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Author Topic: Paying it Forward - As a Way of Living with HIV  (Read 3514 times)

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Offline HIVSince1995

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Paying it Forward - As a Way of Living with HIV
« on: April 10, 2020, 12:09:21 pm »

POZ Itself is HIV bashing on the forums.

There is no excuse for the 3 post limit on the "Am I Infected" section of the POZ  forum.  It's 3 posts for all time.

Experience, strength and hope from long term PLWHIV is denied to people scared out of their minds while moderators act as bullies deleting posts in other sections.

POZ is blocking members who might be able to offer some sage advice on how to be brave enough to get tested and how to make a plan to stay on treatment.

A vast wealth of knowledge and decades of experience is lost to the most vulnerable members.

Oh, but there is hope!  If a member is willing to pay $9.99 to supplement the enormous amounts the drug companies pay POZ, then they can post as much on the "Am I Infected" section as they'd like.

THERE IS ENOUGH FEAR, BASHING AND SWINDLING OF PLWHIV WITHOUT POZ ADDING TO IT WITH THIS SOLELY PROFIT CENTERED POLICY ON THE FORUMS

Please, show some compassion and a bit less concern for making money and change this policy.
« Last Edit: April 10, 2020, 02:15:40 pm by Jim Allen »
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline Jim Allen

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Re: Paying it Forward - As a Way of Living with HIV
« Reply #1 on: April 10, 2020, 02:04:01 pm »
Hiya,

I have removed the 13 duplicate postings you made across the multiple sections of the forum, once is more than enough per topic and some of the sections you should not even be posting in.

Quote
POZ Itself is HIV bashing on the forums.

There is no excuse for the 3 post limit on the "Am I Infected" section of the POZ  forum.  It's 3 posts for all time.

Experience, strength and hope from long term PLWHIV is denied to people scared out of their minds while moderators act as bullies deleting posts in other sections.

You are entitled to feel that way, and there is indeed a posting limit. The volunteers do try to give as much safer sex info in one go where possible. People who feel they can contribute including LTS are also welcome to put their names forward as volunteers.

"Am I infected" posters are also indeed limited to posting within their section, no denying that. The rest of the forum is mainly focused on people living with HIV.

https://forums.poz.com/index.php?topic=220.0

Whilst we all have compassion, also consider many PLHIV have expressed wanting to maintain a safe place focused on living with HIV where they can post without being confronted or trolled by "Am I Posters", this includes myself, I admit. If you feel differently that's fine, but respect that others might not share that view.

Quote
POZ is blocking members who might be able to offer some sage advice on how to be brave enough to get tested and how to make a plan to stay on treatment.

A vast wealth of knowledge and decades of experience is lost to the most vulnerable members.

That's a serious and as far as I know, a baseless accusation, if a PLHLIV indeed has been blocked i.e banned, it's always with good reason.

Decisions to time-out or ban a forum member are joint decisions and are thoroughly discussed beforehand. It's an exceptional, rare occurrence as we do not want to exclude people from these forums but at the same time, we need to keep this place safe for all.

Quote
Oh, but there is hope!  If a member is willing to pay $9.99 to supplement the enormous amounts the drug companies pay POZ, then they can post as much on the "Am I Infected" section as they'd like.

THERE IS ENOUGH FEAR, BASHING AND SWINDLING OF PLWHIV WITHOUT POZ ADDING TO IT WITH THIS SOLELY PROFIT CENTERED POLICY ON THE FORUMS

Please, show some compassion and a bit less concern for making money and change this policy

Regarding the profitability and model of forum subscriptions for "Am I posters",  I think you overestimate the volume but I truly can't comment on the finances of POZ.com or the statement regarding drug companies, if you want to address these complaints or accusations with POZ.com you can.  POZ can be contacted here: https://www.poz.com/iframe/contact-us

The swindling of people living with HIV is a really serious accusation.

I'll just say not to my knowledge and that as a forum member I've never had to pay a penny and, I also would not be alive today without this forum and the kind support from the fellow members I've received over the years.

