What really happened to Emery Taylor?

Feb 282011

Note: I’d like to welcome those of you visiting this site from the forums at aidsmed.com. This may be the first time that a mainstream AIDS site has referred to this blog as a “clear-eyed ‘alternative hypothesis’ site,” and I’m flattered. Given that, I hope you will look around a bit. A good place to start would be my own story here. Then read this blog post about AIDSMeds’ decision to prohibit me from posting at their site here.

Not everyone does well with the meds, and Emery’s death is not evidence that they are always the best answer for every patient.

- Jonathan Barnett
Resistance is Fruitful

: Emery Taylor
December 7, 1980 to February 22, 2011

When word first broke last week that Emery Taylor had died, the reaction from many of us who knew him was shock. Few of his friends on Facebook seemed to know what had happened.

Given Emery’s public identity as a person living with a positive test result for HIV and with a diagnosis of AIDS based on his CD4 count, it was inevitable that people would soon start asking about the cause of his death.

Emery walked a line between two camps in the world of AIDS: that of the Orthodox, or mainstream advocates of the generally accepted theory that HIV is the sole and sufficient cause of AIDS that can be managed by a cocktail of pharmaceutical drugs, and the Dissidents, a diverse and sometimes frustratingly divisive group of people that includes factions who question almost everything about commonly held perceptions about the disease. Orthodox AIDS defenders often dismiss such skeptics outright by referring to us as “denialists”.

Emery was known for his very visible and public stance defending his decision to not take antiretrovirals, despite being HIV-positive for twelve years and despite facing declining numbers of t-cells and a rising viral load. On his youtube video entitled UPDATE, posted a year ago, Emery quipped: “My t-cells are so low, pretty soon I’m gonna owe t-cells next time I go. I mean, I have 52. If my t-cells quadrupled, I would still have AIDS. That’s just how low my t-cells are right now (laughing). My t-cells are so low, they’re almost in the negatives.”

Emery came to the AIDS dissident community after finding himself feeling out of place, and even rejected by the mainstream support groups and AIDS service organizations. In his first youtube video, posted January 16, 2010, Emery says: “In the clinics, support groups and community organizations, honestly, I did not feel as I belonged because I was not on drugs, because I was not looking for just the next… piece of whatever, to get. I just felt as if I did not belong there. What I really needed was a support group of people who were just like me. You know, I’m not putting them down, because they’re in their own situations, and so I’m not putting them down at all, I just felt as if I did not belong.”

Emery was also a member and occasional contributor to the forums at Questioning AIDS,an online hangout for AIDS dissidents that I help moderate. His handle there was etay1207, same as his youtube channel. In one post, he relates his experience at other online forums for PWAs:

I’m constantly meeting and chatting with others who are poz. I posted this concern on poz.com and the response wasn’t too friendly. Here’s my issue. I see many people with “normal” CD4′s and undetectable viral loads getting sick with AIDS defining illnesses and other problems that are attributed to HIV. If their problems are due to HIV, shouldn’t I have their conditions so much more? Since my VL is so much higher? I have a good friend now dealing with liver issues. He is UD [has an undetectable viral load] “thanks to the meds” and his t-cells are in the 500 range “thanks to the meds”. But HIV is hiding out in his liver and causing problems. Call me stupid! My viral load is 644,000% more than his. Why is my liver healthy and his is not and they are blaming it on HIV?

Emery exercised his right and his responsibility to ask some fair questions that deserve answers, yet as I review the public record he left behind, I also see enigmas. Emery signed every post at QA, for example, with a list of his counts, which showed an overall decline in CD4 cells and a steady increase in viral load over the 12 years he lived with his diagnosis. His video reports reveal an almost flippant response to the significance of what the AIDS mainstream would describe as the chief markers of typical progression of a poz man. “I am not a numbers chaser,” Emery said, “and I never live my life as a numbers chaser, so I’m not afraid of a low t-cell count, or a high viral load. Actually, I embrace it. That’s just the way I live.”

Emery’s questions are standard fare for people, like me, who are struggling to make sense of what we observe. At the same time, despite what he told us, there is no denying that Emery was not the picture of health he wanted us all to think he was.

“I consider myself healthy,” Emery reported in one of his youtube videos. “So far I haven’t had any ill effect of the low white blood count. I haven’t seen any ill effect of the low t-cell count either.” In another video he simply states: “I have not been sick.”

For those of us who knew Emery from his videos, it should come as no surprise that we were so stunned to learn of his death. He promised to keep us informed if he ever got sick.

Since his death, some on the Dissident side of the AIDS divide have called to have Emery held up as a martyr to the cause, while those opposed to allowing anyone to question the traditional thinking about AIDS were parading him on their blogs as proof that AIDS denialism kills, even before his church could schedule a memorial service.

Emery chose a different path, knowing it might be a short one. In one forum post he writes:

People disagree with me all the time. The number 1 question I get is “What if you’re wrong?” To which I always reply, “Then I’ll get sick!” Now my doctor and other pozzies are afraid that I will “drop dead”. Now let’s think about this. Isn’t AIDS a decline in immune function? Since when does someone who dies of AIDS are healthy one day and dead the next? As long as I’m working 80 hours a week, doing 200 pushups and 200 squats everyday Mon-Fri, running after two 5 year olds when I come home, and running up to NYC every weekend for church, you’re gonna have a hard time convincing me that I am deathly ill.

