HIV the tough questions

By JOHN FORBES
Interview with CARL STRYGG
INQ MAGAZINE. Aug/Sept. 2001

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"Orthodoxy cushions the impact of new ideas by surrounding them with a wall of paper so thick that the average inquirer can barely make a dent in it." - Harris L. Coulter
Divided Legacy--The Conflict Between Homeopathy and the American Medical Association.

Carl Strygg is a 35-year-old cherub with the gracious ease and manner of a born host. Though underlying his grace I sense a will of malleable but quite unpierceable kevlar. A view that seems to accord well with his Western sign Gemini and his Eastern, Year of the Snake. "He is full of charm and an enigmatic dignity and never gives away his true motives", as Theodora Lau characterizes the combo of Gemini/Snake in her insightful, The Handbook of Chinese Horoscopes. I make these observations about Carl because as a co-founder of HEAL Toronto (Health Education AIDS Liaison) he is usually in the hot seat with the media having to discuss or, more often than not, defend his controversial views concerning the HIV/AIDS theory.

What I've found remarkable regarding Carl and the media is in the way he handles questions. From the ordinary pedestrian ones, to the ones flung at him like verbal Molotov cocktails, Carl handles all with equal doses of clarity, composure, intelligence, compassion. He is not the usual activist, hardwired with inflexible militant agendas and spikey confrontational edges. One really doesn't need to ask Carl any of the usual 'hard questions'. For he's already asked these of himself, as you will discover in this interview.

Over the occasional drone of the juicer at the otherwise tranquil, Sephiroth Health Store, in untrendy Queen St. E., Carl told me his story.

JOHN: You are one of the co-founders of HEAL Toronto. What brought you to HEAL?

CARL: I would have to say largely, Rob Johnson by putting me in touch with the kinds of information and ideas that were present and drawing my attention to them. I had watched Rob struggle with his diagnosis of HIV positive for many years. He'd never been unwell and had done a lot of investigation himself into the questions surrounding AIDS, its causes, the testing for it and it fascinated me to realize that there was a whole...there were facets to this issue that were never discussed. That I never heard about, never read about. So Rob and I undertook, together with Ian Young, to remedy this situation. He was also a co-founder. In fact it was with Ian that I first talked about founding a chapter of HEAL in Toronto. Also, it was after reading Peter Duesberg's book, Inventing the AIDS Virus, and Christine Maggiore's, book, What If Everything You Thought You Knew About AIDS Was Wrong? Within months they appeared in my life and I was energized to act upon what I was learning and try and make it available to people. It seemed to me that here was a huge hole in the information being delivered to people.

Whenever I hear phrases like "AIDS awareness" and "AIDS education" I picture these poor benighted students, sitting in a room, all being told what the world is really like and never actually being told to go outside and look at the world for themselves.

JOHN: One thing I wanted to bring up is that not all members of HEAL are HIV positive--contrary to what the public chooses to believe about the group.

CARL: Absolutely! I'm frequently asked about my own status and the reality of this issue is that it is not an issue that appeals specifically to HIV positive people. It's an issue that appeals to anybody who believes in freedom of speech and access to information. Many members of the HEAL Toronto collective are not diagnosed HIV positive or don't know their diagnosis or what their status is--as are many people world-wide who are working to bring to bring this information to light, so that it can be discussed openly and without censorship.

JOHN: Anything else?

CARL: Yes, to summarize: no one should have to struggle with any medical diagnosis without full disclosure about the limits to the knowledge around that diagnosis. With full, easy, uncensored, uninhibited, access to alternative views on what that diagnosis might mean. An honest admission to the limits of that theory. But we are told that HIV is THE cause of AIDS, as if nothing else could cause immune deficiency. Well, immune deficiency certainly preceded HIV, so there are certainly many, many kinds of immune deficiency. This has all been forgotten somehow--it's as though when you have an immune deficiency, and you are HIV positive: its AIDS. I don't see how that limited, tunnel-vision, approach to the AIDS problem helps patients. When you limit discussion and you limit points of view, you limit patient options and ultimately you disempower patients. It should be a given that being a patient is an empowering experience, and doctors should do everything that they can to help patients to be empowered patients. I don't see that in Western Medicine anywhere. I certainly don't see it in the HIV/AIDS equation. And so this makes the work that I'm doing through HEAL very, very important.