Finally, asides from your issues with POZ.com, this thread is mainly flame-baiting and seems to have been started to question the moderator's decisions. It will be reviewed in full by the mod team but for the moment it's resulted in a warning and the thread has been locked.

Jim

https://forums.poz.com/index.php?topic=277.0
« Last Edit: April 10, 2020, 04:01:54 pm by Jim Allen »
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Offline HIVSince1995

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Re: Paying it Forward - As a Way of Living with HIV
« Reply #2 on: April 13, 2020, 02:26:37 pm »
Jim,


Since you've locked out any replies to my prior post (after banning me).  I will have to reply here.


First, yes, sorry, you are bashing the most vulnerable members of OUR community. 


I was watching people die in San Francisco while they were taking handfuls of AZT everyday in the 1980s and until the mid 1990s.  Maybe someone with a question about being infected might benefit from both my experience and the experience of many other long term PLWHIV.


We will never know, because I can't post more than three times in that forum.


The fact the the POZ forum moderators even have a name for those who post in the "Am I infected" forum as being "Am I Posters" clearly shows that this forum discriminates against the members of OUR community that are the most scared an vulnerable.


I will not give this mission up until either the POZ forum removes the "Am I Infected" forum and replaces it with a "We Can't be Bothered by People Who Question if they are Infected" forum OR the POZ forum removes the $9.99 a month fee for posting more than three times in the "Am I Infected" Forum.


Yes!  Hella Yeah!  I posted it in over a dozen forums.  Why?  Because, I couldn't post it in the "Am I Infected" forum as I have already reached my life time max of three posts!


I've held the hand of men who died of HIV, I've been to work on a Monday with co-workers who seemed fine aad were dead by the end of the week, I've attended more memorials for people who died of HIV while the president of the United States had failed to use the word in public, I've see the Silence=Death activists shut down rush hour traffic on the Golden Gate Bridge out of desperation to get someone (anyone) to pay attention, I've remember the "die ins" in front of the FDA where people had their bodies outlined in chalk and left as a reminder that OUR COMMUNITY WAS BEING KILLED OFF BY INDIFFERENCE AND AN UNWILLINGNESS FOR THOSE IN POWER TO ENGAGE.


Like it or not (and often I don't) POZ with all it's drug advertisements, has become the go to place online for people so scared they seriously don't know what to do next. 


When they arrive, they find a three post limit in the most important sub-forum.  When they move to another forum to continue, their posts are deleted because they should have posted their question in the "Am I Infected" Forum.  But, they can't because they don't want to add $9.99 a month to the giant profit POZ makes from drug advertisements.


Jim, I'm sure you do a great job.  I'm glad I got your attention.  You noticed my flames.  Good.  Because sometimes to get a powerful organization to act, they need to feel some heat.


After you banned me, Jim, I contacted some of your POZ's medical advisers and some of the staff.  Oddly the only answer I got back was that I wasn't banned. 


So, you see, flaming and making it hot works.


I know there is some irony in me acting as an activist against POZ which considers itself an activist.


In this case, the limit to three messages by "Am I Posters" (a shameful term), does make POZ the HIV basher and it needs to stop.  Seriously, Jim, it needs to stop.


Further, not allowing comments to my last message did shut down that one avenue I have to act as an activist and get POZ to open up that forum.  But, there are thousands of other ways to get this message into the public.


Why not open up this message and see how members feel?


If the POZ forum is supposed to be a safe place only for LT PLWHIV, then please put that at the top of the page.  Further, if the most vulnerable people - those wondering if they are infected - are not welcome, then put that at the top of the forum, "New HIV POZ and Those Worried About Being HIV POZ - This is ONLY for Long Term Surviors".


Jim, yes, you feel uncomfortable reading this.  The reason you feel uncomfortable is because you know that ignoring those afraid they may be POZ is wrong.


So, keep this post online and keep it open for comments.
« Last Edit: April 13, 2020, 02:31:14 pm by HIVSince1995 »
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline Jim Allen

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Re: Paying it Forward - As a Way of Living with HIV
« Reply #3 on: April 13, 2020, 03:15:26 pm »
Hiya,

Quote
After you banned me, Jim, I contacted some of your POZ's medical advisers and some of the staff.  Oddly the only answer I got back was that I wasn't banned.

