AM »
I think people confuse being a member of this site with with being a guest. Since we are dealing with advertising I am reminded of the tag-line from a commercial, "membership has its privileges." Unless banned the only privilege we have is choosing to log on or not to log on. As guests you continue to be welcomed to the party as long as you are not too loud, too obnoxious or burn a hole in the carpet. For the most part we continue to be invited...cuz a party of one, just ain't much fun.



p.s. I think this has been one of the most civil discussions to date with no histrionics or attacks on moderators.
« Last Edit: February 17, 2007, 09:03:31 AM by Dachshund »

Offline Peter Staley

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Re: Formal complaint about the CSI connection
« Reply #58 on: February 17, 2007, 09:16:18 AM »
This issue is primarily about the forums now being connected to a large HIV negative population via a very popular tv series, that as Northernguy put so well, is watched by family, friends and coworkers.

Cliff, how is this different from the even larger HIV negative population that finds these forums via search engines, and end up in our Am I Infected forum?  I can assure you, even this week, the folks that registered or just browsed as guests in the Am I forum were a far large group than the audience we got from the CSI show.  Sure, there's one big difference.  The Am I crowd found us on their own, while the CSI crowd was invited by us.  But it's still a comparison worth exploring, because if you feel the CSI crowd is a threat to these forums, then why wouldn't you also feel that the Am I crowd is a threat?  

I would even argue that the Am I crowd is more of a threat.  1) There are more of them (by far), and 2) many of them have a pathological fear of HIV, which might make them less sympathetic to those of us living with the virus than the average CSI viewer would be.  For instance, the Am I crowd has always had members that have ventured into the Living With forum, for whatever reasons (mostly out of a desperation to hear answers to the questions they feel aren't being answered).  We haven't had this problem at all with the CSI crowd.

So I ask you again, why hasn't anyone argued for the closing of the Am I forum because it's a threat to our so-called privacy?   There's no doubt we could make this a much safer place.  We could run it like the forums setup by a few folks we banned.  Their seemingly straits-only forum is closed, so you have to apply to get in.  Our software allows us to do the same.  

But of course, no one wants this, least of all me.  In a sense, it's the very openness of these forums that make them what they are.  A place where anonymous guests can browse for months until their comfort level allows them to post for the first time.

And people living with HIV HAVE found us via the CSI connection.  Plus, the CSI forum itself is kind of awesome -- a really great discussion, and a HUGE education for the show's writers and creator, let alone it's fans.

Peter

Offline Andy Velez

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Re: Formal complaint about the CSI connection
« Reply #59 on: February 17, 2007, 09:29:11 AM »
Cliff,  as I wrote previously I appreciate your comments about this issue and completely respect your feelings.

I agree that some earlier advance notice would absolutely have been a good idea. Unfortunately we here at AIDSMEDS actually didn't get much advance notice on this ourselves. And your specific concerns were ones that we discussed as well in the short time before the event occured. I suspect that in the future other "opportunities" will be considered more carefully before becoming a done deal.  

Because we have always taken care to protect this special part of the world we have created here at AIDSMEDS, I think it can sometimes give people a sense that we are impervious to the outside world. As you know, from time to time experiences like denialist invasion attempts have demonstrated how vulnerable we can actually be at times.

Personally, I can only repeat that Peter, Tim, Ann and I regard what we do here as a special trust. To that end, however imperfectly at times, we respectfully protect everyone here to the best of our ability. And always will. That's bedrock on this site.

The insights and maturity of the comments regulars have eloquently expressed both here and in the CSI section have made me feel very proud of who we are. I have found myself thinking  how well they have gotten to the heart of the issues. That's pretty terrific and it's just reminded me again of the respect and fondness which I feel for so many here.  

Right now there's this flurry going on about CSI. I hope and expect that when that settles down we will continue on with our basic mission which is to provide a safe and informative haven here, of which you are very much a part.

Cheers,
Andy Velez

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #60 on: February 17, 2007, 09:36:11 AM »
For the record, I'm not one of the founders of this website - and by this website, I mean AIDSmeds.com, not the POZ.com portion. That's someone else's baby. Peter Staley founded this place in ... was it 1999 or 2000? I don't remember. I've been around since early 2001 (my god, nearly six years now!), so long my password has cobwebs on it. I consider myself just another member first and foremost, one who's taken on moderator duties because I believe in what this place is about and want to help make it work.

When we talk about making this place safe, we don't mean safe from the eyes of the general public. How could we accomplish that? We can't. What we're talking about is making this place safe from people attacking each other - which is no mean feat, I can tell you. We mean that we are going to keep snake-oil sales-persons and denialists from preying on people here. We mean we aren't going to let homophobes use this place to rant. We're not going to let people take advantage - as best we can.

There was a time when you didn't have to create an account to post here. If people think nasty comments fly around here now, you should have seen it back then. There was a time when nobody posted a photo, other than Peter, Tim and Andy. There was a time when people weren't warned and weren't banned. We've learned through trial and error what works and what doesn't. We're still learning, obviously.

Cliff hit the nail on the head when he said the perceived risk is what has changed. I fully admit this to be the case for me. We have always had visitors. There is a member here from the Am I forum who lives around the corner from me and yes, she did contact me. Thankfully she had nothing but supportive words for me, and I do realise it could have been different - but this happened over the summer, long before the CSI forum came about.

Is this more likely to happen now we are involved with CSI? That remains to be seen but on the evidence thus far, I don't think it's anything like what I had imagined. Yes, I was worried about this. I'm not worried about it now, from a personal perspective as well as a more general one. I AM still worried about people's whose perceived risk remains high. I know what it's like to feel that panic and I don't know how to make it better for those of you who are feeling that. I wish I did.

As for the advance warning, it is my understanding that this CSI forum thing came about rather quickly. Although it was a "done deal" when I found out a few days prior, there were contractual issues being tidied up, right up until moments before Peter finally posted the announcement. He posted as soon as he was able to and I'm sure he would have posted earlier if he could have.

In a way, Peter was in a "damned if you do, damned if you don't" position. If he turned CBS down they would have gone elsewhere and the point with this being if they went elsewhere, they probably wouldn't have had people feeling free to correct the holes and errors in the storyline. They wouldn't have heard the criticisms surrounding the transmission method. Here they're getting the real deal, from real people living with hiv. From an educational standpoint, they could not have found better. It's a pretty bold leap into the unknown for all of us, from Peter and S&S, on down to the newest member.

I see Peter has posted while I've been writing. He's got a very good point about the membership from the Am I forum - and actually ties in with some of my comments above.

I wish I knew how to reassure people that this CSI forum isn't having the effect that some (including me, in the beginning) have feared. They ARE staying in that part of the forum. When you think about it, who in their right mind is going to come over to this side and wade through all the THOUSANDS of posts to see if they know someone?

Ann
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline skeebo1969

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Re: Formal complaint about the CSI connection
« Reply #61 on: February 17, 2007, 09:44:55 AM »
Speaking for myself, Iím a bit disturbed at people attacking the moderators and trying to dump the responsibility we all have for keeping up on changes in policy here, implied or otherwise, but thatís a different topic.

  

  Daniel,

   When you figure out how the moderators are being attacked please start a thread stating the facts pointing to such things.  Like Cliff said and I totally agree, this is the internet and that much we do understand.  


  Peter,

    Why have we not wanted the Am I Infected forum closed?  Do you really think this is the same as having the CSI forum in place?  I can respect your argument, although  it disappoints me further that you draw this comparison.


    To everyone else who does "not give a fuck" or "does not care" who knows their status, I applaud you.  As a matter of fact I congratulate you and all I ask is understand not everyone shares your confort level.


   T
I despise the song Love is in the Air, you should too.

Offline ndrew

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Re: Formal complaint about the CSI connection
« Reply #62 on: February 17, 2007, 09:46:53 AM »
My formal complaint regarding CSI is that I don't care for it, especially that dreadful music, lighting and over-the-top edting and camera work.  CSI is like a desert flavored with sugar.  Media pollution, I refuse to let it infiltrate my life...

Drew

Offline dtwpuck

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Re: Formal complaint about the CSI connection
« Reply #63 on: February 17, 2007, 10:17:48 AM »
My formal complaint regarding CSI is that I don't care for it, especially that dreadful music, lighting and over-the-top edting and camera work.  CSI is like a desert flavored with sugar.  Media pollution, I refuse to let it infiltrate my life...

Drew

Thank you!!  Well said.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline koi1

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Re: Formal complaint about the CSI connection
« Reply #64 on: February 17, 2007, 10:19:04 AM »
If we take into account what the benefits are of having the csi connection, then all of this will blow over. The number one benefit is that more awareness will come of it and in perhaps a very positive way.  Hopefully people coming here will know how to discen from T.V. and reality. This website will provide the dose of reality.

I can't tell you how many people are still unaware of the facts of HIV. I was igonrant of a lot of things before I tested positive. People need to know what our world is like, our struggles, our uncertainties, and even the how the practicalities of life are altered temporarily or forever.  They need to know the degrees of suffering we go through to get a good picture of what HIV/AIDS is like. Only public awareness will increase public sentiment for more research and the search for a cure. Yes I still believe our lives will improve.