JOHN: How is the group set-up and run?

CARL: We have chosen to avoid any corporate structures. There is no president, no board of directors, at this time. We have meetings where we get together and talk as equals about what we would like to see happen. We figure out what talents and what time we have available as a group to make these things happen. Sometimes this happens slowly, sometimes very quickly. I had a fellow phone up the other day who said, "I think your work is very important and how do I become a member?" I said that if you were willing to contribute ideas and support to our work, and you identify personally as a member of HEAL, then you are a member. There's no money to pay. You don't have to sign a form. There's nothing that you can't say, can't do. When we are acting under the umbrella of the collective its important to consult with the rest of the collective to see if that fits with what we want to do at that time. But there is no process in becoming a member of HEAL.

JOHN: Does HEAL have a mission statement. (Something counter to the vicious and distorting, pigeon-holing that tries to dismiss HEAL as "just a bunch of AIDS deniers".)

CARL: I've always been interested in that phrase 'AIDS deniers' because its modeled on the idea of 'Holocaust deniers'; I've always felt that there was something really ugly about comparing a group of people who ask questions about the way Western medicine and Western scientific research is operated, to people who question whether or not the Holocaust was real. And I don't see that there's a comparison. One is an invitation to open discussion and empowerment for all and the other would minimize the suffering of a persecuted minority--and minimize its discussion too. I see it as a clear attempt to further marginalize a group of people who are already marginalized by their views, some by their diagnosis, some by their sexuality, and this is about disempowerment and control. All it does is reinforce a very ingrained, deeply-rooted status quo, which we would challenge.

We do have a mission statement that can be accessed at the HEAL web site: www.healtoronto.com

JOHN: Has the virus ever been identified?

CARL: This is the kind of question that thrills me because there is no agreement even within that group of people who are re-appraising AIDS and its causes. There are those within the AIDS re-appraisal movement who would say that it has not been isolated according to rigorous standards that were set forth in the 1970's at the Pasteur Institute for retroviral isolation. And there are those within the dissident movement who would say that it has been adequately identified, or isolated, according to fairly rigorous standards. This does boil down to a very interesting, and I think vital, scientific question. That is: what qualifies isolation?

I'm of the opinion that HIV has not been isolated in the way that almost all other infectious microbes have been. Certainly the HIV test has not been calibrated against HIV itself; it doesn't use proof of infection as a gold standard. In other words, when they were calibrating the HIV test, they didn't take people who were known to be infected by using viral isolation to find the virus and compare this to people to people known not to be infected by using viral isolation. So this leaves HIV antibodies wide open to interpretation: what exactly are they? It's widely known that antibodies are not specific. There are no antibodies that are specific. The immune system is very clever and it reuses things. It doesn't make new antibodies each and every single time an infection comes in. It takes what's at hand and adapts them a little bit and so many antibodies cross-react. Without using viral isolation as a gold standard you can't say for certain that any antibody test is specific only to people who are infected. So I don't think HIV has been isolated. I think many things associated with what is believed to be HIV have been identified, but whether or not those things in fact originate with a specific virus is entirely an open question--and would be cause for enormous strides forward in science if it were ever properly examined. But the AIDS establishment seems terrified to examine the possibility that we have a non-specific antibody test in wide circulation. In my view it is a wildly non-specific antibody test. There are many, many cross-reactions to the HIV test. Over 70, currently.

JOHN: The test for HIV varies from country to country, I've learnt. Can you explain these anomalies; who tests for what and where?