You were not banned, that's just a lie that you like to tell yourself. I also am the one who kindly took the time to reply to you and explain that by email.

Now you are indeed getting a 7-day timeout for continued flame-baiting, see the rules here: https://forums.poz.com/index.php?topic=277.0 If you come back again it will be a longer ban. I hope you can move past this.

Quote
If the POZ forum is supposed to be a safe place only for LT PLWHIV, then please put that at the top of the page.

It is ... Some forums have different rules, the "Living with HIV section" where you feel HIV negative people should be able to post is very clear on this and so is the rules for the "Am I infected" section:

Living with HIV:
 "If you are living with HIV, you have come to the right place for support and information. Feel free to ask questions or even just come here to vent if that's what you need. Living with HIV can be a rollercoaster ride of emotions and no matter what you're going through, there's sure to be a forum member - or twenty! - who can empathise"

Am I infected:
With the exception of the “Am I Infected?” and “Off Topic” Forums, the POZ.com Forums are intended for people who have been diagnosed with HIV (or their loved ones/caregivers).  If you are questioning or unaware of your HIV status, please refrain from posting messages or questions in the Forums intended for HIV-positive people.

Quote
I will not give this mission up until either the POZ forum removes the "Am I Infected" forum and replaces it with a "We Can't be Bothered by People Who Question if they are Infected" forum OR the POZ forum removes the $9.99 a month fee for posting more than three times in the "Am I Infected" Forum.

As said, you are entitled to feel that way, the volunteers do try to give as much safer sex info in one go where possible. People who feel they can contribute including LTS are also welcome to put their names forward as volunteers.

Whilst we all have compassion, also consider many PLHIV have expressed wanting to maintain a safe place focused on living with HIV where they can post without being confronted or trolled by "Am I Posters", this includes myself, I admit. If you feel differently that's fine, but respect that others might not share that view.

In addition, and this is my own opinion, I would hate to see this place overrun by posters concerned about drinking from shared cups etc, whilst loosing focus on those with real risks truly needing a bit of reassurance. If people need to post more then 3 times about using condoms and testing then they really should be talking to a healthcare provider and not asking online.

Quote
Maybe someone with a question about being infected might benefit from both my experience and the experience of many other long term PLWHIV.

People who feel they can contribute including LTS are also welcome to put their names forward as volunteers.

Best, Jim

Purely personal note:

Quote
Jim, yes, you feel uncomfortable reading this.

You obviously have an issue with POZ, that's fine and you have taken it up with them. I am not sure why you feel the need to continue to attack me and make it personal, the structure of POZ.com has nothing to do with me.

But sure ill bite, does this all somehow make you feel better to pick on someone within the HIV community? Such a big lad, I'm not impressed ...

You also seem to think you are the only one who has suffered grief, seen loss or watched people die, in my opinion, that's delusional thinking. I feel genuinely sorry for you, not uncomfortable.
« Last Edit: April 13, 2020, 03:20:37 pm by Jim Allen »
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Offline leatherman

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Re: Paying it Forward - As a Way of Living with HIV
« Reply #4 on: April 13, 2020, 03:32:31 pm »
Quote
this forum discriminates against the members of OUR community that are the most scared an vulnerable
just who do you think "our community" is? People who aren't HIV positive are not part of the community of HIV+ people

personally I think the AII? forum is a waste of time. There's only two things to tell people who "think" they might be infected:

1. safer sex methods are using condoms or having sex with someone who has an undetectable viral load
2. the ONLY way to know is to get tested. Asking questions here is not testing. Situations and/or symptoms are not diagnosable online by laymen or by medical professional. To be honest, asking the poz forums if you are infected is a waste of everyone's time. The only answer is to go get tested.