Now if you post something that you are ashamed of, you should not be posting it in the first place. Remember that anyone can read it. And yes, you do increase your publicity by posting a real picture, giving very detailed personal information, which are not necessary to be considered a real person living with AIDS. Again if posting a pic is something you need,  and you don't work in a job where it matters, more power to you. But don't think that this the the "Joy Luck Club" and it never was an intimate place. Yes it is a place for HIV positive people, but so far cyberproof of serostatus is not a requirement to join.

rob
« Last Edit: February 17, 2007, 10:25:13 AM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #65 on: February 17, 2007, 10:22:31 AM »
I AM still worried about people's whose perceived risk remains high. I know what it's like to feel that panic and I don't know how to make it better for those of you who are feeling that. I wish I did.

Me too, Ann. It's rather heartbreaking actually.

Drew, you crack me up! :D

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline manchesteruk

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Re: Formal complaint about the CSI connection
« Reply #66 on: February 17, 2007, 10:27:01 AM »
I just wanted to add I was always under the impression the Living With HIV forum was for well people living with HIV! I thought it was a support forum not a place to educate negative individuals.  Am I the only person who thought this?

Just want to apologise for this I completely misread what Peter had written and saw it as the Living Wth forum and not the Am I infected one, my mistake.
Diagnosed 11/05

"Life is too important to be taken seriously" Oscar Wilde

Offline koi1

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Re: Formal complaint about the CSI connection
« Reply #67 on: February 17, 2007, 10:30:55 AM »
Hi Daniel,

I am also baffled by the people who think they can post a real picture and remain anonymous. I have not even posted one on any dating site, becuase of my job as a teacher. I have not posted where I work, my address, nor anything that would "give me away." This is not only compromising privacy but also dangerous, for many of us.

rob
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline koi1

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Re: Formal complaint about the CSI connection
« Reply #68 on: February 17, 2007, 10:39:49 AM »
And Yes, many of us who enjoy this website should instead be thanking those that make it possible instead of just offering negative comments. This website is a great idea, but it took vision and hard work to get it to where it is today. This is not PBS, and as far as I know it is free, yet bills have to be paid, and the money must come from somewhere. So what if a bit of commercialism and activism have to meld.  Where is this not the case? Mac cosmetics has donated 90 million dollar to AIDS research since 1994. They are still a commercial entity, but dont' you think the the money helped our cause?

rob
« Last Edit: February 17, 2007, 10:41:47 AM by koi1 »
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #69 on: February 17, 2007, 10:40:31 AM »
Hi Daniel,

I am also baffled by the people who think they can post a real picture and remain anonymous. I have not even posted one on any dating site, becuase of my job as a teacher. I have not posted where I work, my address, nor anything that would "give me away." This is not only compromising privacy but also dangerous, for many of us.

rob


Understood Rob. That was never the point I was getting at, but understood.

PS: I can see you through your computer screen you know. :o :-* ;)
« Last Edit: February 17, 2007, 10:42:19 AM by DanielMark »
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

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DIAGNOSED IN 1988

Offline koi1

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Re: Formal complaint about the CSI connection
« Reply #70 on: February 17, 2007, 10:43:46 AM »
Oh, no let me put some clothes, on, nah, fuck it.

ror
diagnosed on 11/20/06 viral load 23,000  cd4 97    8%
01/04/07 six weeks after diagnosis vl 53,000 cd4 cd4 70    6%
Began sustiva truvada 01/04/07
newest labs  drawn on 01/15/07  vl 1,100    cd4 119    7%
Drawn 02/10/07
cd4=160 viral load= 131 percentage= 8%
New labs 3/10/07 (two months on sustiva truvada
cd4 count 292  percentage 14 viral load undetectable

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #71 on: February 17, 2007, 10:48:32 AM »
Just don't tell my boyfriend okay? He might think I'm Gay or something. 8)
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline ACinKC

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Re: Formal complaint about the CSI connection
« Reply #72 on: February 17, 2007, 11:07:59 AM »
My predicition.  This too shall pass.  It will all blow over after May2nd.  If you dont like it then just wait until May 9th to let it all die out.  I also agree that this is the internet and it is all very public and it should stay that way.

Trust me people, this will blow over.
LIFE is not a race to the grave with the intention of arriving safely
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Offline Peter Staley

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Re: Formal complaint about the CSI connection
« Reply #73 on: February 17, 2007, 11:11:29 AM »
   Why have we not wanted the Am I Infected forum closed?  Do you really think this is the same as having the CSI forum in place?  I can respect your argument, although  it disappoints me further that you draw this comparison.

T -- can you let me know a little bit more as to why the comparison "disappoints" you?  I realize no one is advocating for the closing of the Am I forum, but folks are very upset about the existence of the CSI forum.  I'm trying to point out, that from a privacy perspective, there's not much difference between the two.

Cheers,

Peter

Offline ACinKC

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Re: Formal complaint about the CSI connection
« Reply #74 on: February 17, 2007, 11:16:28 AM »
THIS is why Peter did it and I applaud the decision.  Look at the newly engaged, the 19 year old in ohio and others who just found out and appears they most likely found us due to the CSI partnership.

http://forums.poz.com/index.php?topic=8952.0

LIFE is not a race to the grave with the intention of arriving safely
in a pretty and well-preserved body, but, rather to skid in broadside,
thoroughly used up, totally worn out, and loudly proclaiming--WOW! WHAT A
RIDE!!!

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #75 on: February 17, 2007, 01:30:33 PM »
I'd like to clarify my thoughts on perceived risk of more guests reading this side of the forum and someone being found out as a result.

When I first heard about the CSI forum, I perceived it to be a potential problem where people's privacy etc to be concerned. I was VERY worried about this aspect of the project. So much so that I lost sleep over it.

However, now that I've seen it in action, and watched it from both a moderator's perspective as well as a member's perspective, I see that this concept is essentially a paper tiger. How to make others see this - I just don't know.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Cliff

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Re: Formal complaint about the CSI connection
« Reply #76 on: February 17, 2007, 01:51:25 PM »
Peter,

I would say the difference in privacy concerns is both scope and the nature of the individuals who come here.  The folks in the AM I forum came here via searches on the internet due to exposure via (potentially embarrassing) sexual activity.  I see that being different from folks coming from CSI who may just casually go to the site.  Also, the scope is different.  There is the potential for far more people to come because of CSI than via normal internet searches.

For example, my dad watches CSI.  I have a bigger fear that he will find this website because of CSI, than he would from doing an internet search because of a potential exposure to HIV.

Also, I think some of this is related to forum member previously not having to think about how large the audience is, whereas now we do.  When I was a blogger, I never thought about how many people had access to the blogs or that the blogs were searchable on the internet.  I perceived the community as being small, even if in reality it wasn't.  I'm glad Ann picked up on my intentional use of the word "perceived."  I recognise that my fear isn't just about what is real.  It is also about the imaginary ones.  But the fears are there, regardless of the proportion of reality vs perception.

Cliff

P.S.- I am not advocating that the forums become more private.  I just think that privacy concerns should be given more weight when making big decisions like the CSI venture and that such decisions are appropriately communicated in advance (I understand the timing issues with the CSI matter).  Maybe even consultations with a couple of members to get their views would be nice, so that it feels a little more collaborative.  Would it have changed the decision Poz made?  Maybe not.  But I think I would have felt better having some of the explanations/information that I now have (via the responses from all the mods in this thread and from Reagan in the other thread) up front.

I agree with AC, this will pass.  I didn't mean for Peter to feel as though his back is up against the wall.  I just needed to say, publicly, how I felt about this (particularly since I knew a couple of buddies of mine were having some serious concerns but couldn't speak about it).  I now see that there was some internal debate on this and I can also see the potential opportunity that this can bring and so the various debates (in multiple threads) have been helpful.

Offline DingoBoi

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Re: Formal complaint about the CSI connection
« Reply #77 on: February 17, 2007, 02:10:42 PM »
when i first started posting here, I was very shy.

Later I became emboldened and posted my picture, primarily based upon the concept the others wouldn't find out about me because they had no reason to visit this website.

Yes, it is a psuedo-anonymity and nothing can be gauranteed... but people do have a reasonable expectation that non-hiv or non-hiv worried people aren't visiting this site.

I am not out to my parents and I don't want them to know just yet.   Yes, I do understand posting a pic on the web is public, but there is also a REASONABLE EXPECTATION that somebody not iintrisically interested in HIV will ever visit this site.

Yes, I do have my vids on youtube which is where my 'friend' found me (lord knows why since she is a big ol lesbian but...)

The web is very public.  I agree with that.   But I also contend that it is so huge that most feel a reasonable expectation that we will not be outed, since most people do not visit an HIV website.

Now, with the CSI links, this site is REALLY PUBLIC and anyone who watches CSI, who has the faintest curiosity, can log in.  Education is great sure, but at what price to the people who do depend on this site for support?

If nothing else, couldn't you create a subdomain for the forums to discuss this?  That wasn't intrinsically linked to the rest of us?

My videos have gotten over 21000 hits through youtube.  Since I started posting here, I've gotten 2 comments from coworkers (in a company of 1800 in orlando) that they've seen my video.  I've also gotten a message from a friend in my hometown who came across it.

The web truly is huger than most imagine or perceive... protecting that idea should be paramount for a forum like this where people do spill all there thoughts and fears.

