Zephyr Foundation LAUNCHES Interactive HIV Controller FORUM!

[zephyr]

To the AM Family ~

Several years ago I joined Aidsmeds in the hope of connecting with other HIV-positive people who had been infected for a long time without any symptoms and who had never needed to take medications. I spent 13 years wondering if there were other people like me out there in the world, and my first posts on these forums were an appeal to ‘meet’ people in this seemingly bizarre situation. Since I had yet to go public with my HIV+ status, I registered under the alias of ‘zephyr’, (a name I used back in the ‘70’s when I was a free-lance artist in Minneapolis that referred to my roots as a native of Los Angeles - a ‘wind from the West’).

About a year ago, I announced the launch of the Zephyr Foundation website (www.zephyrfoundation.org) on the AM forums to provide people with information on the HIV Controller community at large. I’m back today to announce the launch of a new interactive forum for members of this community who are known as ‘long-term non-progressors (LTNPs), slow-progressors (SLPs), elite and viremic controllers of HIV infection.

We are very excited to offer members of this unique community an opportunity to share their stories with one another and perhaps reveal some interesting clues on our ‘spontaneous’ control of infection.  Personally, I believe these ‘mechanisms of control’ just may extend beyond the biomedical reasons only now being revealed by clinical studies. I’ve always wanted the chance to converse with my ‘kindred cousins’ in a larger sense about other factors that may play a part in our circumstance, and have created a way to do just that.

I invite anyone who has been deemed a member of the HIV Controller group by their physician, or case manager, a scientist or researcher, enrolled in a study or not, and/or anyone who suspects that they meet the criteria of any of these categories (please click on the ‘Glossary’ tab at the top of the homepage for the Zephyr Foundation website for more information) to please contact me at lwillenberg@zephyrfoundation.org for information on how to register as a member of the Zephyr forum for HIV Controllers. (The registration process is pass phrase sensitive.)

I want to thank Peter, Tim and Ann for their gracious ‘thumbs-up’ for this announcement today, and many thanks to everyone who has offered kind words of support in my quest to create the Zephyr Foundation since its humble beginning here on AidsMeds in 2006.

My very best to everyone!

Zephyr

[madbrain]

Hi zephyr,

I am another HIV controller, enrolled in a study.
I think having a forum for us is good. However, please don't make the enrollment process too difficult. Otherwise I am not sure how many members you will get. If we can't sign up from the web site, then I think that is too difficult.

To the AM Family ~

Several years ago I joined Aidsmeds in the hope of connecting with other HIV-positive people who had been infected for a long time without any symptoms and who had never needed to take medications. I spent 13 years wondering if there were other people like me out there in the world, and my first posts on these forums were an appeal to ‘meet’ people in this seemingly bizarre situation. Since I had yet to go public with my HIV+ status, I registered under the alias of ‘zephyr’, (a name I used back in the ‘70’s when I was a free-lance artist in Minneapolis that referred to my roots as a native of Los Angeles - a ‘wind from the West’).

About a year ago, I announced the launch of the Zephyr Foundation website (www.zephyrfoundation.org) on the AM forums to provide people with information on the HIV Controller community at large. I’m back today to announce the launch of a new interactive forum for members of this community who are known as ‘long-term non-progressors (LTNPs), slow-progressors (SLPs), elite and viremic controllers of HIV infection.

We are very excited to offer members of this unique community an opportunity to share their stories with one another and perhaps reveal some interesting clues on our ‘spontaneous’ control of infection.  Personally, I believe these ‘mechanisms of control’ just may extend beyond the biomedical reasons only now being revealed by clinical studies. I’ve always wanted the chance to converse with my ‘kindred cousins’ in a larger sense about other factors that may play a part in our circumstance, and have created a way to do just that.