I am dissident, at the same time I respect other people’s views. My fiance is on meds and even though I refuse the medication, I fully support his decision. I will not insult his intelligence by trying to push my views upon him. Who knows, I may be wrong. I have been before. He is one of the few in my life who knows my views on HIV. All my friends know that I’m not on meds, most don’t know why. We have a few members in my church who have been poz over 10 years (one has been poz >20 years) and are not on meds. People are questioning, they just aren’t as vocal as I am about it. My pastor knows why I’m not on meds. He doesn’t agree with me not being on treatment. But he supports me in my endeavors. I also have a loving family that supports me.

I don’t mean to suggest that Emery’s death was inevitable, far from that. I am looking at the picture he left of his life, to see what the rest of us can learn from it.

Only those closest to him have any clues about what really happened to Emery, and that information has not been forthcoming, at least not on his Facebook page, which has been the primary source of information to date.

I visited with Emery’s husband Billy, about a week after Emery had died, or as Billy would say, transitioned. I wasn’t sure what to expect from our visit, but I was prepared to beg him to share more information, in order to help stop the speculation and rumors that were starting to appear online. There was no need to beg.

: Billy and Emery

“I’m also [HIV] positive, and have been on the meds,” Billy tells me at the beginning of our conversation. “I came off the meds November last year.”

Billy is not your typical AIDS dissident. He does not question or dispute the existence of the human immunodeficiency virus, nor does he doubt that it causes AIDS. “I know HIV exists”, Billy said. “I know it causes AIDS.”

Still, Billy is in good company with much of the AIDS dissident community regarding his opinion that the existing drugs used to treat the immune dysfunction called AIDS are toxic and problematic for long term use. At first blush he may not seem to be a likely candidate for holding a questioner’s point of view, considering his science background and that he has worked in and around pharmacy labs for nearly 20 years. He did not come to his current point of view until fairly recently, having been on ARVs since his own diagnosis in May of 2001*. Knowing Emery has played an important role in his own path.

“We didn’t see eye to eye at first,” Billy says. “Then after talking and reading denialist information, I thought, this is amazing”. He also mentions the documentary House of Numbers as having a strong influence on him, saying it answered a lot of his own questions.

Billy seemed unaware that the term “denialist” is offensive, or that anyone would consider it a pejorative term. “Really?” he asks, “I didn’t know.” I’m thinking to myself, some of the AIDS dissidents I know are going to eat him alive if he says that to one of them!

Billy’s CD4 count is high and his viral load is low, after being on ARVs for almost 20 years. All is not good news, however, as recent labs were showing the inevitable telltale signs of long term ARV use: indications of drug toxicities in his labwork. “The drugs were messing up my kidneys,” he said. Meanwhile, Emery was the picture of health at that time. “I just decided that my husband is doing things differently and is doing well, so let’s go for it.”

The difference between their rationale however, remained. “I know the HIV was still there and needed to be suppressed, just not with toxic drugs,” Billy says.

Shortly after Billy quit his ARVs, Emery’s health took a noticeable turn for the worse. He lost a lot of weight in December. Billy talked him into visiting family, hoping that they could help him convince Emery that something was wrong. Emery protested that he had always been thin. “Not like this,” insisted his mom and other family members. They all concurred that Emery’s weight loss was quite noticeable.

He also began to experience difficulty breathing, and the chest pains he had been reporting for the last year returned, and then worsened.

The sicker he got, the more Emery balked. “No, Billy, I don’t need the drugs,” he told his concerned husband.

Eventually, Emery was hospitalized briefly, but he released himself, refusing the doctors’ requests to start AIDS drugs, or even perform any more tests for HIV. When he developed a swollen parotid gland, the doctors suspected lymphoma, but the tests came back negative for cancer. Then they suggested it could be tuberculosis, but no, Emery did not have TB. “It looked like he had a second head on his neck,” Billy tells me.

(I have to disclose here that at this point, my own mouth was dropping, because everything Billy is telling me is eerily reminiscent of what I have been through myself this past year, though I have managed to keep my CD4 count much higher than Emery did.)

Emery had been complaining of chest pains as early as December 2009, on the QA forums. He had appointments with a cardiologist in February 2010, but a battery of blood tests and workups revealed no problems with his heart. “Probably gas,” the cardiologist told him.

While Emery was in the hospital a year later, doctors did find the source of the troubling chest pains and that proved the final blow for Emery. KS. Kaposi Sarcoma. One of the original AIDS-defining diseases, was disseminated in Emery’s lungs. There was more KS on his upper thigh. Billy prefers to call it a “sort of cancer”, hence the less-than-accurate Internet reports that Emery had died of lung cancer.

Emery finally broke. He agreed to take ARVs, and the doctors prescribed Atripla, but Billy is not sure Emery took the drug regularly, if at all.

All this time, Billy had been doing his own research, for both Emery and himself, searching for evidence that there were better ways to fight the virus, without the problematic and eventually lethal adverse effects of the ARVs. He came across the Foster Health Group, a website that sells nutraceuticals, based on the research of Dr. Harold Foster.

Billy has been taking some of these natural health products since he quit his ARVs, and he was convinced that Emery could benefit from them as well, but that he would require higher doses, at least initially. With help from Emery’s mom, they also started to juice raw foods in an attempt to improve Emery’s nourishment. Despite his claims to being a healthy young man with few vices, Emery admits that his life as a trucker did not lend itself to having a healthy diet. “All I eat is steak and potatos,” he said. “I’m a truck driver, that’s what we do. There are no apples or oranges in my truck, I swear to God, there just isn’t.”

The supplements Billy ordered for Emery finally arrived from Canada. The shipment had been held up at the border, first by customs officials who then called in the FDA to conduct an investigation. FedEx handed the package to Billy nearly a week after Emery had transitioned.