I knew what I was getting into potentially when I started my blog, but I never expected people to bring it up at work!  And this was when I was only do text blogs.

I expected my 'audience' to be the random masses and nobody who really 'knew' me would ever find it.

I was wrong and logically I know that thinking is wrong.. but based upon probability, it was right.

Now this CSI has introduced a huge, new factor into the probability of somebody being unwantingly outed.

PS:  The thread for the pictures of last year has been trashed temporarily pending the removal of the influx of CSI'ers.  I put that site together and did try to keep pictures out of the mainstream, but I couldn't be sure.  You put this thread in the mainstream and it was better to have it removed than let people view it.

It's sad.







Offline Peter Staley

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Re: Formal complaint about the CSI connection
« Reply #78 on: February 17, 2007, 02:16:19 PM »
Thanks, Cliff.  This has been an educational thread for me, that's for sure.  You're making some really good points that I need to consider.

I still think the CSI viewers aren't as Joe Public as you fear.  The show ended with a less-than-five-second visual showing the knowhivaids.org URL, and telling folks to discuss "Stella's Story" with the writing staff (or words to that effect).  Once a viewer found the KNOW HIV/AIDS website (if they could remember it after it flashed by so quickly!), they then would have to click on the Stella's Story logo, which leads to the "letter from Zuiker" page.  Only on that page do they find a link that leads directly into our CSI forum.

I knew all of this up front (before agreeing to launch the CSI forum), and believed this would greatly limit who came here.  I thought we'd get two kinds of folks, with a risk of a 3rd kind:  1) rabid CSI fans that salivate at the idea of "talking" with the writing team about the plot and the show, 2) viewers who cared enough about HIV to discuss it online (the folks I wanted MOST of all), and 3) rightwing nuts who wanted to cause trouble (we've luckily gotten NONE of these).

But I felt strongly that the audience would be much smaller than the folks at CBS kept predicting.  And it turns out I was right.  We are still getting FAR MORE new members and guests in the Am I Infected forum than the CSI forum (if you average out the last few days of traffic).

So I still think the Am I forum remains a far higher threat to the privacy of our HIV+ members, but we've managed that risk very successfully through clear rules and heavy moderating methods.  We are doing the same with the CSI forum.

Peter

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #79 on: February 17, 2007, 02:18:54 PM »
But I think I would have felt better having some of the explanations/information that I now have (via the responses from all the mods in this thread and from Reagan in the other thread) up front.


Hi Cliff,

I couldn't have had much input "up front" because it took me a few days to get my head around the whole thing, and then more time to watch and see how it actually all panned out.

I saw your thread almost as soon as you posted, but I didn't reply until quite some time later. My initial post in this thread was one of the most difficult I've ever had to write here as I've had a lot of mixed feelings over the situation. I've sorted it all out in my head now though, and I'm feeling confident that our darkest fears will NOT come to pass.

It's gonna be ok and it's gonna eventually blow over.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline dtwpuck

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Re: Formal complaint about the CSI connection
« Reply #80 on: February 17, 2007, 02:32:15 PM »
THIS is why Peter did it and I applaud the decision.  Look at the newly engaged, the 19 year old in ohio and others who just found out and appears they most likely found us due to the CSI partnership.

http://forums.poz.com/index.php?topic=8952.0



for me, this risk clif expresses (validly) is outweighed by things like apollo's posting.   I spent several days recently consoling an eighteen year old boy about becoming hiv+.  It literally brings tears to my eyes to think about someone so young having to face this.     I think this is the reason why I spend a lot of time on the "I just tested poz" forum.   

I was weighing some of the pros and cons about this issue.  I could care less about CSI etc.  But, reading about a 19 year old, and reading his posting has basically made the decision for me.  It's worth the risk.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #81 on: February 17, 2007, 02:42:58 PM »
I was weighing some of the pros and cons about this issue.  I could care less about CSI etc.  But, reading about a 19 year old, and reading his posting has basically made the decision for me.  It's worth the risk.

Puck, that's essentially the same conclusion I've come to. The risk is proving to be MUCH less than I had anticipated and the benefits definitely outweigh.

Ann
Condoms are a girl's best friend

Condom and Lube Info  



"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline NycJoe

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Re: Formal complaint about the CSI connection
« Reply #82 on: February 17, 2007, 02:54:31 PM »
I totally agree.  The benefits FAR outweigh anything else.  I hope many people come to this website to learn and benefit from it.  Isn't that what this website is about?  Kudos to Peter and moderators for doing a hard and thankless job.  I'm glad their are people out there like you who care enough to devote your time and energy to a site such as this that we are all guests of. 

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #83 on: February 17, 2007, 04:11:39 PM »
Puck, that's essentially the same conclusion I've come to. The risk is proving to be MUCH less than I had anticipated and the benefits definitely outweigh.

Ann


I went through a similar ordeal like this when I helped to start a group.   Although it was a slightly different situation the premise was similar.  Privacy was the topic at hand.   Although I wasn't the moderator I'd helped start the group and the majority of it's members were there because I mistakenly trusted the other moderator.   There were a few people complaining about privacy and such.   Well, in a bad judgement call moderator decided to make the group "hidden."    I had argued against doing that from the beginning because it was obvious that no newly diagnosed people or anyone needing help would be able to find the group.

That moderator and I parted ways.  I started my own group which although private could be found by those looking.   Her group has failed miserably left only with a rag tag full of misfits and turned into a dysfunctional mess.   It was never about whether I was right or wrong, but to me it was a matter of what was right for everyone with HIV or AIDS.   

Most definitely the benefits outweigh the risks!   I hope this example helps illustrate that!

Many of you have argued issues of privacy and concerns of disclosure.   No one here is outing you.   Only you can do that and if you take risks by posting personal information on the internet whether it's this site or gay.com or any number of others you are jeapordizing your own privacy.   If you don't want your status disclosed choose not to have a picture and don't give out your full name.   

To me, even if just one person finds this site and finds help that's the most important issue at hand.   Throwing stones at the moderators and others by taking their response out of context for your own reasons isn't going to benefit anyone searching for help here.   And, I realize I've done some of this too.   If I've offended anyone I appologize!



« Last Edit: February 17, 2007, 04:42:21 PM by AustinWesley »
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline gerry

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Re: Formal complaint about the CSI connection
« Reply #84 on: February 18, 2007, 02:25:48 AM »

I saw your thread almost as soon as you posted, but I didn't reply until quite some time later. My initial post in this thread was one of the most difficult I've ever had to write here as I've had a lot of mixed feelings over the situation. I've sorted it all out in my head now though, and I'm feeling confident that our darkest fears will NOT come to pass.


Hi Ann,

I sincerely hope you are right about the darkest fears not coming to pass.  My concern is not so much now how the increased traffic is impacting the order in the forums as the mods have been ready to take on this task, but more so about the members who have chosen to remain silent and away from the radar screen amidst all these because of the perceived risks.  Hopefully, this is just a temporary thing, but who knows?  Many of these good folks would probably not even attempt to speak up in their defense at this juncture.  We should respect their individual decisions without labeling these a sad state of affairs and try to avoid alienating them even further at a time they are already feeling quite vulnerable (this is not specifically referring to any of your posts, but just the general feel of what some have said here). 

Hi Peter, Tim, Andy and Ann

There is one thing I am confused about.  I seem to be getting some mixed signals from the mods with some saying that this experiment will eventually blow over, after which the forums should revert back to business as usual, while other mods seem to imply that collaborations such as this one would be the right vehicle to get aidsmeds.com more exposure.  I guess I'd want some clarification regarding this in terms of which direction aidsmeds is heading.  Am I reading this wrong?  Or is it too early to tell? 

Gerry


Offline joemutt

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Re: Formal complaint about the CSI connection
« Reply #85 on: February 18, 2007, 03:36:38 AM »
Off course, pushing us back into silence will (further or re-) stigmatise us, but it's the world wide web so I think it has always been a given that anyone can see and read this site. What I'm not so comfortable with is that our own words no longer seem to  belong to us  once we put them down here, and that the opportunity to delete our postings has been taken away from us recently  (no edits more than 48 hours after posting), like that Zuiker guy making a book with the 'best of aidsmeds' with contributions from this site, ok, should have read the fine print of the General Conditions of Use, but I feel that really stinks.  >:(
(not that I wd stand a fat chance to be anthologised  ;))
« Last Edit: February 18, 2007, 03:38:20 AM by joemutt »

Offline Peter Staley

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Re: Formal complaint about the CSI connection
« Reply #86 on: February 18, 2007, 08:37:44 AM »
Hi Peter, Tim, Andy and Ann

There is one thing I am confused about.  I seem to be getting some mixed signals from the mods with some saying that this experiment will eventually blow over, after which the forums should revert back to business as usual, while other mods seem to imply that collaborations such as this one would be the right vehicle to get aidsmeds.com more exposure.  I guess I'd want some clarification regarding this in terms of which direction aidsmeds is heading.  Am I reading this wrong?  Or is it too early to tell? 

Gerry -- it's way too early to tell.  I hadn't even conceived of a collaboration like the one that's occurred -- they came to us, at the last moment, and my gut call on agreeing to it was because I felt there was lots of upside, and the potential downsides could be managed.  We're going to have to let this play out to give it a fair assessment after it dies down.  That will largely determine if we ever do anything like this again.