I invite anyone who has been deemed a member of the HIV Controller group by their physician, or case manager, a scientist or researcher, enrolled in a study or not, and/or anyone who suspects that they meet the criteria of any of these categories (please click on the ‘Glossary’ tab at the top of the homepage for the Zephyr Foundation website for more information) to please contact me at lwillenberg@zephyrfoundation.org for information on how to register as a member of the Zephyr forum for HIV Controllers. (The registration process is pass phrase sensitive.)

I want to thank Peter, Tim and Ann for their gracious ‘thumbs-up’ for this announcement today, and many thanks to everyone who has offered kind words of support in my quest to create the Zephyr Foundation since its humble beginning here on AidsMeds in 2006.

My very best to everyone!

Zephyr

[OzPaul]

Hi Loreen

I went to the Zephyr Foundation web bite and tried to enroll  but it said enrollment was full, thought you would want to know.

Cheers,

Paul

[zephyr]

Hello, madbrain -

Thank you for your contributions to the studies! It's good to know you are out there, and I appreciate your chiming in on my thread.

The topic of registration for the ZF Forums was one the Board of Directors and I spoke about at length. One of the main concerns about a secure registration process has to do with protecting the identity of the 'controller' choosing to become a member. As you know, not all of us within the community are public about our HIV-positive status, and endeavoring to respect one's right to privacy is of utmost concern.

This is why I invite folks to write to me directly  via my email account at Zephyr: lwillenberg@zephyrfoundation.org, in order to receive a pass phrase to commence with the process of registration.

We don't mean to make the process difficult for anyone, but be assured that we spent a great deal of time figuring out the best way to proceed. I'm sure you will understand.

I look forward to hearing more from you, and thanks again for posting a comment!

My best,
Zephyr

[zephyr]

Hello Paul,

I appreciate your post, thanks so much.

If you refer to my reply, above, to madbrain's comments, you will understand a bit more of our registration process.

When an individual attempts to register for membership to the ZF Forum, they will see a small icon, "i", to the right of the text box they are trying to fill in. This indicates that information is available about that particular 'box'. Also, we have posted clear language that indicates an individual must have the pass phrase in order to complete the registration process.

Our sitemaster informs me that we don't have any record of an error message as you describe (that 'membership is full at this time').  The note does make a reference to 'new members' who were helping to trouble-shoot the forum prior to our launch, and applies to them.  As you read further, we have posted the actual start date of our forum for HIV Controllers for June 1, 2009. (Modified to expand upon my explanation.)

Zeph

[bobino]

Hi Zeph,

Just wanted to add my two cents about the new forum.  As you know, I've already signed up, and I'm looking forward to participating in the discussions.  I think it's wonderful that there's a forum devoted specifically to HIV controllers and to related research.  Will do my best to spread the word about it.

Thanks for all your hard work in setting it up for the rest of us.  And thanks as always for your advocacy and your devotion to HIV research.

John

[bobino]

Hi zephyr,

I am another HIV controller, enrolled in a study.
I think having a forum for us is good.

Hey Madbrain,

Wanted to encourage you to join the Zephyr Foundation forum.  From your numbers, it looks like you're a viremic controller, as am I.  I'm hoping that you and other VCs will take part in the discussions and share your experiences with us.  A lot is written about elite controllers like Zeph (for obvious reasons), but there's not so much out there about folks like us.  I'd like to generate a bit more discussion about those of us in this rather unusual club.  

I know Zeph will help you resolve any technical problems you may encounter in trying to join.  So please join us in the forum.  We'd love to see you there.

John

[Ann]

I think having a forum for us is good. However, please don't make the enrollment process too difficult. Otherwise I am not sure how many members you will get. If we can't sign up from the web site, then I think that is too difficult.