CARL: Well different governmental bodies have different criteria for which antibodies they consider to be a clear indication of infection with HIV. There's a general agreement that there are maybe 8 or so antibodies associated with HIV, but only certain combinations of those antibodies are considered to indicate infection specifically with HIV, as opposed to non-specifically with a bunch of other things. For some reason there is no world standard on what HIV antibodies really are. This is a source of very important questioning. Now why would an antibody test not have a worldwide standard especially when you're testing for a virus with the claimed devastating potential as HIV? I would think that rather than it being less important in having a world-wide standard, that it would be vitally important in having a world -wide standard. So that we would know that we were talking about the same infection rather than maybe, say, antibodies A B and C, in one country. And antibodies A B and D, in another country; and antibodies A B C and F in yet another country. The United States, as I understand it today, has about 5 standards in use currently throughout the country.

JOHN: That's a comfort.

CARL: Well, it tells you that nobody can agree on which antibodies actually mean you're infected. It tells you that the antibody test has not been properly calibrated or there would be no question as to which antibodies meant you were actually infected.

JOHN How do they, doctors and journalists, react to you or your work? Comments generally.

CARL: After people get over being incredulous--journalist are pretty good. They're used to dealing with unusual, novel ideas and approaches. It's part of what journalists like to report, new interesting ideas and events, happenings. So journalists are pretty good. They have less invested in a specific paradigm. There's still a big resistance to accepting the possibility, or entertaining the possibility that the medical establishment didn't get this right--right from the get go. That's really tough for people. I really don't know why. As a journalist I would think it would be quite easy to accept that the medical establishment, being run by people, was subject to the same foibles that every human endeavour has ever been subject to: shortcomings and flaws.

I'm frequently asked the question by journalists:" How could this many people be wrong?" And interestingly when you look historically at how science works, the question should really be:" How can this many people be right?" Whenever you're dealing with a new and widely accepted scientific paradigm, historically, it's almost invariably wrong. It always invariably turns out that a popular idea, that arose quickly, is fundamentally flawed. I'm always interested to hear that people think that truth is somehow democratic. That it's something you vote in and when there's a majority of people, and well, somehow that means that it's more likely to be right. Any activist knows that group-think is a major problem and is almost always wrong-headed.

JOHN: The homeopathic historian, Harris Coulter, in his epic, Divided Legacy, records that the AMA was primarily created to oppose the homeopaths, who, in the 1800's, had formed the very first medical association in the US. In one memorable encounter with an allopath (a conventional MD) it is disclosed that the AMA never really went after the homeopaths on matters medical, but because frankly, "the homeopaths went in there and got the business." This battle went on right through the 19th and 20th centuries.

CARL: My view is that doctors are as much victims of censorship as anyone else dealing with HIV science is. They have less time than the average patient to investigate alternative theories. They're trying to deal with their case loads and keep up with the latest developments in conventional medical science.

JOHN: The stuff that's thrown at them these days.

CARL: Can you imagine! All these drug-detail men coming in with their little packages of free things saying this is great for this and that's great for those and have these free. It must drive them mad. I'd want to just kick them out of the office. I keep hoping doctors will say: just send me something in the mail--I've got patients to deal with. But don't try and sell me things cause I'm not here to sell my patients anything.

But this is the way Western Medicine is designed. It's very authority based, very patriarchal. It's about power and control. Doctors are taught to be very obedient and to expect their patients to be very obedient. So it doesn't surprise me ever when doctors become defensive or even hostile.

JOHN: Do you know of anyone who is currently using alternative medicine and is a member of HEAL? Can you give me a sort-of patient X profile of them?

