Questioners not allowed at “HIV Controllers” forum

 Posted by on December 5, 2009 at 8:16 am
Dec 052009

I have probably spent at least ten thousand hours online the last ten years or so and I am still stumbling onto new blogs and websites that deal with HIV and AIDS issues from various perspectives, so I’m pretty familiar with the most common inconsistencies, aka “mysteries”, of the HIV=AIDS hypothesis.  Still, I was taken aback recently when I was told I would not be allowed to participate in, or even monitor a forum for long term survivors like myself, solely because I consider myself an open-minded questioner of the AIDS orthodoxy.

You see,  I recently read a press release at about a new forum for “HIV Controllers”, those people who test positive on the antibody test developed by Robert Gallo, the now discredited one-time “discoverer” of the HI virus, but who do not get sick, or perhaps do not even test for a “viral load”, despite not taking any so-called antiretroviral drugs. The press release was from the Zephyr Foundation, founded by 16-year-survivor Loreen Willenberg.

I wanted to know if I fit the category of a HIV controller. I have never had one of the “AIDS-defining” opportunistic infections, though I do have a detectable viral load that bounces around erratically. I have also technically met the definition of “AIDS” by having had a cd4 count of less than 200, three times in 2002, which was the last year I took antiretroviral drugs (ARVs). Lately that count has been averaging about 400, though like the VL, it is also a moving target.
When I first contacted Willenberg about joining the newly announced forum, I shared this same basic history and background to find out if I met the forum’s definition of a HIV Controller. This was her initial response:

Based upon my five years of study about the HIV Controller/Long-term Non-progressor topic, it would seem that you are part of a group that the researchers are calling “Viremic Controller” – folks who do register a viral load blip now and then – but for all practical purposes, suppress the virus over long periods of time. This term is used by Dr. Bruce Walker’s team in Boston (International HIV Controller Study) and the research team at the National Institutes of Health use ‘Long-Term non-progressor’ (LTNP). It can get confusing at times, wondering exactly what category each of us fit into, but the fact is that your particular group of ‘suppressors’ have become a focal point in many studies.

[skip pitch for clinical research studies]

Please join us in the forum by using this (private) pass phrase: [deleted]. We ask that you do not share it with anyone, as it is the key to our privacy and our ‘safe haven’. You can register by going to the Zephyr website, scroll down to the bottom of the page, and proceed. Any personal information requested by us is not shared with anyone else or any other entity, of that you can be sure. If you could drop me a line via email to let me know you’ve registered, I can approve your application almost immediately.

As a dissident, I’ve more than once read challenges from orthodox defenders to basically “put up or shut up” by volunteering for a study of these “HIV Controllers”. I am intensely curious to know if these researchers are any more capable of thinking outside the box than the rest of the AIDS research community. Do they look at lifestyle patterns? Or are they locked into the same so-called “evidence-based science” that is based on evidence that has been discredited, namely the earliest Gallo papers published in Science?

I think non-progressors, long term survivors… call them what you want… need to be studied.  I wanted to be up front with Zephyr (the alias Ms. Willenberg uses on her forum), so I disclosed my dissident status to her in a followup email:

I do want to ask you something before I join the forum though. I have become involved in what is known as the “dissident” movement (some call us denialists), in that I have a lot of questions about the validity of the HIV=AIDS, unless you take the drugs theory.

I’m mentioning this, because I would not want to have to hide my identity in the forum, and I am now “out” as a dissident. I have zero intention of pushing any particular agenda, so that is not a problem. I simply want to find answers that are consistent and make sense. Why are some of us surviving quite well without ARVs? Could more people with a HIV-positive diagnosis also survive without the drugs? No one offered that option to me, I had to make the difficult decision on my own, and it’s the best thing I ever did.

…Would I still be welcome at the Zephry forum?

The response I got was polite, yet much chillier than the original one I received from Ms. Willenberg:

I’d like to thank you for your honesty – it’s a rare characteristic, and always appreciated in my world.