I think it's a great idea to have the registration process pass-phrase protected. That way, their forum moderators don't have to spend loads of time filtering out people (or spam-bots) who only want to spam the forum. You have no idea how much time we spend here at AM filtering spamites out and stopping them from even registering. And you've got to admit, this has got to be one of the most spam-free forums on the internet - (and I take personal pride in that ) - but it IS very time-consuming to keep it that way.  The ZF forums will also be able to keep the Worried Wells out, as well as denialists. We wouldn't be able to run our registration process with a pass-phrase protect, but their forum serves a different purpose to this one.

Good luck with this venture, Zeph!

Ann

[water duck]

Dear Loreen,

What a joy to hear you !!

Congratulation on your founding of Zephyr Foundation !! May it's 'wind' blow far and wide !!

Wd

[Trish]

Ann, first off... you are the best moderator I've seen on the internet!!    Second, you are spot on with our registration process.  We (the Board of ZF) spoke at length on the subject of how best to protect the site & its members, but yet not make it so tedious to register.  We wanted to protect ourselves from spam, denialists and others who may just want to cause trouble to this community.  Both Zeph & I have seen it happen and we just wanted to protect our members and their confidentiality, which is one of our main concerns. 

Also, because of the differences in progression of LTNP's (HIV controllers & viremic) versus those of us who have progressed, the conversations are a bit different.  Some of us are on meds, deal with side effects and illness.  We just have different issues.  The LTNP's do not have the same issues in common with the majority of us living with HIV/AIDS.  We simply wanted to protect this community.  I hope others can understand this reasoning, and I certainly hope that all of us can be on the same page when it comes to the research of LTNP's.  It's very possible that they may hold a key to a preventative vaccine or maybe even a cure. Wouldn't that be something to cheer about?  I'm grateful for these people who are in the studies and giving up their blood, plasma, tissues, etc.  If they hold the key, I'm behind them 200%.  It gives me hope and I find it all very exciting to witness.

If any of you believe you are an LTNP (HIV controller or viremic controller) or a slow progressor, please check us out.  If you like what you see on the site, we hope you will register to be a member of the forums. Just be sure to email Zeph to get the "pass phrase."  We don't mean to make it difficult to register, we just want to ensure that the site is safe and the forum members are protected.

Thank you Peter, Tim and Ann for your cooperation.  Wishing you all the best.  Also, thanks for being instrumental in getting me to where I am at now.  AIDSmeds has really helped me over the past 4 years. I'm truly grateful. 

All the best to all of you on AIDSmeds!!

Trish 

[madbrain]

Hi,

Hello, madbrain -

Thank you for your contributions to the studies! It's good to know you are out there, and I appreciate your chiming in on my thread.

You are welcome.

The topic of registration for the ZF Forums was one the Board of Directors and I spoke about at length. One of the main concerns about a secure registration process has to do with protecting the identity of the 'controller' choosing to become a member. As you know, not all of us within the community are public about our HIV-positive status, and endeavoring to respect one's right to privacy is of utmost concern.

Indeed, privacy can be an issue. While I am also very publicly out out as HIV positive (I was in newspapers and on TV last year - though I did not mention I was a controller then), I wonder a little bit if your registration form really requires members' personal information such as real name and address. The forums here do not require that. Many others probably don't want that info to fall into the wrong hands. I don't know how you have secured your servers exactly. But as a software engineer working on matters of security, I can tell you that data compromises can and do happen. Just watch all the compromises at all the banks. Unless there is a good reason for the personal information to be absolutely required, why not make those fields in the registration form optional ?

Julien

[madbrain]

Our sitemaster informs me that we don't have any record of an error message as you describe (that 'membership is full at this time').

Perhaps he was talking about the page at :
http://www.zephyrfoundation.org/index.php?option=com_comprofiler&task=registers

The first sentence is

PLEASE NOTE: Registration is currently CLOSED for new users.

That would discourage a lot of people, I think.

Yes, I know the second sentence says :

It will be available for HIV Controllers on June 1, 2009.

But I think many people will stop at the first one

Since the date has passed, perhaps those 2 statements needs to be deleted now.