Peter

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #87 on: February 18, 2007, 08:48:44 AM »
like that Zuiker guy making a book with the 'best of aidsmeds' with contributions from this site,

Joe,

The ONLY forum that Zuiker can use words from is the CSI forum. He absolutely CANNOT use anything written anywhere else on this website. If you don't want to chance Zuiker or CBS using your words, don't post in the CSI forum. It's that simple.

Ann
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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Ann

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Re: Formal complaint about the CSI connection
« Reply #88 on: February 18, 2007, 08:55:12 AM »
Hi Ann,

I sincerely hope you are right about the darkest fears not coming to pass.  My concern is not so much now how the increased traffic is impacting the order in the forums as the mods have been ready to take on this task, but more so about the members who have chosen to remain silent and away from the radar screen amidst all these because of the perceived risks.  Hopefully, this is just a temporary thing, but who knows?  Many of these good folks would probably not even attempt to speak up in their defense at this juncture.  We should respect their individual decisions without labeling these a sad state of affairs and try to avoid alienating them even further at a time they are already feeling quite vulnerable (this is not specifically referring to any of your posts, but just the general feel of what some have said here). 

Gerry



Gerry,

I'm a bit dismayed that you chose to include the portion of your post I quoted in bold with your comments directed at me. I have done my utmost to try and convey the fact that yes, I do understand completely how some people are feeling and that includes the posters who are remaining silent at this time. Do you seriously think you are the only one these people have contacted privately? I fully respect their decisions.

And I have never labeled these decisions a "sad state of affairs". I feel badly that some are feeling vulnerable and I can't stress that enough. I wish I know how to make it better for them, as I have previously stated. One of the reasons I had such a difficult time making that first post is because I knew I needed to chose my words carefully to avoid inadvertently alienating anyone.

You may have added a disclaimer that you weren't specifically referring to any of my posts, but what's a person to think when you add those words to a post directed at me?

Ann
« Last Edit: February 18, 2007, 08:56:45 AM by Ann »
Condoms are a girl's best friend

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"...health will finally be seen not as a blessing to be wished for, but as a human right to be fought for." Kofi Annan

Nymphomaniac: a woman as obsessed with sex as an average man. Mignon McLaughlin

HIV is certainly character-building. It's made me see all of the shallow things we cling to, like ego and vanity. Of course, I'd rather have a few more T-cells and a little less character. Randy Shilts

Offline Catman

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Re: Formal complaint about the CSI connection
« Reply #89 on: February 18, 2007, 09:06:50 AM »
I agree with Cliff. This forum should have been kept "low" on the non-positive radar. As for myself, I'm not posting as frequently and much less posting pics that were once shared with others because we HAD trusted this site.

Ann- I do trust YOU, thanks for reassuring us that things will not get out of hand, but still...I'm not quite as comfortable as before...
« Last Edit: February 18, 2007, 09:30:41 AM by Catman »
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Offline Tucsonwoody

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Re: Formal complaint about the CSI connection
« Reply #90 on: February 18, 2007, 10:49:43 AM »
While there are disclaimers about the ability of the CSI folks to only use anything posted in the CSI forum, I think something that makes some people nervous are questions like these from the Zuiker interview:

"Are you going to participate in the Forums?"

"What will you do with the content of the Forums?"  "I think about me publishing those and putting that on the marketplace...."

This implies more than one forum doesn't it? And it seems to me most of the stories about people living and dying with HIV/AIDS are in forums other than the CIS one.  And while the plan today is not to let them be used by CSI...no one can say what decision will be made down the road for CSI or the next thing that will come along. Right?

So for me, regardless of what legal rights to privacy we give away by posting here and knowing full well how the internet is public, I'd have to say that whatever benefit has been derived from the CSI exposure does not outweight the turmoil and division it has caused among us. The people who have concerns are pitted against those that do not and that will have lasting effects beyond the CSI run.

It's just a mess.......
And I wished for guidance, and I wished for peace
I could see the lightning; somewhere in the east
And I wished for affection, and I wished for calm
As I lay there - Nervous in the light of dawn

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #91 on: February 18, 2007, 11:23:45 AM »
What I'm not so comfortable with is that our own words no longer seem to  belong to us  once we put them down here, and that the opportunity to delete our postings has been taken away from us recently  (no edits more than 48 hours after posting),

When I sit in a room with you and have a discussion, can you erase anything you say?  Why should a web forum on the internet be any different?  I do not understand this argument people are trying to make.

If people have issues with HIV disclosure, which I think is the main concern, they should be careful with what they say of a personally identifiable nature ANYWAY, and they should not be posting sexy photos of themselves ANYWAY, etc. etc. -- I just don't get it.  Sorry.

I realize that in these situations we can make an error in judgement, and if there is some wildly dangerous situation that the moderators, upon request, would make some allowances.  I think though that the non-edit feature is a sound idea for following any sort of linear type discussion.  And like Ann stated either in this thread or another one, I would have suggested a shorter time frame than 48 hours.  I think she suggested six hours, and I think that is more than generous amount of time to correct spelling and grammatical errors, and the odd circumstance when you say something totally inflammatory that should be, upon reconsideration, retracted.

There have been REPEATED instances where, in any given thread, a poster makes a comment, it's replied to without quote functions in the subsequent post, and then days later is edited ruining the entire thread and making someone else look like some sort of dementia sufferer.  This does not occur in the real world, this sort of revisionism of discussion, and I see no reason it should occur here.

The bottom line is that a certain part of our posting members had some sort of naive false illusions of privacy on the internet that does not, and has never, existed.
« Last Edit: February 18, 2007, 11:27:45 AM by philly267 »
"Iíve slept with enough men to know that Iím not gay"

Offline gerry

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Re: Formal complaint about the CSI connection
« Reply #92 on: February 18, 2007, 11:35:03 AM »
Gerry,

I'm a bit dismayed that you chose to include the portion of your post I quoted in bold with your comments directed at me. I have done my utmost to try and convey the fact that yes, I do understand completely how some people are feeling and that includes the posters who are remaining silent at this time. Do you seriously think you are the only one these people have contacted privately? I fully respect their decisions.

And I have never labeled these decisions a "sad state of affairs". I feel badly that some are feeling vulnerable and I can't stress that enough. I wish I know how to make it better for them, as I have previously stated. One of the reasons I had such a difficult time making that first post is because I knew I needed to chose my words carefully to avoid inadvertently alienating anyone.

You may have added a disclaimer that you weren't specifically referring to any of my posts, but what's a person to think when you add those words to a post directed at me?

Ann


I apologize, Ann, because I really was not addressing that part to you.  Looking back at how I wrote it, I should have completely separated that part instead of just writing the additional clarification in parenthesis.  I appreciate how this turn of events has been very difficult for you as you have articulated in your posts, and I do know that people have confided in you privately who had otherwise remained cyber-silent about this topic at all ever since the event unfolded, and that's part of what's tearing you apart about this entire situation. 

And no, you never said or insinuated that this decision is a "sad state of affairs," again I apologize for adding this part to the message that I addressed to you.  In fact, that statement was not about the decision to do the CSI link at all but about some people's reactions to other people's reactions.  This was supposed to be addressed to those who keep "reminding" people who have reacted negatively to this entire turn of events that it is essentially their fault for letting their guard down and posting details about themselves that they should never have posted in the first place if they didn't want those details stumbled upon by accident in a public forum.  (They already get that.)  And likewise, by retracting from it or responding negatively to it, that it somehow makes them "lesser persons" by doing so in the grand scheme of furthering the "cause" of advancing HIV awareness.  I know that you appreciate the fact that turning completely public under these circumstances is a very personal choice (again, another reason why this is tearing you apart because it could backfire with those who are not ready to do this, who have found support here and are now struggling with the possibility of leaving it behind).  Again, that "sad state of affairs" comment was not directed at you, but I am getting this vibe from what others have posted here and in other threads.

I might not be making myself any clearer even after this clarification.  If not, I'll just go back to my initial sentence to reiterate that the statement was not intended for you.

Gerry

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #93 on: February 18, 2007, 11:41:38 AM »
When I sit in a room with you and have a discussion, can you erase anything you say?  Why should a web forum on the internet be any different?  I do not understand this argument people are trying to make.

If people have issues with HIV disclosure, which I think is the main concern, they should be careful with what they say of a personally identifiable nature ANYWAY, and they should not be posting sexy photos of themselves ANYWAY, etc. etc. -- I just don't get it.  Sorry.

I realize that in these situations we can make an error in judgement, and if there is some wildly dangerous situation that the moderators, upon request, would make some allowances.  I think though that the non-edit feature is a sound idea for following any sort of linear type discussion.  And like Ann stated either in this thread or another one, I would have suggested a shorter time frame than 48 hours.  I think she suggested six hours, and I think that is more than generous amount of time to correct spelling and grammatical errors, and the odd circumstance when you say something totally inflammatory that should be, upon reconsideration, retracted.

There have been REPEATED instances where, in any given thread, a poster makes a comment, it's replied to without quote functions in the subsequent post, and then days later is edited ruining the entire thread and making someone else look like some sort of dementia sufferer.  This does not occur in the real world, this sort of revisionism of discussion, and I see no reason it should occur here.

