Do "rethinkers" ever have a point?

In the comments to this post on creationists'/HIV deniers' (mis)use of statistics, several people have been trying to argue that because overlapping membership in the two groups is limited, my comparison of the two is false. I explained:

It's the *tactics* that are the same in both groups: misleading use of statistics as evidenced in this post, cherry-picking the lit, appeals to authority, grand conspiracies imagined, painting scientists as greedy and hopelessly biased, quote-mining, hell, they even each have their own prizes based on an impossible standard of evidence.

Michael replied:

Oh, I get it Tara, however you seem to be of the naive belief that this behavior applies only to AIDS Rethinkers and ID'ers, and you seem to have lost all of your healthy sense of scepticism when it comes to establishment HIV/AIDS science.

and

Tara, is there any, even one minor, tiny, miniscule point worth considering, that the rethinkers have ever brought up on your site in the days, weeks, and months of posts that you have read? Or... Is every word and every piece of evidence that they have brought up pure garbage and untrue bullshit just because they are Rethinkers? Did Peter Duesberg, the National Academy of Science member, ever say one word of truth in all of his books and papers about Rethinking AIDS, or one piece of math that was correct?

I have yet to see you give any consideration whatsoever, to any statement ever made by any Rethinker. I have however, seen you rudely call them all names such as "denialists", and I have seen you pretty much paint every one of them as fanatical nitwits. Is there even one line in all of your threads, where you ever backed a single word that any rethinker has ever said? Even one Tara?

My thoughts after the jump....

Regarding Michael's first assertion that the kind of behavior I mention is limited to HIV and evolution deniers, I've never said that. Indeed, I've noted the opposite. It also applies to many other groups of science deniers, as well. And I certainly have a healthy sense of skepticism about any newly published findings; that's part and parcel for a scientist, even if they accept the "orthodox" thoughts on any topic. I critique a lot of papers on this site, as Michael perhaps hasn' t noticed. But it seems like, to Michael and others, the only definition of "healthy sense of skepticism" is "agrees with me about HIV [or name the issue here]".

Michael also asks if I've ever given any consideration to any statement made by the "rethinkers." Indeed, it's exactly that which got me interested in this area (and in ID/creationism as well). Being trained as a scientist, of course I'd read the mainstream research and learned the "orthodox" ideas, and so when I first heard about ID, or people who didn't accept HIV as the cause of AIDS, or anti-vaccination folks, etc., the first thing I did in all those cases was to find out what arguments they put forward to support their case. I read books and articles and websites on the various (often mutually exclusive) arguments against the scientific "orthodoxy." As readers know, I've been far less than impressed with all of them, and in some cases, outright embarrassed that it's credentialed scientists making such claims. But no, I don't think they're all "fanatical nitwits," nor do I think I've painted them all in that light. (A few of them, well, sure...) For some others, I think their hearts are certainly in the right places, but as I've mentioned previously, I just think they lack the breadth of understanding in the field, and they therefore latch onto one meme ("the HIV tests aren't accurate!"; "a virus can't discriminate by race and sexual preference!"; "no missing links"!, etc.) without really getting how that fits into the broader picture of viral diagnostics, epidemiology, or evolutionary biology. And then once they've been convinced by this, they start to wonder how the scientific community could have "missed" something like this, and this therefore makes it easier for them to buy into the other "rethinker" arguments, including some of the more outlandish ones (such as that HIV doesn't even exist).

Do I think they've ever brought up something worth considering? Sure, but nothing scientists hadn't already thought about. Does HIV work solo? Does a co-factor, such as potentially another virus, increase or decrease the severity and onset of disease? Why doesn't everyone progress from HIV infection to AIDS in a similar time frame? What is the best use of anti-retroviral drugs? How do complex features evolve? What is the best way to reconcile religious beliefs and scientific findings? There are many genuine questions out there, but it's been my impression that "rethinkers" don't honestly want them answered; they simply want to use them as battering rams to beat against the "scientific orthodoxy."

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Either you can't answer it or...

Tara writes: 'But it seems like, to Michael and others, the only definition of "healthy sense of skepticism" is "agrees with me about HIV [or name the issue here]"."