“I am going to carry on his legacy,” says Billy. “I want to reach out to people with HIV who need help and who cannot or will not take toxic drugs.” Billy says he is committed to finding alternative treatments and he does not believe Emery had to die when he did. “It just wasn’t his time.”

*Correction: The original post incorrectly stated 1991.

Links to Emery online:

youtube
facebook
myspace
posts on the Forums at Questioning AIDS

PDF

Pingback: Google
http://pulse.yahoo.com/_6OSMWBMSCU7TJOTGER6SP2FCCQ Gilles S

What were the supplements that Billy ordered for Emery from Canada, received too late because delayed at the border by customs officials?
- http://resistanceisfruitful.com Jonathan Barnett
  
  I don’t know specifically which supplements Billy had ordered, Gilles.
StarZ

I think Billy should be given the chance to clarify the extent to which poppers were used. It is hard to read this without thinking that there may have been past or present use. StarZ
- http://resistanceisfruitful.com Jonathan Barnett
  
  I’ve already addressed your question about poppers in the comments on my blog, as well as on the forums at QA, but here it is again:
  
  “I wondered if Emery huffed poppers too. I asked and Billy did not answer. It wasn’t an important enough issue to pursue in order for me to tell the rest of the story. The evidence for the dangers of poppers and their correlation to KS is substantial and does not need any additional contribution from Emery to be valid.
  
  If you’re a gay man and doing poppers, you are putting yourself at grave risk of disease and even death. I think we could make this the first bullet point on the list of likely and probable contributing factors that cause ‘AIDS’.
  
  It’s also very possible that Billy or others who knew Emery would not know of past use of poppers, so we may have to settle for not knowing everything we’d like to know.”
  
  Billy has since told me that Emery did not use poppers or any other drugs. I’m not going to speculate further, but if someone who knew Emery personally, including Billy reports popper use, I’ll report it. Otherwise, it doesn’t matter, imo. Emery is not the first, nor will he be the last AIDS dissident to die of suspicious health problems.
Mike Stewart

Jonathan,

Just found your website … and its phenominal.

Just wanted to say “thank you” for all you do not only for the Dissident Community but for those who suffer (in so many ways) since AIDS came on the scene.

Regards,
Mike Stewart BSTI PFT
http://www.mikestewartfitness.com
Texas HIV/AIDS Reappraisal Committee
Robert Kowalenko

This is my first experience of a dissident/denialist website. People… I don’t understand, but I’m trying to, honestly. Most of you are obviously well-educated and intelligent. How is it possible to take such strong evidence and spin it around, and wind up believing there are rationally strong enough grounds do doubt that HIV causes AIDS, even when your own life is on the line?

Of course, one can always doubt everything, scepticism is always possible, even that I have 2 hands and 2 feet, that’s just the nature of knowledge. And there never will be a ‘proof’ that HIV causes AIDS, as Duesberg keeps insisting we find, because in empirical matters, there is never proof (you can only prove mathematical truths). But there is reasonable and unreasonable doubt, and an intelligent weighing of the evidence. Some people (they, too, apparently intelligent), believe that the Earth is flat, or that it is only 6000 years old, and manage to reinterpret the overwhelming evidence to the contrary to suit their beliefs.

The data is just so overwhelming that ARVs have reduced the number of deaths of HIV positive people the world over (especially here in South Africa), that I really struggle to understand how someone who appears to be fairly even-keeled, as the author of this piece, can neglect it. Even if ARVs have strong side effects, they are preferable to death. Please, people, take them. I have seen too many people die down here in SA, because they weren’t even given access to them. You have the luxury of being able to take them, and walk away with your life. Even if your kidney has problems. Isn’t that the lesser evil.
- http://resistanceisfruitful.com Jonathan Barnett
  
  Robert,
  If this is the first time you’ve visited any AIDS dissident websites, then you’ve just answered your own questions. The data that HIV is the sole and sufficient cause of ‘AIDS’ is not so overwhelming as you seem to assume. I’m not one to question whether something that’s been called ‘HIV’ exists, only that it may not be what Gallo claimed it to be.
  
  You called me “even-keeled”, and I think I am too. I could have written your comment myself ten years ago, so let me see if I can appeal to you with a question of my own: how can you possibly accept that a single infectious virus is the cause of such very different illnesses in Africa, and in the the West?
  
  I’m personally grateful that ARVs exist… for those who find themselves in desperate health. I do not for the life of me understand how anyone can accept that they be prescribed for a lifetime of use in otherwise healthy people, given their toxicities.
  
  I’m glad you read this article. Emery live 12 years without ARVs. Who knows what his health or his life would have been like if he had been on AIDS drugs for that long? He might have died of liver disease, heart failure or cancer. We will never know.
  
  You urge people to take the ARVs, but I’ve taken them before, and I can tell you they are not an acceptable option for me, unless I am at death’s door. I may die next year, but I will have had 9 years without the horrific, and debilitating adverse effects.
  
  What matters more than whether someone who tests positive for ‘HIV’ takes ARVs or not, in my opinion, is that they are given all the information they need to make an informed choice. There is no single right answer for all people, and your suggestion of ‘spinning the evidence’ is assuredly true of the mainstream AIDS messages.
  
  I hope you continue to visit and read sites that don’t fit your well established point of view.
  - Robert Kowalenko
    
    Hi Jonathan, thanks for your reply. I’ve stopped at your website, rather than others, because you’re one of the very few on this topic who is not yelling hysterically at the top of his lungs.
    