The bottom line is that a certain part of our posting members had some sort of naive false illusions of privacy on the internet that does not, and has never, existed.

Very well said Philly!   I agree with all of your points wholeheartedly!

To add to it I think some people have a fear of others outing them!   I just want to state here for the record I have run across people I know or recognize on her occasionally.   Just because I don't care if anyone knows I'm HIV+ doesn't mean I would ever out someone.   I would NEVER do that because I know that is a breach of privacy.

But, others will.   There are always the gossip queens who will out you in a drunken stupor at some club, maybe even at work.   The real concern of discloser lies within and isn't coming from external dark forces.

So, as we continue to beat this horse to death I think it's important that all realize that if you are sharing specific details and photos that can identify you, you only run the risk of outing yourself.   

If you want to share a particular experience you don't need to mention the name of club you went to or where you live or work which ironically those arguing most for this have revealed over in over while they continue to reignite the flames of mass hysteria!

Again, whether it's this site or another, use common sense!
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #94 on: February 18, 2007, 12:05:08 PM »
Very well said Philly!   I agree with all of your points wholeheartedly!

To add to it I think some people have a fear of others outing them!   I just want to state here for the record I have run across people I know or recognize on her occasionally.   Just because I don't care if anyone knows I'm HIV+ doesn't mean I would ever out someone.   I would NEVER do that because I know that is a breach of privacy.

But, others will.   There are always the gossip queens who will out you in a drunken stupor at some club, maybe even at work.   The real concern of discloser lies within and isn't coming from external dark forces.

So, as we continue to beat this horse to death I think it's important that all realize that if you are sharing specific details and photos that can identify you, you only run the risk of outing yourself.  

If you want to share a particular experience you don't need to mention the name of club you went to or where you live or work which ironically those arguing most for this have revealed over in over while they continue to reignite the flames of mass hysteria!

Again, whether it's this site or another, use common sense!

Yeah, it's really no different than the pre-internet days.  If you were in the closet and you decided to go make a foray in the gay bookstore or peep show booth, there was the slight chance that you'd run into your 3rd cousin once removed right in front of the place.  The same situation exists here, it's just a matter of what degree of risk one wishes to take.  I mean *HELLO* why do you think there are always so many "Guests" reading the forums.  One you make the decision to register you've committed to and endless amount of choices of how much of yourself to share depending on your personal disclosure situation.

I'm just glad I don't deal with it anymore.  But surely, I understand the concerns.  I just want people to be honest about where they are with this and what the realities of the internet are.  Basically people have an incorrect view of the internet... like because you sit alone in a room at home staring at your screen that it equals some level of privacy.  It's very illusory.

Oh, and haven't we all gossiped when drunk? :)
"Iíve slept with enough men to know that Iím not gay"

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #95 on: February 18, 2007, 12:30:19 PM »
LOL, at the last comment Philly. 

I wonder do these people so afraid leave thier home ever?   I mean I think you've brought up a good point Philly.   We all run the "risk" of being outed when we're at doctors appointments or at an ASO.   You think those people don't talk?

Some of the worst cases I've seen have come from HIV counselors themselves.   

Actually, one of the ASO's here locally had to shut down it's support program recently due to 2 of the members as I understand it going out and talkin smack about em at the clubs.   I've never been to that one, but it sounds like a mess still. 

What about AA and NA meetings?  Those groups don't make you sign a waiver in case some author decides to sneak in and do a tell all?

To me this issue of internet fear is all avoidable by taking the most basic steps to protect your privacy, but what ya gona do in the real world?   Continue to live in fear and hide?

Personally, I'm not gona let that fear control me.  I realize we are all at different stages with the disclosure issue.   For me, it was very liberating.

I fail to see the CSI forum as a real threat (provided common sense is used).    I don't know maybe people been reading too many John Grisham novels or something!






Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Cliff

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Re: Formal complaint about the CSI connection
« Reply #96 on: February 18, 2007, 12:45:34 PM »
Wesley & Philly,

You guys don't get it and I doubt anyone could restate the issues in such a manner to help you understand what our concerns are.  Your comments aren't helpful.  In fact, they are down right condesending and silly. 

Everyone here knows this is the internet (and if we didn't, you guys repeating it in every single message certainly would have made that obvious fact clear by now). 

And we definitely don't need you to dramatize our valid concerns into something completely over-the-top, (hint: your "I wonder do these people so afraid leave their home ever" comment is out-of-line).

You two have no intentions of discussing this issue intelligently and respectfully.  You're just here to kick up dirt.  You don't get it!  okay.  Just accept it and stop trying to "help."  Cause you're not.

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #97 on: February 18, 2007, 12:56:26 PM »
Cliff, I don't see any of my comments as being condescending, thought the one you selected belonged to Wesley and I can see how that one was condescending.  I think my views as expressed are quite realistic, and they basically apply to people on the board that have expressed some sort of surprise that they posted pictures on threads like the "Porn" one in Off Topic showing their face, yet they're hyper-sensitive about either gay or HIV disclosure.  I've simply stated that I don't comprehend doing such a thing, and tried to state some examples pre-dating the internet when I was concerned with disclosure issues and the types of personal negotiation that must be considered individually.  Obviously some people here NEED to be reminded of the open sense of the internet.

It's a shame that you need to label a view contrary to yours as condescending.  If you could point out a particular example of where I have done this I will be more than happy to apologize.  I have TWO posts in this thread that you have authored, and I see no particularly "kicking up dirt" commentary in my posts. 
"Iíve slept with enough men to know that Iím not gay"

Offline RAB

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Re: Formal complaint about the CSI connection
« Reply #98 on: February 18, 2007, 01:02:09 PM »
Ann

(with apology for the temporary hijack)

However this plays out, I am certain that those members who have remained silent and are feeling very anxious and confused, have found your heartfelt words of understanding and empathy to be the most calming of anything that has been said.

I've watched these past few days how many hours you've been logged in, I've read every word you've written.

You lady have been an absolute trooper.  I don't know how or why you continue to give so freely of youself, but I do know one thing, that gift makes these forums a better place.

Thank you.

RAB


(we now rejoin our topic at hand)

Offline dtwpuck

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Re: Formal complaint about the CSI connection
« Reply #99 on: February 18, 2007, 01:02:51 PM »
So, as we continue to beat this horse to death ....
   You mean it's not dead yet?  I was just about to take stock out in Elmer's.
Floating through the void in the caress of two giant pink lobsters named Esmerelda and Keith.

Offline NycJoe

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Re: Formal complaint about the CSI connection
« Reply #100 on: February 18, 2007, 01:10:17 PM »
This is a website..this is the internet.  Its open for ANYONE and everyone to see.  Case closed.  If you don't want people to know you are HIV positive then remain anonymous.  IF you want to reveal yourself by picture or name do it my private message or email.  This is the most ridiculous argument I have seen on here.  Kudos to all the moderators etc who work so hard trying to make everyone happy and always falling short in some way.

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #101 on: February 18, 2007, 01:38:58 PM »
LOL @ Puck!

Cliff,  I have not suggested your thoughts are "silly" as you have mine.

If this isn't a case of the pot calling the kettle black I don't know what is.

Cliff, you are the one doing the fingerpointing here.   I don't mind because you haven't personally attacked me, just my views while trying to throw more gasoline on this fire you started.

In fact, I like you from everything I've read you are a pretty articulate guy.   I think your just exhausting yourself on this subject and it's time to move on.   

Stiring up a bees nest of panic doesn't help the situation.   CSI is here to stay so take precautions and bear with it and I'm certain you will come out unscathed.   

I would appreciate you not finger pointing when I am making generalizations, but I know this issue upsets you so I will let it go.

Peace,

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline RAB

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Re: Formal complaint about the CSI connection
« Reply #102 on: February 18, 2007, 01:56:26 PM »
This issue isn't nearly as simple as some members seem to be making it.  It's complex, it's human, it demonstrates yet again how HIV impacts people in so many ways.

The only complaint I have about Peter's decision isn't personal.  It's something deeper and broader, it can't be dismissed with broadly worded proclamations.

It's the impact it will have on people who have gained so much from the power of these forums.

Doctors, lawyers, teachers, clergy, husbands, wives, fathers, mothers, dishwashers, executives, business owners, you name it.  Those who felt so overwhelmed by their HIV diagnosis and feared someone finding out, came to these forums for support and information.  As they grew more and more comfortable they began to expose more of themselves.  That wasn't "naive", it was driven by a real human need for healing as far as I'm concerned.  That may be the major unintended consequence of this whole thing.  That  level of safety has been erased.  That's what I fear.

RAB

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #103 on: February 18, 2007, 02:03:38 PM »
I still think that by taking realistic precautions (not posting your photo anywhere here, not using your name, nickname, saying what town you live in, etc.) that you can get proper support here with no danger of disclosure.
"Iíve slept with enough men to know that Iím not gay"

Offline NycJoe

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Re: Formal complaint about the CSI connection
« Reply #104 on: February 18, 2007, 02:13:50 PM »
I agree Philly.  It is quite possible to find support and get all kinds of information on here without posting ones picture and name.  It is a choice. 

Offline Life

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Re: Formal complaint about the CSI connection
« Reply #105 on: February 18, 2007, 02:15:08 PM »
Good greif, this CSI stuff has "virused" out to other parts of this site... Thats what really sucks for me... I for one could care less about the media,  in fact I hate even reading about it... But now its in my recovery to??   crap......  Just crap...