Quote
Maybe someone with a question about being infected might benefit from both my experience and the experience of many other long term PLWHIV.
As someone who has lived with HIV since 1984 there's no experience or advice you or I could give someone asking if they are infected except to go get tested. What kind of sex they had, what symptoms they think they might have, how "sure" they are they were infected - none of that matters because none of that is fact. the only thing that matters is what a rapid test says. Too often posters in the AII forum are nothing more than the "worried well". Read through some posts. Guilt about sex and non-factual transmission routes abound. The 3-question limit and fee were set up to stop people from endless discussions about situations where HIV couldn't be transmitted.

Quote
I've held the hand of men who died of HIV, I've been to work on a Monday with co-workers who seemed fine aad were dead by the end of the week, I've attended more memorials for people who died of HIV while the president of the United States had failed to use the word in public, I've see the Silence=Death activists shut down rush hour traffic on the Golden Gate Bridge out of desperation to get someone (anyone) to pay attention, I've remember the "die ins" in front of the FDA where people had their bodies outlined in chalk and left as a reminder that OUR COMMUNITY WAS BEING KILLED OFF BY INDIFFERENCE AND AN UNWILLINGNESS FOR THOSE IN POWER TO ENGAGE.
and that's 30+ years old history. When I was infected there wasn't a test (or even a test for cd4 counts!!). Now there's a test and that's all a person who thinks they are infected needs to be told.

Quote
If the POZ forum is supposed to be a safe place only for LT PLWHIV, then please put that at the top of the page.
the history of these forums started as aidsmeds.com just after the advent of ARVs as a forum for PLWH. Back in those days, HIV+ people came here to share experiences and knowledge as often that was about the only way to stay informed .... and to stay alive. I often knew more about HIV treatments than my doctors because of this site. Today, this site is still a site for PLWH. Personally I wish smart&strong would get rid of the AII? forum and simply put up a fact page discussing U=U, symptoms mean nothing, and go get tested.

Quote
AIDSmeds.com
In 1999, Staley founded AIDSmeds.com, a site "dedicated to providing people living with HIV the necessary information they need to make empowered treatment decisions."[41][42] It expanded to include topics including gay health, and education and resources related to gay health.[43] In 2006, AIDSmeds.com merged with POZ, a publication for people living with and affected by HIV/AIDS.[44]
https://en.wikipedia.org/wiki/Peter_Staley#AIDSmeds.com

as far as "Long term survivors", eventually a separate area (a safer space) was started just for pre-haart long term survivors because the problems and experiences of those people (myself included) is very different from the experiences of people more recently diagnosed. for example people diagnosed now are most often prescribed a pill a day and will never understand the trouble (and horrors) of 4 AZT pills every 4 hours, 24 hours a day, 7 days a week; nor will they have the side effects of kaletra or norvir or dozens of other meds no longer used.

While I certainly understand your feeling of needing to advocate for HIV negative people, as someone who has worked in several clinics and been a part of several Ryan white programs, the only advice to those who haven't tested positive is to be tested and to engage in safer sex. there really isn't anything else to tell the AII? folks
leatherman (aka mIkIE)

Offline Jim Allen

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Re: Paying it Forward - As a Way of Living with HIV
« Reply #5 on: April 17, 2020, 04:29:31 pm »
Okay so I left this open, it's been read by the regular posters, there was a reaction a few days ago, so now I am locking it.

Mode note:
@OP

You ignored the previous warning issued and the moderators by opening a new thread harassing and questioning the moderator and the team's decision. Your actions resulted in a 7-day ban from the forum.

You are 100% welcome to return to the forum after the ban, however, any continued flame-bating, ignoring the mods and starting threads questioning their decisions will not be tolerated.

Additionally, a TO for 7 days after ignoring the warnings and given the multiple offences was the light-touch approach. I want to remind you that all forums members must post information which is true and correct to their knowledge and if you post a thread or a post a comment again with multiple offences it will add up fast to a permanent ban, particularly if you start lying again.