You have connected with someone who has spent the last 17 years studying the Human Immunodeficiency Virus and in the past five years, devoted herself to the study of the human immune system (innate and adaptive), as well as the science behind the research of the HIV Controller. One of the most important things I have learned in this process is how very complex we human beings are, and how little is truly understood about the workings of our immune systems. Did you know, for example, that the T-cell wasn’t discovered until 1978? We can accredit Dr. Bruce Walker with this finding, and he is the individual spear-heading the International HIV Controller Study in Boston.

I mention this because there are few (as of yet) definitive findings to explain the defense mechanisms of the HIV Controller, and because you have asked why there are not more of our ‘voices’ out there. You must remember that 1) We are hard to find because we are so healthy (and some may not even know they are HIV-positive), and 2) We still live in a world that stigmatizes everyone who is infected with the virus. It is no small feat for someone to step forward to disclose this fact, and I consider it an act of courage from anyone who chooses to do so. Out of the 100 or so HIV Controllers I have corresponded with these past five years, there are only 13 of us who have ever gone public with the press. Evidence of oppressive stigma in my book. Indeed, despite tremendous efforts to locate and recruit additional members of the HC/LTNP community, Dr. Walker and his collaborators have only found 1600 of us in the entire world.

In regard to membership to the Zephyr Foundation Forum, I will speak as the President of the Board and tell you that our Terms of Service do not grant access to individuals who are denialists. While I respect your opinion, I have an obligation to the HC/LTNP community to preserve the safe haven we have created and do not feel that your stance is in the best interest of that community.

All of us agree that there are many mysteries and unanswered questions about HIV and AIDS and Willenberg is no exception.  In fact I find nothing in her response to disagree with…  until her last statement.

How the hell will we ever find answers if we continue to pursue research with blinders based on an old, discredited idea put forward by Robert Gallo nearly three decades ago?  How is it that asking the questions I asked threaten the “safe haven” of the “HIV Controllers”, namely:

  • Why are some of us surviving quite well without ARVs?
  • Could more people with a HIV-positive diagnosis also survive without the drugs?

While Willenberg and her elite controllers are discussing their genetic markers and ever more convoluted explanations for non sequiturs that define AIDS research, the rest of us will have no choice but to continue conducting our own research,  outside the scientific mainstream.

I cannot be the only “HIV Controller” deemed ineligible for the International HIV Controllers Study, because I do not maintain a viral load under 2,000, a ridiculously low number for those who are detectable at all.  No wonder there are so few candidates.

No wonder Willenberg can quote that researchers have only discovered 1600 of us in the world.  They have stacked the deck to ensure they won’t find how many of us there really are.

As seen at the AIDS Education & Training Centers (AETC) website, even the orthodox AIDS theory continues to dictate that cd4 count, not viral load, is the single most important indicator of immune suppression. Indeed, viral load tests can return results that would number in the millions if the protocol didn’t lump them all in the category “>500,000”.  Yet the study mentioned above does not even consider cd4 count as part of the enrollment criteria.

I’d love to know what others who are “controlling” HIV think of these and other questions I have.  Indeed, I’d like to encourage the obviously sincere founder of the Zepher foundation to press researchers to broaden their studies to examine the impact of lifestyle modification and avoidance of drugs on the “progression” of HIV.

Alas, I’ll have to be content to post them here instead.




  4 Responses to “Questioners not allowed at “HIV Controllers” forum”


    You say “How is that asking” but I think you mean “How is it that asking”.

    I admit to being a nitpicker. Don’t feel you need to leave this up, especially if you repair the sentence.



      Thanks for catching that typo, Richard. Will you be my editor? 🙂


        Of course.

        Today I was fighting with getting 404s when I tried to read the rest of this very post. THEN I discovered that you had moved your content to another server. I wish it were clearer that that was the cause. I only discovered it by successively chopping the right hand end of the (now wrong) URL I had in my Google Reader. There ought to be a better way.



          Well, you made back anyway, Dick. That’s the important thing. I was dinking around with stuff most of the morning and saw my share of error messages too.

          Considering how little I know about hosting at my own domain, it is mostly due to luck that the site is up at all! 😉 You may want to re-subscribe to the new feed URL in Google Reader.

          Thanks for your patience.

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