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #106 on: February 18, 2007, 02:21:18 PM »
I have to agree with Eric.   Contaminating other threads has gotten out of hand!   Let's try to keep the CSI issue here!

I wanted to share a link about the whole privacy issue which might be of interest to many here.   I couldnt' find the exact article I first read, but if you live in Massachusetts you might want to read this article:

http://media.www.dailyfreepress.com/media/storage/paper87/news/2007/01/29/News/Hiv-Name.Disclosure.Brings.Privacy.Issues-2683159.shtml

Just thought it might be of interest.   There are some issues of privacy being breached, and I hear there is some uproar over the deal there, but would like to hear if anyone knows the details.   Of course, in this case actual names are being used. 

Don't know if this is happening in all states, but know my friend in Boston wasn't happy bout it.   

Anyways, I thought it might be beneficial to point out an actual issue rather than a percieved one.   Ultimately, people get outed everyday whether CSI gets renewed or not.

Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline DanielMark

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Re: Formal complaint about the CSI connection
« Reply #107 on: February 18, 2007, 04:44:12 PM »
I still think that by taking realistic precautions (not posting your photo anywhere here, not using your name, nickname, saying what town you live in, etc.) that you can get proper support here with no danger of disclosure.

THANK YOU, Philly! I applaud your uncomplicated explanation.

It really doesn't take a whole lot of imagination to post about things without blatantly giving away an identity either.

Daniel
MEDS: REYATAZ & KIVEXA (SINCE AUG 2008)

MAY 2000 LAB RESULTS: CD4 678
VL STILL UNDETECTABLE

DIAGNOSED IN 1988

Offline aupointillimite

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Re: Formal complaint about the CSI connection
« Reply #108 on: February 18, 2007, 05:02:46 PM »
It really doesn't take a whole lot of imagination to post about things without blatantly giving away an identity either.

Well, it looks like my "let's compare social security numbers" thread idea should be tossed out.

Poop.
Your tastebuds can't repel flavor of this magnitude!

Offline poet

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Re: Formal complaint about the CSI connection
« Reply #109 on: February 18, 2007, 06:27:48 PM »
Yeah, it's really no different than the pre-internet days.  If you were in the closet and you decided to go make a foray in the gay bookstore or peep show booth, there was the slight chance that you'd run into your 3rd cousin once removed right in front of the place.  The same situation exists here, it's just a matter of what degree of risk one wishes to take.  I mean *HELLO* why do you think there are always so many "Guests" reading the forums.  One you make the decision to register you've committed to and endless amount of choices of how much of yourself to share depending on your personal disclosure situation.

I'm just glad I don't deal with it anymore.  But surely, I understand the concerns.  I just want people to be honest about where they are with this and what the realities of the internet are.  Basically people have an incorrect view of the internet... like because you sit alone in a room at home staring at your screen that it equals some level of privacy.  It's very illusory.

Oh, and haven't we all gossiped when drunk? :)


I am reminded of two things per Philly's post.  First, I have had any number of guys who called me when I was doing anonymous (phone only, pre-caller id days) about what if's, 'what if I run into my boss at a gay bar?' including my first boyfriend who worried about running into one of his students.  Well, guess what?  If you run into your boss you both know something about each other rather than his knowing something only about you. 

The huge difference is that disclosure of sexuality is very different from disclosure of being hiv positive and this difference is critical to these forums and we all, perhaps, need to watch and think for each other when reading posts: 'are you sure that you want to post this?' via p.m. being an option.

Second, escorts used to or may still use AOL chatrooms to advertise their services.  I could never seem to get across to them that, having seen the transcripts used in court, there were any number of federal agents and local vice squad officers online trying to trip them up, getting them to offer sex for money: prostitution.  I could never get them to grasp that you have to assume that the person in the chatroom, the person on the phone is someone you don't want to have this conversation with.  And they were frustrated because how do you have a conversation wtihout having it? 

I am not equating what goes on here with this, but do see parallels, the challenge being, as stated throughout this thread, how do we have intimate, personal, deep discussions which may at times need to cross into admissions or confessions without which they might have little value?  A post, for example, from someone who lives in a state which prosecutes acts of unsafe sex by persons who know that they are hiv positive.  Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline Longislander

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Re: Formal complaint about the CSI connection
« Reply #110 on: February 18, 2007, 07:13:58 PM »
I get it. The internet is WIDE OPEN. I will no longer tell anyone here in an open forum where I've been or where I'm going.

BUT BUT BUT- The damage is done. I did not know when I posted about my vacation, that the forums were about to be open to, and an explicit invitation was to be issued to, all the people who watch a TV show BASED IN MY OWN STATE. And I can't go back and take out identifying stuff. No I didn't give out my SS#, or my address, and my e-mail addy is hidden. No lingering face pics.  But I used my first name. I stupidly chose an identifying username. Based on the casual mentioning of things, if someone popped in here and knew me, they would be able to identify me.

You didn't have to catch the tiny knowhivaids.com URL at the end of the show to wind up at these forums. JUst go to CBS.com, right there on the opening page, 2 clicks, and you're here. In fact you are so directed here , because there are no other options for clicking at that Zueker guy's page.

Of course I'm not going to do it in the future, but the old stuff is right here. If I was having a personal conversation in a room with you, Philly, I would tell you stuff about me based on who you are that I am talking with. I don't walk into a bar/club, and announce my status to all I meet.

I have also noticed that most of those who have no issue with this CSI stuff, are either already HIV/AIDS activists in one way or another, are home on disability, or retired.

I love the way these things go. Those of us expressing fear and concern are constantly being criticised and belittled by those who don't have the fear/concern.

Wesley, buddy, you should know that feeling first hand from the thread you made about your fear of starting meds. Your fears and expressions of concern about meds were belittled repeatedly.
« Last Edit: February 18, 2007, 09:10:05 PM by Longislander »
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline NycJoe

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Re: Formal complaint about the CSI connection
« Reply #111 on: February 18, 2007, 07:26:41 PM »
I have had no issue with this CSI stuff as it is called and I am an activist of no kind unfortunately.  This is due to the fact of being an adult full time student, studying and working 2 jobs. I am not on disability nor am I retired obviously.  I would never belittle anyone for their feelings.  I just always figured that by curiousity or worry that chances are friends/family or even co-workers of mine could always come by this site and therefore I never revealed myself on here because I felt it should be by me when I was ready.  My name is very common..there must be tens of thousands of Joes online in New York and I never revealed much about myself personally in a forum unless it related more directly to hiv itself.  However I have revealed much more in pms or emails.  Again..this is a choice.  There is no right or wrong. Just be careful of the choices you make.  It has been said a million times..this can be an hiv-anonymous site if you would like it to be or you can choose to "out" yourself on here. It is always best to err on the side of caution no matter what route you choose for yourself.

Offline Peter Staley

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Re: Formal complaint about the CSI connection
« Reply #112 on: February 18, 2007, 08:07:32 PM »
You didn't have to catch the tiny knowhivaids.com URL at the end of the show to wind up at these forums. JUst go to CBS.com, right there on the opening page, 2 clicks, and you're here. In fact you are so directed here , because there are no other options for clicking at that Zueker guy's page.

Longislander -- just to be clear, the link from the knowhivaids.org Zuiker letter page does not lead "here", as in the Living With forum.  It leads directly into the CSI forum.  To our knowledge, almost all of those that have entered our forums by hitting the CSI forum first have not ventured (or even found) the other forums.  I doubt this will ease your concerns, but I want to offer you and others the facts as we know them.

Also, there are 3 links on the Zuiker page:  one to knowhivaids.org home page, one to Kaiser's home page, and the one to our CSI forum.

Peter
« Last Edit: February 18, 2007, 08:22:26 PM by Peter Staley »

Offline tigger2376

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Re: Formal complaint about the CSI connection
« Reply #113 on: February 18, 2007, 09:07:21 PM »
I'm in the UK and embarassingly,or thankfully, havent seen the CSI you are discussing. I agree with so many of the,(sometimes opposing) posts its difficult to be succinct BUT. I have found this site to be supportive,informative and a great resource. I,like so many others have shared things that are deeply personal and have appreciated all the help,good wishes and love that has been shared with me. (Most of) the people I have talked to have been just awesome,putting up with me whilst I'm trying to get along with living with HIV,my confusion and my whinges!. Yes,I'm a bit protective of my safe haven being exposed but hey, if one person uses a condom because of this,we're winning guys! I'm not trying to preach, I see both sides but frankly if anyone hurts any of the insanely funny,caring and wonderful people on here because of CSI, I'll  make sure they need a real forensic team! (JOKE). I don't care who started this site and I'm deeply grateful to whoever did. My worst,maybe, habit on these forums is getting emotional, but I feel passionate about this.
On the sorta same lines I'm going on UK  BBCTV to talk about my own personal  experience,taking a huge risk, but feel that I cant sit on my butt and whine if services are being cut,I'm treated badly and HIV is still so stigmatised if I'm not prepared to TRY to make a difference. I'm not a saint,drama queen,do-gooder or attention seeker, just a 40 year old woman with HIV.
Really hope this post isn't too intense, and warned you it was difficult to be succinct! Yours loquatiously(sp) Joh
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline Longislander

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Re: Formal complaint about the CSI connection
« Reply #114 on: February 18, 2007, 09:16:53 PM »
Quote
Also, there are 3 links on the Zuiker page:  one to knowhivaids.org home page, one to Kaiser's home page, and the one to our CSI forum.