    I’m not a medical doctor, but a philosopher of science, and I need to understand how people who are apparently capable of weighing evidence and of understanding (moderately) complex arguments, can wind up on the wrong side of a question. It’s an epistemological riddle. It’s not up to me to engage Duesberg and the others on the medical facts, but the point is that there have been sufficiently many who have already done so, with excellent arguemnts, and without effect on the denialist community. The problem seems to be that political/cultural/ideological beliefs seem to make a cold-blooded appraisal of the evidence impossible for you, and I want to understand why. The problem seems to be slightly parallel to one of convincing a young earth christian scientist that he really ought to take the carbon-dating data seriously that says the earth is older than 6000 years, or, perhaps, that of persuading a die-hard marxist in, say, the 1970s, of both the empirical and the conceptual flaws in Marx’s theory. Other, stronger, ideological factors, stop the rational argument from having its effect…What are those? People discount what the CDC, WHO,
    
    You say the evidence is not so overwhelming. I don’t understand how it is possible, in 2011, to say that. Now, to be clear, I think it would be absurd for me to engage in a detailed analysis of the scientific problem, just as it would be for you (I assume that you’re not a virologist). If we think we’re allowed to do that, then we might just as well discuss whether the latest CERN-data establishes that the Higgs-Boson theory has been confirmed, or whether string theory supports the inflationary hypothesis in cosmology, etc. etc. You see my point. All we can do, as informed citizens, is to consult authority, and critically (yes, critically, but not in a paranoid way) examine the information provided by experts. So, yes, we still do not understand the pathogenesis of AIDS, but then again, we also don’t understand the causal mechanism of how smoking causes cancer, and yet you can read the warnings on every pack of cigarettes, with perfectly good justification. As I understand it, the data associating HIV infection with AIDS now fulfills the Koch postulates for disease causation, when these are interpreted correctly in the HIV case, and also the Bradford-Hill criteria for causal inference on the basis of statistical data (this is how we infer that smoking causes cancer). That’s a very strong association. You must understand that in medecine, anecdotal evidence is almost useless. As friend of mine who is a medical doctor working on tumours tells me: every person is different, every tumour is different, and every disease is different: this one might live 6 months with the tumour, the other 15 years, and you will not be able to explain the difference, or prove that it wasn’t a “miracle”; that’s just how medicine is. So the fact that you have had a terrible time with ARVs proves nothing, neither does Emery’s story, I’m afraid; all we can and must go by, is statistics.
    
    Furthermore, and this is important: almost every scientific theory is a so-called inference to the best explanation”, in other words, it is evaluated by its explanatory virtues. As someone on the wikipedia site on AIDS denialism puts it very correctly:
    
    “…being a dissenter from orthodoxy is not difficult; the hard part is actually having a better theory. Publishing dissenting theories is important when they are backed by plausible evidence, but this does not mean giving critics ‘equal time’ to dissent from every finding by a mainstream scientist.
    — Goertzel, 2010″
    
    As I understand it, the problem with the denialists’ explanations for AIDS deaths is that they are explanatorily unsatisfactory. For example, Duesberg’s (and yours?) theory that AIDS in Africa is caused by poverty doesn’t fit the facts very well, especially in South Africa. Facts such as: mortality rates were rising for middle aged in SA (poverty usually differentially affects the very young and the very old). It has been a well-known fact in epidemiology for more than 100 years that poverty is a known risk factor for many other diseases, a risk factor, not a cause. So the fact that poverty is correlated with AIDS in Africa does not prove that HIV is not the primary cause. Tuberculosis has been known in Europe as “the disease of the poor” long before HIV/AIDS came along. (If you read Russian 19th century by Dostojevski or Tolstoi, you’ll find that the poor in the story always suffer from tuberculosis…) However, poverty does not cause tuberculosis, tuberculosis is an infectious disease caused by a bacterium called Mycobacterium tuberculosis. (neither does poverty cause crime, by the way, though it is an important risk factor for crime). So this answers your question about why the virus causes different diseases in Africa and the West: it does the same thing here and there, weaken the immune system by lowering the CD4 count. But the consequences are different here and there, because, believe me, the south african country side and NYC are very different environments. And, yes, poverty has a role to play: no one down here lives as long as you do without ARVs, because they’re malnourished, have no medical support, and the diseases going around are meaner. If you’re living in an informal settlement in a shack, there will be lots of TB around and other infectious diseases, because people have no money and cannot wash every day. This is why the profile of AIDS is different. Let me finish by quoting an anonymous blogger on a scientific blog, who summarizes the evidence quite well, I think:
    
    “I mean, it’s not like this isn’t obvious. Most people who have HIV get AIDS symptoms very severely; people who take the retroviral drugs do not, and will instead have milder, delayed symptoms in a chronic fashion. Wearing condoms prevents new people from getting AIDS; no one gets AIDS without exposure to blood or semen from an infected person. Even if it were not for the virology research into the subject, simple common sense and reason shows that AIDS is a sexually transmitted virus. Unless there’s another sexually transmitted virus that might cause it.”
    
    Every thing he says in here is factually correct, even though your symptoms seem to have been particularly harsh (I have not read many reports here in SA about the side-effects of ARVs being, on average, as harsh as yours). Taken together, I find it hard to understand how people with sound common sense (and you’re obviously one of them) could come to any conclusion other than it is some sexually transmitted virus, let’s call it HIV, that causes AIDS…
    
    Sorry that this was so long. Hope I haven’t wasted my time.
    - http://resistanceisfruitful.com Jonathan Barnett
      
      Oh, I’ll post your comment, Robert, but don’t waste your time writing another one. There are better places to have such debates. I’d suggest the forums at QuestioningAIDS (http://forums.questioningaids.com).
      