CARL: Yes. Because the current HIV treatments have been so unsuccessful, especially in dealing with people who are otherwise healthy. Many people who view their HIV diagnosis as a health challenge--and I say that because there are many HIV positive people who don't view their diagnosis as a health challenge. But there are those that do. Although we support every individuals right to choose an appropriate treatment modality, whether that be HIV drugs or Ayurveda or a combination of homeopathy and TCM (Traditional Chinese Medicine), or fasting, or whatever. Whatever the approach, it deserves to be treated lovingly and without judgment. There is, I think, a misconception about HEAL and that is that we are anti-Western medicine or anti-HIV drugs. We question the efficacy of the treatments and we certainly question the wisdom of presuming that all HIV positive people will become AIDS patients and should take these drugs just because their blood fits a certain mathematical equation. Or, as many HIV positive people have found, they're just encouraged to take these treatments regardless...I've always looked at HIV treatments as a kind of the immune system equivalent of using mastectomies as a preventative for breast cancer-it accomplishes it's goal-but at what cost?

We believe that the only person who is qualified to make a treatment decision is a patient. No doctor is qualified to make a treatment decision, because they don't have to take the treatment. They're not the ones whose kidneys are failing, or experiencing side effects ranging from skin rashes to spontaneous death. These treatments are an option, but they are not an obligation. And HIV positive people are made to believe that because they're infected with something that somehow these treatments are not only inevitable but they are an obligation. That's the message I get and that's the message that people within HEAL get.

JOHN: To get back to patient X. What is he doing?

CARL: Well from what I understand he's a person within HEAL who didn't view his HIV status as a health crisis. but viewed it more as an opportunity to look at his life. In the process he decided that HIV treatments, because they were so narrow, were entirely inappropriate and he was going to look at some treatments dealing with some long-standing, chronic health issues. Because these had proceeded by many years the diagnosis and they were just some long-standing problems. He was fortunate enough to find...

JOHN: Can I interrupt here in order to ask you one question that you may or may not know the answer to: had his symptoms worsened after his diagnosis?

CARL: Well, the one thing that had been observed was the overall level of stress and the fear associated with the diagnosis itself. But the other conditions...no.

Though it's incredible how little credence people tend to give to the incredible psychological wound that is inflicted on people who are labeled: infected with a deadly virus. Especially when you are dealing with already marginalized people. Because AIDS is largely a disease of the marginalized (which is worthy of examination in and of itself) and the potential of the disease to further marginalize them is huge.

You take somebody who already feels disempowered because they're gay...and society tells them that they're not only worthless but dangerous because they can " infect other people with their dangerous lifestyle". Then you add to that that you don't deserve to have the same rights and freedoms. Who also lives with the day-to-day danger of becoming another Matthew Shepherd. Then you throw-in the deadly infection that you got precisely, "because you are the bad person that we all knew you were."

JOHN: Becomes a self-fulfilling prophecy...

CARL: Precisely and no one, that I have seen, in the orthodox AIDS establishment deals with, on an ongoing basis, this incredible synergy of negativity. This fellow was trying to deal with all of this shit...how was he going to see through all of this fear-mongering.... and it ended-up being an opportunity to deal with a lifetime of internalized homophobia and self-hatred. Despite this he choose to follow a bright, spiritual emotional, and, I guess, biological approach to healing. But for him the biggest healing was from the wound inflicted of fulfilling society's gay prophecy of being sick and dying young. It's been an incredible journey for him. Then he had the good fortune to meet a wonderful traditional Chinese doctor.

JOHN: Ah yes, this brings me to questions about Doctor Liu. Comments on her and her theories and work with patients? (I must admit that when she sent her brochure around I was a more than a little suspicious being a student-practitioner myself. I found her quite guarded the day Rob and a translator and I went to her clinic. However, afterwards, when I spoke to several of her patients, my general impression was that she seemed to be employing sound TCM methodology).

CARL: Certainly everything that I've heard about her and my own personal experience of her have been extraordinary. The fellow were speaking of, patient X...

JOHN: Did you ever accompany him when he went?