I get what you're saying Peter, I went back and yes, you can get to the other two sites from Zuikers, as they're underlined in the body of his letter (?). But the only reason people got to that page was because they clicked a link to the Stella /CSI blog forum to participate. Odds are they'll skip the Kaiser foundation site and the knowHIVaids site, so they can get on with the forum blogging stuff.
infected 10/05 diagnosed 12-05
2/06   379/57000                    6/07 372/30500 25%   4/09 640/U/32% 
5/06   ?? /37000                     8/07 491/55000/24%    9/09 913/U/39%
8/06   349/9500 25%              11/07 515/68000/24     2/10 845/U/38%
9/06   507/16,000 30% !          2/08  516/116k/22%    7/10 906/80/39%
12/06 398/29000 26%             Start Atripla 3/08
3/07   402/80,000 29%            4/08  485/undet!/27
4/07   507/35,000 25%            7/08 625/UD/34%
                                                 11/08 684/U/36%

Offline David_CA

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Re: Formal complaint about the CSI connection
« Reply #115 on: February 18, 2007, 09:41:40 PM »
This issue isn't nearly as simple as some members seem to be making it.  It's complex, it's human, it demonstrates yet again how HIV impacts people in so many ways.

The only complaint I have about Peter's decision isn't personal.  It's something deeper and broader, it can't be dismissed with broadly worded proclamations.

It's the impact it will have on people who have gained so much from the power of these forums.

Doctors, lawyers, teachers, clergy, husbands, wives, fathers, mothers, dishwashers, executives, business owners, you name it.  Those who felt so overwhelmed by their HIV diagnosis and feared someone finding out, came to these forums for support and information.  As they grew more and more comfortable they began to expose more of themselves.  That wasn't "naive", it was driven by a real human need for healing as far as I'm concerned.  That may be the major unintended consequence of this whole thing.  That  level of safety has been erased.  That's what I fear.

RAB


Well put, RAB (should I even continue to use people's first names?)  I haven't posted much about this topic, although it's bothered me quite a bit.  I couldn't quite put my finger on what specifically bothered me.  You've nailed exactly why this 'change' bothers me.   

I realize that the internet isn't a place of privacy, especially on an open forum.  I look at it, in a way, as sitting in a restaurant eating with a friend.  I don't expect a lot of privacy in that setting, but I also don't expect somebody to lean over and listen to every word I say ... to draw attention to what I've said even.  Common courtesy doesn't seem to be part of the management of these forums.  Sometimes, we have really bad days and post info about ourselves that maybe we shouldn't.  If we didn't need help and support, most of us wouldn't be here.  Why punish us by not allowing us to edit out things that maybe shouldn't have been posted?  How about allowing us to PM a moderator, when something needs to be edited for the sake of privacy, and having them do the edit?  It's keep us from completely deleting posts and 'sabotaging' the forums.  Who knows, maybe these threads will end up published sometime.  Wouldn't that reduce the marketability of what we've written?

What is in really poor taste, and quite tacky, is the sudden 'need' to lock posts after 48 hours.  I know three posters in this thread specifically will say that I should think about what I write before I post, etc, etc.  I do think about what I write prior to posting.  That doesn't mean that I get across exactly what I mean, and sometimes days later, in re-reading my post, I see things that are vague, typos, etc and like to correct them.  After all, if what I post is going to belong to somebody else, maybe even find its way into some other media, I'd like it to be correctly written.

A while back, there was a somewhat similar to-do about excerpts from posts being on the Poz home page.  I remember many members being upset about this.  I find it really hard to believe that the powers that be wouldn't think that members would also be upset by the newest 'change'.  I'm not sure about the financial benefits to those in charge, but when money is involved, most other concerns seem to go out the window. 

More than anything else, I'm disappointed.  I'm disappointed in how this CSI thing was handled.  I'm disappointed that a sub-domain (or something similar) wasn't used to 'shield' us a bit more.  I'm disappointed in how personal info that may have been revealed in a lapse of judgement can't be removed.  I'm disappointed that those members who argue a point just for the sake of arguing won't step back and see that people are upset and quit trying to make them feel stupid (like saying the internet's not private, etc.).  I'm also disappointed that several members I like and respect won't post much, if at all, due to all the new publicity. 

I hope that most of us are wrong and that we get more privacy and security from this, but I doubt it'll happen.  Nice move, guys.

David
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline skeebo1969

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Re: Formal complaint about the CSI connection
« Reply #116 on: February 18, 2007, 09:57:01 PM »


   David this is why.... This is exactly why I have always cared for you my friend....  EXACTLY!!  You said it better than I ever could have...   Amen brother!!
I despise the song Love is in the Air, you should too.

Offline tigger2376

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Re: Formal complaint about the CSI connection
« Reply #117 on: February 18, 2007, 09:59:05 PM »
ROUND OF APPLAUSE NC. Just what I wanted to say,just tried to be fair. Use a real name,have spilled my guts....who asked my permission to put the site in the spotlight? OK, internet is an open and sometimes invasive place, but this site is my refuge. Where was the consultation? I think this was deliberatley done at short notice by the programme makers
I know i'm going to enjoy the party in the afterlife, but do you all mind that I'm going to be VERY late!!!

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #118 on: February 19, 2007, 02:19:19 AM »
Tigger,  have you ever started a group or tried to run one?   Please don't take this as a personal attack, but I gotta say it ain't easy and sometimes you have to make difficult decisions for the benefit of everyone on short notice.


Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline David_CA

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Re: Formal complaint about the CSI connection
« Reply #119 on: February 19, 2007, 06:05:14 AM »
Tigger,  have you ever started a group or tried to run one?   Please don't take this as a personal attack, but I gotta say it ain't easy and sometimes you have to make difficult decisions for the benefit of everyone on short notice.




You're assuming that this benefits us.  This is NOT a new website... well, the aidsmeds.com website isn't new.  This isn't a 'time out' given to a user for an offensive post.  This was not a 'normal' website decision.  No, we're talking about a SPECIFIC action of dubious benefit, not something like a software revision that changes how users log in.  Sometimes those decisions that seem 'hard' are, and that's because they need to be thought out.  Ever had a high-pressure sales pitch thrown you?  I generally walk away if I'm not given time to think about the consequences. 

Hmmm, let's invite the local news and the general public to our support group?  Well, maybe not that, but let's invite them to an AIDS / HIV meeting in the room right next door to our support group and have the meetings run concurrent.  Maybe the news and the general public won't see us coming and going from our support group.  This is the point that's being made.

David

edited 'cause my built-in spell checker missed the same misspelled word as the Forum's spell checker missed!
« Last Edit: February 19, 2007, 06:10:48 AM by David_NC »
Black Friday 03-03-2006
03-23-06 CD4 359 @27.4% VL 75,938
06-01-06 CD4 462 @24.3% VL > 100,000
08-15-06 CD4 388 @22.8% VL >  "
10-21-06 CD4 285 @21.9% VL >  "
  Atripla started 12-01-2006
01-08-07 CD4 429 @26.8% VL 1872!
05-08-07 CD4 478 @28.1% VL 740
08-03-07 CD4 509 @31.8% VL 370
11-06-07 CD4 570 @30.0% VL 140
02-21-08 CD4 648 @32.4% VL 600
05-19-08 CD4 695 @33.1% VL < 48 undetectable!
08-21-08 CD4 725 @34.5%
11-11-08 CD4 672 @39.5%
02-11-09 CD4 773 @36.8%
05-11-09 CD4 615 @36.2%
08-19-09 CD4 770 @38.5%
11-19-09 CD4 944 @33.7%
02-17-10 CD4 678 @39.9%  
06-03-10 CD4 768 @34.9%
09-21-10 CD4 685 @40.3%
01-10-11 CD4 908 @36.3%
05-23-11 CD4 846 @36.8% VL 80
02-13-12 CD4 911 @41.4% VL<20
You must be the change you want to see in the world.  Mahatma Gandhi

Offline Dennis

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Re: Formal complaint about the CSI connection
« Reply #120 on: February 19, 2007, 08:17:25 AM »
When I was first promoted to management, I promised myself that I would never forget about the employees; the heart of the company that actually keeps us in business.  In the beginning, that mindset kept me from making the "right" decisions.  Afterall, my primary responsibility is the bottom line and the company's p&l.  I found out the hard way that sometimes decisions need to be made that may not always be popular with my staff.  And that I would possibly lose a good employee or two because of my decision.  However, that decision would ultimately wind up benefitting EVERYONE for the long haul. 

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #121 on: February 19, 2007, 08:38:00 AM »
I still think that by taking realistic precautions (not posting your photo anywhere here, not using your name, nickname, saying what town you live in, etc.) that you can get proper support here with no danger of disclosure.

THANK YOU, Philly! I applaud your uncomplicated explanation.

It really doesn't take a whole lot of imagination to post about things without blatantly giving away an identity either.