      I can’t help but have a couple of observations. You make the same assertions that are commonly used to discredit AIDS questioners by calling us ‘denialists’ and comparing us to flat-earthers (or to be fair, in this case, Christian Creationists and 1970s Marxists, rather than taking the time to actually review and respond to the arguments made by dissident scientists, scholars and philosophers.
      
      Every point you have tried to make here has been made dozens of times elsewhere in comment threads across the web and there are logical and sound rebuttals to each of them. I’m not going to address your long comment point-by-point, because then you’d feel obliged to continue an argument that has been going on for three decades now. However, since this is my blog, I do hope you’ll forgive me for wanting to have the last word.
      
      The gaps in some of your logic is astounding. You argue that correlation of poverty to AIDS in Africa does not disprove the HIV theory of causation, yet the entire HIV = AIDS theory is based on correlation. You want to have it both ways.
      
      You quote an anonymous blogger to summarize a position I don’t necessarily disagree with: that “HIV” is a marker of immune distress that can lead to serious illness and death. As a non-virologist, having read both sides of the question, what I do take issue with is the “scientific evidence” that either Gallo or Montagnier isolated an infectious, exogenous (external) pathogen. I reserve the right to change my mind, of course, but it makes far more sense to me that HIV is cellular marker, or messenger of distress, generated by our own body.
      
      Regardless of this debate, I do not see how you or anyone who follows the research trials of ARVs can possibly minimize the hazards of adverse reactions from these drugs. People with AIDS today die of organ failure and cancer, not pneumonia and KS, as those first clusters of gay men did in the early 1980s. In your own part of the world, HIV-positives don’t take their ARVs to improve their health, but end up selling them on the black market to make “whoonga” (google it).
      
      As one of those caught up near the epicenter of this disease, I take issue with the failure of Science to continue to consider alternatives and options. Everything was settled when Heckler and Gallo announced the “probable cause” of AIDS, and we now know that Gallo’s research was pathetically flawed and has NEVER been repeated by anyone! That is reason enough to be skeptical, Robert. Too much good science is being dismissed for reasons political and economic reasons. When people like you embrace the flawed science of corporate funded peer-review, and Pharma backed research to the exclusion of everything that doesn’t fit that very narrow model, and call it “evidence based”, you have lost your right to call yourself a philosopher, imho.
      
      Finally, let me be clear about why I see no reason to further engage you in this debate. You wrote: “I need to understand how people who are apparently capable of weighing evidence and of understanding (moderately) complex arguments, can wind up on the wrong side of a question.”
      
      That is not the statement of a philosopher; it is a statement of dogma. In your first post, you begged people with ‘HIV’ to take the drugs. That’s not a philosophical position, it’s an evangelical one. I think you are being very disingenuous about your beliefs, and that’s exactly what we’re talking about here. You write about scientific evidence, when what you really mean is the evidence you’ve chosen to believe.
      
      Science has a sketchy track record at best, and is known for being wrong as well as being right.
      
      I hope my response doesn’t come across as “hysterical”, but it is difficult to maintain poise with someone who on one hand flatters me for being intelligent, rational and reasonable, but who then also addresses me as though I am delusional and under the spell of “denialism.”
      
      Thanks for this opportunity to re-consider my own points of view and motivation for doing what I do. I hope you continue to try to understand the effect that “political/cultural/ideological beliefs” can have on “a cold-blooded appraisal of the evidence.”
      
      ADDED: I just noticed that the question of poverty and AIDS death rates in Africa is being discussed in this thread at the QA Forums. Why don’t you check it out? (http://forums.questioningaids.com/showthread.php?p=50297#post50297)
    - http://nerosopeningact.bandcamp.com Gos
      
      Robert,
      
      As a member of QuestioningAIDS.com, I would like to echo Jonathan’s invitation to join us there to engage in respectful debate and discussion of the evidence for and against the HIV/AIDS hypothesis. We may not change your mind (and that’s perfectly OK,) but if it is your wish to better understand why we hold the opinions that we do, I can’t possibly think of a better setting in which you might study the matter.
      
      As a philosopher of science, you must surely be aware of the fact that historically, “overwhelming published scientific evidence” has far more often supported falsehoods than truths. We live in a world in which human science has given us failed theories like spermatorrhea (the belief that masturbation causes blindness, insanity, and other disease,) feminine hysteria (the belief that women’s uteri wander throughout the body, causing irrational behavior,) nuclear winter (the belief that nuclear war would cause a reverse greenhouse effect and cause a global ice age,) numerous theories purporting to “prove” the medical benefits of infant genital mutilation, and the dark matter hypothesis (the preposterous belief that 4/5ths of the mass in our universe is made up of this magical form of matter that doesn’t take up space and doesn’t interact physically, electrically, thermally, magnetically, or otherwise with ordinary matter and energy, and has nothing in common with ordinary matter, save that it exerts a gravitational force.)
      
      I say this not to cast aspersions on the practice of science, for this is as it should be — If scientists did not spend so much time exploring dead ends and wrong theories, science would not be nearly so effective at eventually finding the right answers. But you must understand that scientific truth is only discovered *eventually* if at all. Nowhere in the history of science will you find an example of scientists getting it right (or even close) on the first try. Instead, you will find that the first attempt (or several) to explain a given set of observations is spectacularly wrong, and that at least one generation of scientists (usually more) go to their graves defending these failed hypotheses and theories — usually by citing the “overwhelming evidence” of published articles produced from within an atmosphere of consensus bias in favor of whatever wrong-headed assumptions that we considered to be “scientific fact” in a given century.
      
      I’d like to take a moment to address a specific point that you made.
      
      You wrote: “Now, to be clear, I think it would be absurd for me to engage in a detailed analysis of the scientific problem, just as it would be for you (I assume that you’re not a virologist). … All we can do, as informed citizens, is to consult authority, and critically (yes, critically, but not in a paranoid way) examine the information provided by experts.”
      