I followed the issue closely during the late '80s & early-to-mid '90s and saw many of the key publications as they came out (A daughter of one of my research advisors actually worked as a tech in on one of the first labs to scale up production of HIV for research). I recall reading the early 'dissent' papers by people that ultimately formed part of the Perth Group, including one cited by Phil Johnson during his earliest forays into the bionet and sci.bio newsgroups. The claims certainly seemed interesting on the surface but as I read the paper, I saw highly selective citations and question begging as well as very poor construction and support of the arguments. The authors even ignored glaringly obvious and published answers to the 'problems' they claimed had not been addressed. What particularly irks me is that over two decades since then we still see long put-to-rest comments about how "HIV infection is so hard to reliably determine" or "HIV requires extraordinary procedures to detect". Every time I read the term 'gold standard' and 'viral detection' in the same paragraph, I flinch in anticipation at the absurdity that is sure to follow. There is a lot of interesting, important, and essential biology to be done in AIDS, as Tara Smith suggests, but much of HIV 'rethinking' is still wedded to notions that haven't been justifiable since the early 1990's. The 'science' of AIDS dissent has not progressed appreciably.

By Unsympathetic reader (not verified) on 10 Sep 2006 #permalink

Unsympathetic,

you said: The 'science' of AIDS dissent has not progressed appreciably.

Can you show me anywhere in the establishment HIV/AIDS research, where any science of AIDS dissent, is ever addressed, other than by the original handful of rethinkers? I ask, as it seems to me, that no establishment funding went into this aspect at all. Would this be due to fear of taking any such research on after Duesberg was "canned" for his 1987 paper critisizing the viral view? Just how much, and what research has been done in the area of dissent by the establishment?

Tara, and Unsympathetic,

What is your stake in upholding the establishment positions in HIV/AIDS? I would really like to know why you both are so intent on upholding the murderous paradigm of HIV/AIDS?

Perhaps, Michael, because that establishment is not some evil, unthinking orthodox cult seeking to crush you beneath it's safety-yellow protective overshoes.

It's scientists, working hard every day to improve the lives of people, who are tired of shoddy statistics, logical half-truths and rhetoric in place of evidence.

"Can you show me anywhere in the establishment HIV/AIDS research, where any science of AIDS dissent, is ever addressed, other than by the original handful of rethinkers?"

I can't parse that question. It seems like two questions rolled into one. Could you be more explicit?

As for examples of the advancement of 'dissent' HIV science we have the debate of whether HIV actually exists as a virus and whether it has been cultured. Those questions were addressed by the 'establishment' over two decades ago and easily demonstrated in labs today. What is the consensus among the rethinkers? Any progress on that front? What is the actual answer?

By Unsympathetic reader (not verified) on 10 Sep 2006 #permalink

"What is your stake in upholding the establishment positions in HIV/AIDS?"

I do not have a stake in upholding 'establishment positions'. One may just as well ask what stake I have in discussing creationism and intelligent design. I am just a biochemist who dislikes B.S. masquerading as science. Yes, one can find it everywhere, but it often concentrates in pockets. When reading discussions of the literature by Duesberg and the Perth Group about AIDS, I suppose take my cue from Inigo Montoya: "You keep using that word. I do not think it means, what you think it means." I am curious how they bend their minds to reach their conclusions, given the available data. These days I have less of an interest in the debate as a scientific discussion and more as a permutation of human psychology.

Here's an interesting (to me) anecdote: One researcher who wanted to evaluate the ability to implant 'recovered memories' decided to test people who claimed to be alien abductees. Susan Clancy found intriguing parallels between the accounts of childhood abuse, 'recovered memory' patients and those of the abductees who clearly could not have had the experiences they claimed to remember. However, in some of her talks, a few dissenters responded with questions like: "How do you know those subjects weren't abducted by aliens?"

Link to Reason article:
http://www.reason.com/links/links120805.shtml

Link to original paper (maybe this works...):
http://content.apa.org/journals/abn/111/3/455

Eric, For the record, I have *never* worn safety-yellow, protective overshoes: Steel-toed shoes and pull-over Tyvek booties perhaps, but never the yellow galoshes.