[madbrain]

Hey Madbrain,

Wanted to encourage you to join the Zephyr Foundation forum.  From your numbers, it looks like you're a viremic controller, as am I.  I'm hoping that you and other VCs will take part in the discussions and share your experiences with us.  A lot is written about elite controllers like Zeph (for obvious reasons), but there's not so much out there about folks like us.  I'd like to generate a bit more discussion about those of us in this rather unusual club. 

I know Zeph will help you resolve any technical problems you may encounter in trying to join.  So please join us in the forum.  We'd love to see you there.

Yes, currently I am enrolled in the studies as a VC. I am wondering if the VCs and ECs are really such disjoint groups, or just the same people in different stages. I have heard that some people had some low but detectable viral loads for a few years after their HIV diagnosis, then they became naturally undetectable later on.

Also, VL testing was not always available. I'm not sure the exact date when it became available, but what it means is that we don't know the VL for many LTNPs during the early years of their infection. Some of them may now be labeled as ECs, but perhaps they had a detectable VL before - we just didn't have the tests.

And of course, most people didn't know exactly when they became HIV positive. That also leaves some time period when people didn't get their VL checked - even if the tests were available. That's not the case for me - I know within a few months when it happened - last neg test in june 2006, poz in late oct 2006 - and I got a VL test right away. I still hope to become undetectable without meds some day and move on to become an EC .

[OzPaul]

Hey Madbrain

Yes, those were the statements I saw at zephyrfoundation. I was/am a bit perplexed.

In reference to ltnp's and viral load #'s, I tested poz in 1985 and the first time I had a VL test done was in 1992 which came back as undetectable with the assay that was available at that time.

Hi Zephyr

I would like to join the new ZF forums  I wrote to you at the lwillenberg e-mail but haven't hear back. Perhaps you can PM me or write to me at my yahoo account.

The ZF site looks fantastic !

Paul

[emeraldize]

I have heard that some people had some low but detectable viral loads for a few years after their HIV diagnosis, then they became naturally undetectable later on.

Madbrain -- I've not ever read this as possible to occur. Like you, I knew very early on. It would be nice to have decreasing-to-undtectable VL although mine just hit its lowest ever at 1,700--it's never been higher than 2,000. What I'd like better is a rising CD4.

[madbrain]

I have heard that some people had some low but detectable viral loads for a few years after their HIV diagnosis, then they became naturally undetectable later on.

Madbrain -- I've not ever read this as possible to occur. Like you, I knew very early on. It would be nice to have decreasing-to-undtectable VL although mine just hit its lowest ever at 1,700--it's never been higher than 2,000. What I'd like better is a rising CD4.

I got this second hand - from someone who was dating a controller in that situation - having a detectable VL, going to undetectable later. Unfortunately my friend seems to have disappeared so I can't check directly. But I was told he was enrolled in studies too.

My latest VL has been my lowest one ever at 501, also. I think the sensitivity of earlier VL assays wasn't very high. It was perhaps 400 or 500 copies. I'd like to think I would have been undetectable on the old assays
I did have a VL over over 2000 a few times though, but never 3000. It has tended to decline over time.

My absolute CD4 have bounced around quite a bit, in the 550 to 800 range, for no discernable reason. And the CD4 percentage from 27 to 40 - quite a range. Though my percentage seems to be more stable around 30 to 35 lately.

[Ann]

Hi Zephyr

I would like to join the new ZF forums  I wrote to you at the lwillenberg e-mail but haven't hear back. Perhaps you can PM me or write to me at my yahoo account.

I think Zephyr is in Boston for a few days - that's probably what the delay is about.

Ann

[Trish]

You are correct Ann... Zeph is in Boston, returning on Friday. She will only have a small window to check emails before going to work Friday night.

Madbrain... I will discuss this issue with our site master. Thanks for the feedback! Much appreciated.

[OzPaul]

Thanks Ann and Trish.