      By the same logic, if one has questions about the existence of God, he should only consult with recognized authorities on God (ie church officials and the like,) and under no circumstances should he consult with any agnostic or atheist, because these people lack expertise on God.
      
      I don’t need a medical degree to tell you that masturbation does not cause blindness. In fact, I doubt you could find anyone with a medical degree of any sort in the present day who would contradict me on this. But this was not always the case. If I had stated prior to the mid-20th Century that masturbation is medically harmless, would it matter that I have no medical degree, or would I be wrong purely by virtue of the fact that everyone with a medical degree disagrees with me?
      
      Likewise, I don’t need to be an astrophysicist to be qualified to hold the opinion that dark matter does not exist. All I need is the intelligence to comprehend the evidence for the existence of dark matter, and a well-honed skill with Ockham’s Razor, to know that the real explanation for the observed phenomena (excess orbital velocity of stars on the outer rims of galaxies and excess gravitational lensing) is more likely to be attributable to an eensy-weensy error on Newton’s part, than to the patently preposterous proposition that 4/5ths of our universe is made up of dark matter.
      
      As any engineer will tell you, in any mathematical formula which contains a minor error may appear to be perfectly accurate on a small scale, and be miles off when applied on a larger scale. Newton, having never seen any orbiting body beyond the orbit of Jupiter, was only able to test his laws of orbital motion on the relatively small scale of our Solar System. It wasn’t until the early-mid-20th Century that astronomers began to attempt to apply Newton’s formulae on the interstellar, intragalactic and intergalactic scale (whereupon they discovered the aforementioned discrepancies between Newton’s predictions and the apparent gravitation of galaxies at and beyond their outer edges.) The principle of least hypothesis would lead automatically to the conclusion that Newton was just a *wee* bit off, but instead, people with a lot more degrees behind their names than I insist that instead, there must be this magical form of matter that is invisible, doesn’t take up space, has no electrical charge, etc, and not only this, but it’s so abundant that compared to dark matter, ordinary matter is positively scarce in our universe.
      
      Now, c’mon — which of these hypotheses is patently ridiculous if you think about it for more than three seconds? Do you need to be an astrophysicist to opine or at least suspect that the dark matter hypothesis is far more preposterous than the well-precedented hypothesis that an earler scientist was less than 100% correct?
      
      The most hilarious thing in all of this is that if scientific history is any indication, in 100 years or more, scientists will acknowledge that there’s not such thing as dark matter, but they’ll blame religion for the fact that anyone ever believed otherwise. That’s what they’ve done with masturbation, hysteria, and to a lesser degree, circumcision (I say “to a lesser degree” because they’re still looking for medical justification for male genital mutilation, as evidenced by more recent theories that it prevents HIV transmission. But they’re still quick to blame all of the previous failed theories about the supposed medical benefits of circumcision on religious influence, while claiming that the *current* lame scientific excuse for this barbaric practice is rooted in sound science.)
      
      Incidentally, Tissot said the same thing about previous theories on masturbatory disease — all of the old reasons for believing that masturbation was deadly were rooted in the Bible, but his treatise to the identical effect was rooted in “sound science”.
      
      Do I need a degree to disagree with Tissot? Or Zwicky? Or even Almighty Gallo? Is there some magical property of sheepskin that confers infallibility on the bearer? What of those with degrees who do disagree with these fine men? Is Duesberg, as one of the leading experts in the field of retrovirology, unqualified to hold his opinion that HIV is a harmless passenger virus? Is Gallo, whose academic credentials are no more than equal to Duesberg’s (and who once said of Duesberg, “Peter knows more about retroviruses than any man alive,) somehow a more credible source of information about HIV than Peter Duesberg?
      
      By all means, accept Jonathan’s invitation to QuestioningAIDS. I think you’ll find it quite stimulating and enlightening, perhaps even in ways you’d never imagine.
    - Wunderland
      
      I’m not an “AIDS denialist” or a fervent Christian, but I will say that I believe that when studies are undertaken with a biased point of view, you tend to reach the result you were hoping for. And even if the evidence only slightly leans towards your side, you shout to the roof top “I have proof.” I feel like time and again, that has been the case, e.g., marijuana use, meat-eating. So, personally, I too would take any information that I read from scientists (who aren’t particularly smarter than us, just better educated on a subject, i.e., with groupthink and the possibility of error they CAN be wrong) with some level of skepticism.
      
      Also, keep in mind what scientists know about a disease today could change 180 degrees ten or 20 years from now. Just until a few years ago scientists thought ulcers were caused by stress, now it’s clear it was caused by a bacteria. Today people are convinced a virus causes cervical cancer, when they had no inclination to believe that before (I’m still not particularly convinced a virus does cause cervical cancer – I guess a lot of other scientists arent’ that convinced, either).
      
      I do understand what you’re saying, how people will buy into a theory, that has less evidence than the one it contradicts, risking their own lives. I usually view both with the same skepticism. I see all these people touting homeopathic cures in their new book for $39.99. To them I respond “How the heck do I know YOU aren’t as bad as the big, bad drug companies trying to exploit my quest for long life?” But at the same time, if my doctor prescribed A, and I hate how it makes me feel, especially when I don’t feel that way when I’m not on it, my common sense is going to kick in at some point and I will either A) believe that his way is the best route and my feeling of wellness when I’m off the drugs are giving me a false sense of security b/c something really bad could be happening that is latent or B) wonder what if this is doing more harm than good and I’m sticking with this like a fool. My body isn’t a machine that’s working against me, if I get burned I feel pain. I don’t consider that pain as sign to keep being burned.
      All I know is, the only reason I ended up here, is because someone I love dearly is living w/ this, and I want some kind of hope that he can live as well a life as someone not positive and for as long.
http://resistanceisfruitful.com Jonathan Barnett

I will not be approving any more comments that contain unverifiable speculation about Emery’s health, sex life or personal habits; commercial links; or links to unsubstantiated “cures”. Thanks for understanding.
Aixur

My opinion about his death is the following.