CARL: No, but I did go myself. He had great success dealing with some long-standing respiratory concerns and some digestive problems as well. Really wonderful success with them. She was a very traditional practitioner and she would not actually treat you if you were simultaneously on HIV treatments as patient X informed me. Because to her, it was like trying to put out a fire while you were pouring gasoline on it. She said this was a losing battle and was frankly not worth her energy to be putting out fires that you are creating yourself. Her approach was to eliminate all toxic intake. To make dietary and emotional changes.... I have to say that for me she was a person who exuded a compassionate, loving, healing feeling. She was an extraordinary person. One of only a very few practitioners that I visited and instantly felt that she was worthy of trust. Her manner was confident and compassionate and clear. So comforting and so non-judgmental. She talked a lot about fear; she talked a lot about what her treatment recommendations were. She did employ a very traditional TCM approach to acupuncture, to moxabustion. Personally, I found her acupuncture very healing and very helpful. Though his condition was not the same as mine, patient X said he had some very positive results from his treatments. Also, I think this has a lot to do with whether or not you instinctively identify with that healing modality. What I found so comfortable and appropriate might feel invasive and stupid to somebody else. Which is why we are so blessed to live at this time when we have access to so many healing modalities. One can find the practitioner and the approach to healing that is most suitable...or combine those healing modalities. At HEAL we would like to see more of that. It's my dream one day to establish a kind of an alternative health insurance plan, initially, specifically for HIV positive people, so that we can help people carry the financial burden associated with alternative healing. One of the things that prevents pursuing alternative healing is that it's so much easier to have your pills paid for by OHIP than it is for you to go out and to earn money to buy, say, the Pau d'arco tea or pay for the acupuncture treatments and all of those things on your own time...

JOHN All of which is much cheaper in the long run...

CARL: For society and for the individual. Because, ultimately in my view, with alternative medicine you are treating the causes rather than...well, you're rebuilding the boat rather than just plugging the holes.

JOHN: I understand that Dr. Liu is no longer in Toronto and I wondering if patient X was seeing anyone that you are aware of presently?

CARL: I think he picked up with another TCM doctor. The bottom line was that TCM was very helpful and I think he wants to continue.

JOHN: And those treatments are helping?

CARL: As far as I know.

JOHN Nicholas Regush and his enlightening account of the HHV6 virus in his book, The Virus Within. I thought that his overview of AIDS and immune disorders, the history and the various personalities, the medical hierarchies and the politicking were very well done. Also, he gets the entire cast in there from Gallo and Duesberg to Papadopulos-Eleopulos, I've only recently read this book and thought it unfolded as a kind of mystery play with a Miss Marpleish cast of characters. Not so much whodunit, but who'll solve it. I was waiting for him to wind-up all of this along with the discoveries of Knox and Carrigan, when the book abruptly ended. How did this book resonate with you? (I should add here that HEAL brought Regush to Toronto, to Ryerson--what was it, about a year ago?)

CARL: I found it fascinating for many of the reasons that you cited. I'm skeptical of the idea that a single viral infection could be the cause of any human illness without other contributing factors. Regush has done us a great favour in bringing to light another interesting facet, and possibly a very important facet, in our understanding of the complex problems faced by people with acquired immune deficiencies. It's a discussion. It's an important idea that deserves open discussion and no one should be controlling what is discussed or how many people know about the discussion. Anything that challenges a status quo of any kind has got to be good for everybody. It reminds us that the world is never static and it is never what we think it is.

JOHN: So that was why HEAL brought him to Toronto?

CARL: I thought it was important for a journalist of his caliber and respectability to be seen asking intelligent questions. It also further dispels the idea that somehow AIDS and HIV reappraisers are uniquely crazy. He's a very intelligent, thoughtful, extremely professional and well-experienced medical journalist. An important book and one that deserves to be read by many people...

Note: The conversation veers off here into some generalized chat about the Gallo vs. Duesberg controversies that are not germane to this interview and are adequately covered in 'The Virus Within' or at the HEAL Toronto website.