Daniel

Thanks for the agreement, yours among many Daniel.  My common sense approach was earlier described as being "condescending", an apology for this overly emotional and ungrounded accusation, of course, has so far not appeared to me.
"Iíve slept with enough men to know that Iím not gay"

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #122 on: February 19, 2007, 08:49:18 AM »
snip

You know, I post on this other board populated by youngish-ist cyber freaks who set up their own board (and it's quite democratically structured as it was  a response to another Mac board where the mods were perceived as tyrants) and they have set up certain sections of the forums for "sensitive" subjects (NSFW, P2P stuff) where you must register separately from the normal registration, and thus be a known member of the board for a few months... this weeds out the pigs in the community "in theory.  Not sure if that could be done here for the uber-disclosre paranoid but it may be worth consideration.

Please keep in mind, I am EVER EVER so considerate of those that have disclosure issues.  I had such (well, of some sort... only family related, not close friends or co-workers as I lived five states away) but I totally understand it.  I still go by what I stated though in that the posting pictures of those that wish to remain anonymous was the utmost in naivety but we all make misjudgments.

Anyway, I still think it's all a red herring.  SIMPLE PRECAUTIONS as I stated above will eliminate the need to even implement such intricate restructuring as I just offered in this posting.  COMMON SENSE FOLKS.
"Iíve slept with enough men to know that Iím not gay"

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #123 on: February 19, 2007, 08:55:20 AM »
I stupidly chose an identifying username.

There are 8 million people on Long Island.  I'm not sure I'd worry about that one.  The other things you mentioned yes.

However, if it makes you more comfortable I bet the mods have ability to change your username without losing your postcount and other stats, as well as link to all previous postings.  We can do this on other forums I use.

The important thing is that going forward you feel comfortable until the time comes that you are ready to disclose to your family, friends, etc.

Trust me, I understand your paranoia -- I have been there, and for longer than you probably will end up being.

Ad the very least you could re-register with a different name.  Have the mods replied to your requests to take down the photos you put up?  I think they should at least do that, considering the sudden change in rules.
"Iíve slept with enough men to know that Iím not gay"

Offline AustinWesley

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Re: Formal complaint about the CSI connection
« Reply #124 on: February 19, 2007, 08:59:32 AM »
You're assuming that this benefits us.  This is NOT a new website... well, the aidsmeds.com website isn't new.  This isn't a 'time out' given to a user for an offensive post.  This was not a 'normal' website decision.  No, we're talking about a SPECIFIC action of dubious benefit, not something like a software revision that changes how users log in.  Sometimes those decisions that seem 'hard' are, and that's because they need to be thought out.  Ever had a high-pressure sales pitch thrown you?  I generally walk away if I'm not given time to think about the consequences. 

Hmmm, let's invite the local news and the general public to our support group?  Well, maybe not that, but let's invite them to an AIDS / HIV meeting in the room right next door to our support group and have the meetings run concurrent.  Maybe the news and the general public won't see us coming and going from our support group.  This is the point that's being made.

David

edited 'cause my built-in spell checker missed the same misspelled word as the Forum's spell checker missed!


Hey David,

I'm not assuming anything, but I am willing to give the benefit of the doubt to Peter at this point.

Who's the WE you talk about that you are claiming "Dubious Benefit"?  

I understand your frustration, but previously I had mentioned the scenario of AA or NA.  What's to keep a next door group of fanatical fundamentalists harassing them?   Nothing!

The news channels have much more interesting stories to cover such as Myspace and Dateline online predators.   I don't think anyone's inviting them here.

And, to be honest I have seen news stories on dating sites before, but it was only because someone had been raped or murdered.    Even those didn't highlight specific profiles.

Wesley
Diag. 3/06  Infected aprx. 2 mo. Prior
Date        CD4   %      VL
4/6/06     627    32    36,500     NO MEDS YET!
6/7/06     409    27    36,100
8/23/06   408    25     22,300
1/2/07     354    23     28,700
2/9/07     139    30     23,000  Hep A Vaccine same day???
2/21/07   274    26     18,500 
3/3/07    RX of Truvada/Sustiva Started.
4/5/07    321     27      Undectable 1st mo.  
5/16/07  383     28    Undectable 2nd mo.
8/10/07  422     32   UD <48 on new scale!

Offline Florida69

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Re: Formal complaint about the CSI connection
« Reply #125 on: February 19, 2007, 09:55:19 AM »
This is so scary.. I have just scanned this debate, I do that from time to time on these forums and just want to say if I wasn't afraid to strike up conversation before now, my goodness, I think that I am terrified.  You guys we all have to be true to ourselves first and foremost.  On the internet nothing is really private, you do have abilities on some levels to mask who you are, and where you are from.  Just so you guys know in the United States there is really no actual right to privacy.  In my lowly mindset I was thinking that the CSI story lines would add a little acceptance to our plight, now I am not so sure how I feel. I have to say that ABC with the General Hospital show with the HIV+ doctor has really educated a lot of people.  I have not watched the episode, but I will.   I usually can not stomach the show due to some of the gore, gives me nightmares, besides I have enough drama in my real life not to have to endure more from the television.  Good luck to you guys on this one, it would be nice if some of the money made off of the show would go to help fund some of the HIV/AIDS programs like Ryan White, which our government is cutting seriously.  That of course would mean we live in a perfect world.  D
Nothing in the world can take the place of Persistence. Talent will not; nothing is more common than unsuccessful men with talent. Genius will not; unrewarded genius is almost a proverb. Education will not; the world is full of educated derelicts. Persistence and determination alone are omnipotent. The slogan 'Press On' has solved and always will solve the problems of the human race.
Calvin Coolidge

Offline carousel

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Re: Formal complaint about the CSI connection
« Reply #126 on: February 19, 2007, 11:57:54 AM »
When I logged on last week to find out this site was being advertised on American TV as a place where viewers of CSI whatever it's called, I was shocked.  My first action was to start deleting my posts.  The easier way would have been to take down my pic, which I did later. 

Why didn't I feel comfortable with people reading my posts?  Well, for many of the reasons above.  I've posted very personal information about myself, which I was not ready to share with all the world.  Yeh, I know it's the Internet.  But unless you are looking for information on this topic, I think that most people are not going to hit this site.  Perhaps, I shouldn't have posted about the things I did, but I fekt safe.

From easing myself out of the closet, I suddenly felt doors slamming.  Part of it was just the shock of the way that it was announced.  Maybe if I'd have had more time to think about it, I would have made a different decision, but not being offered any choice, I did what I did.

This website has been an invaluable source of support fr me.  It's where I come to unwind.  I did not come here to educate people who are not HIV.  I came here because I wanted to tell people how I was feeling and get support from other HIV people or sometimes just talk and have a laugh.

This episode has really saddened me.  To see people take down their pictures or leaving suddenly because they don't feel safe is depressing.  I suddenly don't feel safe in a place that was very special to me.

What next?  Do I just walk away and try something else or am I just expected to weather the storm until it is sorted out.

Carousel (I would post my real name, but hey)

Online Miss Philicia

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Re: Formal complaint about the CSI connection
« Reply #127 on: February 19, 2007, 12:13:34 PM »
Well, I will add that my one gripe with the CSI conflama was that it was announced ONE day before it began, and I know it's been explained it happened like that kind of out of Peter's control.

Still... that's the major sticking point and hopefully we can avoid such things in the future.
"Iíve slept with enough men to know that Iím not gay"

Offline poet

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Re: Formal complaint about the CSI connection
« Reply #128 on: February 19, 2007, 03:47:24 PM »
My response today was to change my profile so that my first and last name is now present.  I have done so in the hope that it may balance things a bit for some of us, recognising that Peter, Andy and others are able to be present here with pics and full, real names and life goes on.  I would not recommend this, because not everyone lives where we do, not everyone works where we do, not everyone has been out as long as we have been out connected to hiv/aids elsewhere anyway, making here just another place.  I absolutely understand and support reactions which some have had, to think about leaving, to delete where possible, to use avatars.  Unfortunately, as with gay rights, if some of us don't step forward and face outward, progress slows.  Best, Win
Winthrop Smith has published three collections of poetry: Ghetto: From The First Five; The Weigh-In: Collected Poems; Skin Check: New York Poems.  The last was published in December 2006.  He has a work-in-progress underway titled Starting Positions.

Offline bocker3

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Re: Formal complaint about the CSI connection
« Reply #129 on: February 19, 2007, 04:18:42 PM »
Holy Crap -- I go away on a much needed vacation and all hell breaks loose here!!!   ;) ::)
I haven't read everything connected with this (I would need another vacation) and have not seen the CSI episode (has it aired?? I'm guessing there will be a few of them with this storyline), but I do have an opinion.

Let's all take a breath and think about this -- I don't think that we are all in danger of being outed here.  I have not told anyone in my family and can not even imagine them coming here AND seeing my picture.  If that does happen, well then it will happen -- maybe I was supposed to tell them.  If I was really worried, I'd remove my picture.

Now, I will agree with Eric -- this "issue" has seemed to take over the forums and that is NOT GOOD.  Let's get back to what we are here for and stop worrying about the sky falling -- or at least let's not carry into every thread.

Mike
Atripla - Started 12/05
Reyataz/Norvir - Added 6/06
Labs - Pre-Meds
Sep05 T=350/25% VL98,559
Nov05 288/18%  47,564
Current Labs
May2013 691/31% <20

 


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