With the symptoms his friend is reporting (loss of weight during a long time, difficulty breathing, chest pains), I think Emery was taking some products containing opiates. It doesn’t need to be recreational drugs. There are many medical products containing opiates. And there are other medical products which have the same effect than opiates, like beta-blockers.

And opiates make you losing weight because of loss of appetite and eventually vomiting. It also provokes a low blood pressure by dilatation of blood vessels. This low blood pressure is reinforced by the loss of weight. Because of that, you can have chest pains because your heart starts sometimes to beat faster to counterbalance the low blood pressure (not all the time, because opiates prevents your heart to beat faster). And with the loss of weight, you are dehydrated. Then you can have difficulties to breath because your lungs are not hydrated well enough.

Then he began taking ARV’s and it was fatal. Why ? Because when you have lost weight and have a low blood pressure, taking that sort of products leads to a sudden and massive mobilization of blood and water in the abdomen, thus creating an even more important low blood pressure in the other parts of the body. This low blood pressure is then so huge that it becomes fatal. It the same thing than doing a fast during 20 days, and then taking an enormous meal.

The fact that he hasn’t been taking ARV’s regularly was even worse, because it was multiplying the occasions of a fatal cardiac problem. Because 1) when you take them regularly, your cortisol rate increases and thus, your blood pressure increases too. Then, the danger of a heart attack when you take them decreases. If you don’t take them regularly, each time you take them again, the risk of a cardiac arrest stays the same ; 2) when you stop to take them, you cortisol rate falls during some times (one week to two or three months), and it leads to low blood pressure. Thus, when you take them again, you are even more at risk of having a fatal heart attack.

For me, the Kaposi diagnosis is bogus. I think at some point of his life (even ten years ago), he has been taking poppers or medical products which are aggressive for the lungs. Thus, he had lesions on his lungs which were visible on x-rays. Thus, as his physician didn’t find tuberculosis germs, he said it was Kaposi. And of course, if they make a biopsy of the lungs, they will find lesions, since there are lesions.

The diagnosis of pulmonary Kaposi is quite convenient for the orthodoxy. Because, if someone has pulmonary problems, lesions on the lungs, and they don’t find TB, then they can say it’s Kaposi. And then, for the orthodoxy, the patient still has an illness specific of aids.

Aixur webmanager of sidasante.com
- http://resistanceisfruitful.com Jonathan Barnett
  
  An interesting, if not very speculative theory Alex, that requires huge assumptions that are impossible to validate. Are you suggesting that poppers are also responsible for the lesions diagnosed as KS on Emery’s legs? Is this alleged illicit drug abuse also the cause of the lymphatic mass on his neck?
  
  Even if your theory proved to be exactly what happened to Emery, it only lends even further credence to the probability that Emery could still be with us if he had paid more attention to the warning signs he had.
Elizabeth Ely

Please consider the stress these, yes, “imperfect” tests produce in someone who is ill and already frightened. Against that, it matters less that T-cell counts might have some validity in some contexts.

Worse, a focus on these markers can distract them from further investigating the real sources of their problems. It’s the opposite kind of “denial” — Denial of a real medical problem and symptoms because of faith in these tests.

Emery’s response to low T-cells and high “viral load” was — understandably! — quite different when he was ill than when he was well. He clearly described to me an incident in which he had respiratory distress and left the hospital reassured that he was OK because these indicators were fine. I asked him, “What if they hadn’t been fine?” He confessed he didn’t know what he would do in that case. This was a true conversation I had with him, and I expressed my concern.

Please understand that this is not a judgment against Emery, one of the strongest people I’ve met. It’s a description of what any human being, no matter how strong, is up against here.

Because we fail to recognize just how hard resistance is, we haven’t provided the kind of support that they need. Our activist anger goes nowhere. For example, where, in nearly 30 years of activism, is a lawyers’ network and fundraising foundation to help them enforce healthcare proxies, fight mandatory treatment, defend “reckless endangerment” charges filed by former lovers, and keep their children from being taken away? Or a model for confronting the hard psychological manipulation at work on them? (I note that your “Trackback” links to “The sick psychology of voodoo hexes and pointing bones,” but not everyone connects the dots from that to the utter fiction of a “viral load” number.)

You’re right, Jonathan, just telling them to ignore their T-cell numbers isn’t enough, and doesn’t take account of the subtleties and gray areas of our knowledge. But the alternative to that isn’t a tepid compromise with the facts. It’s a support system in which they can finally find a way to put T-cells and “viral load” firmly in their rational context — and keep them there even when their lives are on the line.

That’s “What Really Happened to Emery Taylor”: A courageous stand against a hurricane of irrationality.
Biden38

I am sure if Emery had been diagnosed with KS and treated in time, he would be alive and well today. There is a tendency for people to quickly test for HIV ignoring common tests, regular diagnoses and common treatments, all because they want to “fight” HIV. It would seem the day we have a cure for HIV we then have a cure for all diseases. This approach is careless of the medical fratenity.
hipodrom

All I can read is that there is a guy that died of KS after 11 years because he didnt take his HIV meds and there is another guy living with HIV over 20 years because of the meds.

and still there are denialists.
- http://resistanceisfruitful.com Jonathan Barnett
  
  Then perhaps you should consider taking a remedial reading comprehension course. Apparently you did not notice the correction about Billy’s date of seroconversion, or perhaps you only read what you want to see. Billy (the guy who was on the meds until recently) has been poz for only 10 years.
  