CARL: ...Duesberg said 13 years ago that HIV didn't infect enough cells, assuming it had a disease-causing mechanism, it still doesn't infect enough cells to cause the disease. It doesn't have a disease-causing mechanism that anyone has been able to identify. So even if the immune system was turning-in on itself, because it perceives certain cells to be infected, HIV doesn't infect enough cells to cause that auto-immunity. It just simply doesn't. And that should have been the end of the theory then, and what people, in my view, scientifically would be wise to do, is look at: is there a greater significance to HIV antibodies (that we have ignored)? Does it have some other immunological significance? Or, is the association between HIV antibodies and AIDS entirely artificial and entirely manufactured?

However, I do not think that HHV6 is the answer either. I'm of the view that AIDS is multi-factorial. That there are many different, cumulative, contributing factors. That any combination of those cumulative, contributing factors can result in acquired immune deficiency. It will never be as simple as: you get infected because you had sex with an infected person and you get the same disease. It will never be that simple, because there is no other disease that's that simple.

JOHN Bring me up to speed on the 519 issue (or any current issues of interest to HEAL).

CARL: There are two major issues that face us at this present time. One is the difficulty in having the financial resources to make information more available to the public. Because we don't accept money from pharmaceutical companies, government agencies or any person or institution with a vested interest in limiting the questions that we can ask, or the answers that we can receive. There are very few people who will really give a group money to use it as they please with no strings attached. So, it does limit what we can do financially. It doesn't limit how much we can talk--which we do a lot of. We raise what little funds we can, as we need them. The other question of course is, our inability to secure a regular meeting space at the 519 Community Centre. I emphasize community because the 519 has shown itself to be anything but a community oriented organization, in that it has repeatedly refused us the right to freely assemble in a public building. A building funded by the city of Toronto. Precisely because of rumor and innuendo and not because of any consistent or legitimate complaint about our behaviour. I can certainly understand that they would want to refuse us access if we had been disruptive in the space; if we had left banana peels and garbage in the rooms that we had been using. But we were model tenants, we were tidy, we were polite. We were friendly and liked, from what we understood. But we were perceived as disruptive because we went to other public meetings and asked questions, at public meetings, on HIV and AIDS. We challenged other AIDS service organizations to examine the information that they were preaching--I certainly experience it as preaching. As a result, we were labeled disruptive, which is understandable because we were challenging the status quo. The AIDS service organizations don't like to admit that they are part of the status quo. Because AIDS is perceived to be a disease of the marginalized, and organizations associated with the marginalized somehow perceive themselves to be immune from corruption, from human flaws and shortcomings. It's as though, well, AIDS is a disease that engenders a lot of compassion and sympathy therefore we all must be really good people who never make mistakes. God forbid that they were actually going to question the information that the drug companies send to us. Or the studies that the scientific establishment is conducting...when, in fact, what we would love to do is work with these service organizations to uncover a broader perspective on what AIDS is and what the tests mean and how to deal with the diagnosis. But the 519 has refused to allow us to bring the information that we have, and would like to share, with the broader public.

JOHN: They remind me of the Harris Tories, actually

CARL: Laughs...It was interesting when asked "why?" they continually changed their reasons. It was as though they couldn't quite settle on the most appropriate reason to refuse us. Because, of course, none of them were really appropriate. It ended-up being about control.

We are a small organization serving many people. Its' been frustrating not to continue doing what we were doing...and we were getting quite a few people out to our meetings. In the range of 15 to 30 people, which is a decent size, quite a good size for people meeting at the 519. However, the people who stand to gain the most by our presence are denied access to our work. So we are not able to reach as many people, or not as many people are able to choose to reach us because of this. And that's how the situation stands at present

Note: a much-condensed version of this interview appears in the Fall issue of INQ Magazine, 2001 <www.inqmagazine.net>. The interview is the intellectual property of John Forbes and Carl Strygg and are under copyright, February 2001.