You have been warned!

https://forums.poz.com/index.php?topic=277.0
« Last Edit: April 18, 2020, 01:06:07 am by Jim Allen »
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Offline HIVSince1995

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Re: Paying it Forward - As a Way of Living with HIV
« Reply #6 on: April 01, 2021, 01:54:03 pm »

When I was afraid I might be HIV positive, I was grateful for publications such as "Project Inform".  Then, when I test positive and had it confirmed with a second test, there was plenty of help available to me. 

I've considered it my responsibility to pay it forward for all the help I received from non-profit and not-for-profit organizations.  Back in the mid to late 90s.  I do help on various sites and via other organizations where I find people looking for help.

Unfortunately, the non-profit and not-for-profit organizations have almost all ceased to exist.  This leaves information published directly by big pharma that is placed in doctor's exam rooms, big pharma websites, and the one major source of information online POZ.com

Even a glance through the print edition of POZ shows three things.  First, that virtually the only advertisers are pharmaceutical companies that make HIV medication.   Second, that POZ is at least 35 to 45 percent advertisement.  Third, that POZ will almost always write an article on a topic that has a major advertising push - especially for a new drug. 

For example, the September 2020 print issue of POZ has a full-page article on Lipodystrophy on page 17.  The article mentions Egrifta SV™ as one treatment option.  Although Lipodystrophy is a very old and well-known problem for PLWHIV, Egrifita SV™ is a new treatment.  It is no coincidence that the back page of that issue contains a full-page advertisement for Egrifita SV™.  As a note, the back page of any publication is normally the most expensive.

So, why would this stop me, or anyone, from paying it forward on the POZ.com forum.  Because the forum has draconian policies regarding any person who is worried about being HIV positive.

First, the "Do I Have HIV?" forum is limited to three total posts - that is three posts in total for the entire time a person is a member of the forum.  Anyone on here who is a long-term survivor who might have enormous experience to offer is maxed out at three answers.  If a new member does not understand or has further follow-up questions that didn't get answered in three posts total, they can not post further.

Making the policy even more damaging to the most vulnerable members of the HIV community (even if they eventually test negative), is a further clamping down on new member posts.  If the new member, often scared out of their minds with worry, takes their question to another forum such as "Living With HIV". their post will be deleted.  If you doubt this, read the posting guidelines.

Lastly, there is hope for the new member who might even be at risk of suicide or worse opting out of health care altogether after receiving such a rude and insensitive response from the number one HIV publication in the United States.   OKAY, it isn't much hope, but it's something.

For $9.99 a month, every month, they can post as many questions in the "Do I Have HIV" forum as they wish.  However, since most long-term PLWHIV will have maxed out on their three post limit, the only person who can answer them is the moderator.   Between us, how many years of HIV experience, strength, and hope will be unavailable to a new member because of this policy - a policy that not only fails to do good but, has an obvious potential to cause grave harm to new members?

I'm posting this in the "Living with HIV" forum because helping others and answering questions of new people is a way I Live with HIV.  Living with HIV is not all about taking pills on time every day - it is about feeling useful and knowing I am making a difference.
Diagnosed - May 1995 / Lowest T-Cells 170 - Nov 1995 / Highest Viral Load - Over 5 million - Nov 1995 / Started on HIV Meds - January 1996 / Various "cocktails" changed to mitigate side effects which included diarrhea, nightmares, bloating, lipodystrophy and neuropathy / Meds changed several to make them easier to take.  Examples: fewer pills per day, coordinating pills that need to be taken with or without food. Current Meds: Descovy, Tivicay / Viral Level <20
T Cells 350

Offline Jim Allen

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Re: Paying it Forward - As a Way of Living with HIV
« Reply #7 on: April 01, 2021, 02:29:40 pm »
Your complaints raised here, by email and the several mods reports on other peoples threads with the same complaints in regards to how POZ.com is funded, your big pharma claims and gripes that living with HIV section is only for people living with HIV etc were passed on already.

You were also warned about flame bating etc. Now if you have issues with POZ.com publications and their funding take it up with POZ.com, not here with the members/volunteers.

Banned for now pending a review with the other mods.

« Last Edit: April 01, 2021, 03:21:07 pm by Jim Allen »
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