  BTW, why are you so afraid to be identified with your comment that you have to create an anonymous identity?
Pingback: » The sick psychology of voodoo hexes and pointing bones
http://resistanceisfruitful.com Jonathan Barnett

Apologies for the delay in posting comments. I recently implemented Disqus to manage comments, and I’m still learning how the new system works.
Celia Farber

Thank you Jonathan for this exceptionally honest, open-eyed, unblinking account of the story of Emery Taylor. Thank you for leaving in all the complexities, for not glossing anything over, for allowing all things to be what they are, often unaccounted for, unexplained, unresolved. That’s the truth, the reality we are in. This is journalism at its finest, and I hope you write more.

The only way out is through.
Bigu

thank you
http://www.heallondon.org MikeHersee

Thanks for that update. You didn’t make any mention of either poppers or Septrim. The reason I say that is because – regrettably – I know of other gay guys who continued to use recreational drugs and who refused to regard poppers as being harmful, despite their strong links with KS. It has been noted before that gay men got a high proportion of KS in their nasal passages and lungs. Septrim is almost universally not regarded by most people as an ‘AIDS’ drug, because it’s billed as being ‘preventative’, despite causing cumulative and essentially permanent damage mitochondrial damage, as well as causing oxidative stress. I’m just wondering if you can find out whether those two chemicals featured at all in their lives.
- http://resistanceisfruitful.com Jonathan Barnett
  
  I am trying to followup on the poppers question, Mike, and will ask about Septrim as well. Thanks for that insight.
  
  Several people have posed the same question, so I’ve respond to it on the Forums at QA with this:
  
  “I wondered if Emery huffed poppers too. I asked and Billy did not answer. It wasn’t an important enough issue to pursue in order for me to tell the rest of the story. The evidence for the dangers of poppers and their correlation to KS is substantial and does not need any additional contribution from Emery to be valid.
  
  If you’re a gay man and doing poppers, you are putting yourself at grave risk of disease and even death. I think we could make this the first bullet point on the list of likely and probable contributing factors that cause “AIDS”.
  
  It’s also very possible that Billy or others who knew Emery would not know of past use of poppers, so we may have to settle for not knowing everything we’d like to know.
  - Elizabeth Ely
    
    Jonathan, thanks for contributing this beautiful piece of journalism. I hope that you will definitely follow up on the “poppers” angle. Yes, we all know that poppers cause KS, but linking those drugs to Emery might close the knowledge gap in this case and further accentuate the dangers of poppers.In men who are currently aggressive about staying clean in lifestyle and diet, could a history of poppers use in the past could cause problems — particularly after starting these “cleansing” diets now fashionable in the dissident community? I suspect this was the case for a friend of mine who died a couple of years ago, who had KS lesions all over his body and died of apparent pneumonia.[speculative rumor deleted -JB] I wish his husband all the best in healing and revealing in his own time as his heart directs.I found most compelling the part about Emery posting his T-cell counts and “viral loads” (which neither find nor count virions) while insisting he wasn’t obsessed with them. Obviously, he was. Some have been saying for a generation now that there’s your trouble.My last conversation with Emery was last fall, on the day that he was going to drive me to Curtis Cost’s event at the Albany Houses but apologized for not being able to make it. We talked for a long time, and I remember his description of a recent health scare and how it came out all right — defining “all right” as T-cell counts and viral load. I replied that if it hadn’t come out all right, he might be tempted to go on the ARVs. He agreed, but his fate tells me that a tsunami of illness is too much for anyone to bear. I’m almost ashamed to say I saw his fate then and there. If we define “AIDS” as being in that “Zone” of fear and uncertainty, then people do indeed “die of AIDS.”I we can be honest about this — that even dissidents “die of AIDS” if this belief constellation is what AIDS is — we will go a long way toward helping patients understand that part of the way out is psychological. And we might also highlight for the rest of the world the absurdity of focusing on HIV status when deaths happen among people with various drug histories, lifestyles, psychological scars from the stigma of being gay, and so on. It is highly to be expected that AIDS dissident HIV positives will die at higher rates than HIV negatives; the very thing that led them to get tested — being part of a “risk group” — is a risk of death.I applaud full disclosure. And I want us to be aggressively public about it. Otherwise, most people hear nothing more than the misleading soundbite that AIDS dissidents die of “denial.” They believe that we have to be immortal to prove our point, and I don’t think any of us are capable of that.
    - http://resistanceisfruitful.com Jonathan Barnett
      
      Elizabeth,
      
      I have deleted a portion of your comment as speculative rumor. I don’t see how it is relevant, and it won’t be published here.
      
      While I also saw, and reported on the irony of Emery’s tracking of his CD4 count and viral load, I disagree with any suggestion that those of us who track these counts are creating our own death spiral by doing so. We need to be informed about the limitations of these tests, but to dismiss as meaningless ten or twelve years of declining CD4 counts until they can no longer be found at all is indeed a form of denialism… the kind that can lead to premature death. Emery isn’t to be faulted for tracking his t-cells and viral load, the problem is he dismissed them as irrelevant. I hope anyone who advocates ignoring laboratory markers just because they are imperfect and poorly understood reconsider their actions.
Tony

Thanks for putting in the hard work to do this reporting. It’s a story that needs to be told.

resistance is fruitful

What really happened to Emery Taylor?

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