Paul

[zephyr]

Hi folks -

I'm back from Boston and delighted by the many comments to this thread - thanks so very much!

As you may imagine, I've been resting up following my donation of several billion white blood cells to the HIV Controller study, a cross-country and long travel day on Friday, and going to my (paying) job all weekend ( a solid 48 hour shift that requires me to sleep at my disabled client's home).

I have to run some errands today that will take me away from my computer for a bit, but I will be back to address the many thoughts posted by all of you very soon.

Thanks for your patience!

-Z

[zephyr]

Hi All,

John (bobino):  I really appreciate your support both by registering as a member of the Zephyr Foundation Forum and your help to circulate the news its launch in your home town. People need to know that the goal set by Dr. Walker’s team to recruit 1,000 elite controllers remains at 50%, so the search for more participants must continue. As for setting up the forum, the kudos really need to go to our talented webmaster, Jeff, and our two other Board members, Trish & Liz. It’s an amazing process to watch and learn about, and I can certainly appreciate what Peter, Tim and their team have done with AidsMeds over the years!

My advocacy efforts are inspired by people like you, my friend. I am so glad we finally got to meet in person recently following three years of private messages via AM!

Ann:  Thanks so much for helping to shed light on what it takes to operate a website or forum from the ‘back end’ of things. You are so very right about spam-bots – I just deleted over a dozen from my e-box today!  Your good wishes mean a lot to me, and my team – you are a doll!

Waterduck:  I am SO happy to hear from you!     Folks might not know that it was you who inspired me (and coined the name for) the Zephyr Foundation, way back in 2006. (Did you know we have accredited you for this on the Zephyr website??) You occupy a very special place in my heart, dear brother. I hope you are very well!

Trishie:  My dear friend, you have been there from the beginning for me as I planted the first seeds in my mind about an organization for HIV Controllers. None of this could have happened without your constant support and belief in me. You have hit the nail on the head with your comments to this thread, as only you can do. Thanks so much, Honey! 

Julien (madbrain):  I can assure you that our webmaster has my full confidence insofar as securities are concerned for our website and our forum. I recognize that the hackers are getting smarter with each passing day, sure, and it calls for concentrated effort. I appreciate your concern and will pass them by our sitemaster. He will also be deleting the confusing language from our registration page that has caused anyone a problem.

Paul: Thank you for the compliment on our website.

Sorry for the delay in my response to everyone. I basically remain a one woman show with my advocacy efforts and try to be timely with all of my correspondence amidst a very busy schedule and a full time job. I appreciate your comments very much!

My best to you,

Zeph

[bobino]

I got this second hand - from someone who was dating a controller in that situation - having a detectable VL, going to undetectable later. Unfortunately my friend seems to have disappeared so I can't check directly. But I was told he was enrolled in studies too.

Well, my own personal experience was that my VL was detectable (around 3,500 or so) when it was first measured after my diagnosis.  After that it declined and rapidly became undetectable.  Unfortunately, it didn't stay that way, so after a few years my hopes of being one of the elite controllers like Zeph evaporated.  I haven't heard of anyone starting out detectable and then becoming a "durable" elite controller.  The only elite controllers I'm aware of are folks like Zeph who have always had undetectable VLs.  But who knows?  Perhaps such people exist.

You could post this question in the ZF forum and see what folks say.  Without wishing to steal Zeph's thunder, I understand that the forum may see the occasional visit from an expert in the field.

John

[water duck]

YES 2006, Sis dearest, was a year where some very good things happened around here and where people got connected !! Hopefully it will happen again.

Coining the name was easy compare to the uphill road you needed to trot, especially getting the support and belief.
Anyway, now that your labour of LOVE is bearing fruits, it filled me with a joy and pride , words are inadequate.

By the way, The Zephyr Foundation has a numerically value of seven which is a holy number , there is within two master numbers, i will mail you. 

Wd