By Unsympathetic reader (not verified) on 10 Sep 2006 #permalink

As I said, Unsympathetic, there has been ZERO funding going toward the discovery of whether or not Duesberg was correct. It seems you are not even capable of admitting to that little detail. Duesberg begged for funding for the last 20 years. Are you expecting that the rethinkers community has some funding available to move their own assertions forward. So you think we should pay for it ourselves? And with what? How lame, as if we had any funding available, we would have done just that. Any and all funding has gone only toward upholding the establishment position with unproven claims and proclamations, same as you have just done by proclaiming that the question of isolation has been fully addressed and is easily demonstrated. Witness, please show me even one chemist's analysis of isolated HIV from a patient. And if it is so easy to isolate, why are we using antibody tests instead of verifying anyone's supposed HIV infection by actual patient isolation?

Meanwhile, the rethinkers community has been relegated to doing the very best we can with what we have, which is why I am here posting information on this site.

You Duesberg and Rethinker bashers, have not in any way shape or form welcomed any of our information, and instead attempt to portray us as whacko's and fanatics. None of you establishment upholders on this site has even had any direct experience with the affected. You guys have bashed us and claimed that our list of people who were brave enough to publicly sign the rethinkers list are all just a bunch of idiots to be disbelieved and ridiculed. (and there are many well respected scientists who have not signed it as they do not feel the need to stick their necks out or are perhaps afraid of losing positions or funding due to the politics of the issues)

You don't even realize that many rethinkers are people, who were actually diagnosed as HIV positive and thank Duesberg for perhaps saving their lives and steering them away from or off of the toxic AIDS drugs. You jerks have no clue usually, of who you are even communicating with.

Considering that Liver Failure is the leading current cause of death in American HIV positives, and considering that more that 300,000 mostly young men, more than 6 times the number who died in Vietnam, have lost their lives within a very short period of having taken High Dosage AZT, I find it completely insulting and rude, that you clowns have the audacity to compare rethinkers with Creationists and ID'ers. There are no creationists or ID'ers who are told by their doctors to take chemotherapy for the rest of their life, and none of them are suffering from liver failure or lipodystrophy or the many other toxic and often deadly side effects of the HIV drugs. I think most of you people's behavior on this issue is nothing less than despicable considering the serious nature of this discussion. But then again, as I said, neither she nor you know who most of us "rethinkers" or as you jerks like to call us "denialists" even are. As I posted on New Aids Review, and informed Chris Noble:

Many of us "rethinkers" have been diagnosed or had our loved ones diagnosed as HIV positive and many have had near death experiences with the toxic drugs, or had dear friends perish that were healthy before taking the drugs and became ill and/or lost their lives after getting on them. Some of us have had our lovers test positive and had our own very lives at threat by the paradigm, and some had our lovers waste away or die before being gotten out from under the belief and the poisons they were taking.

As for myself, being with a group called HEAL for several years, has afforded me the personal opportunity as well to know a boatload of people who do not take the drugs or took them until they realized how toxic they were and stopped and regained their health, or never took them and stayed healthy for often more than 20 years. I have heard personal horror story after horror story directly from people who were caught up in the belief in HIV and poisoned by the drugs until they broke free of it all. Two of them have been in my employ for 5 years. I also deal with mothers that have been threatened with the state taking their kids from them if they did not give the kid these toxic AIDS drugs.

Three years ago, a scraggly ghost grey and near to death person, who could barely hobble across the road, as his feet were swollen up like water balloons with massive sores, took 5 minutes to cross the street in front of my vehicle. I met him later that evening at a nearby coffee house. He had wandered out of an "AIDS Hostel" where they had him on about 15 drugs. ARV's, antidepressants, cocktail including AZT, and a bunch of pills for all of the side effects. One year prior, his doctor told him he had a year to live. I talked to him about the rethinker arguments and he decided he wanted to get off the drugs. I took him into my home, nursed and fed and clothed and looked after him, including getting his intestinal parasites and candida under control which was causing him constant diarhea, and I made sure he got exercise, food, and whatever he needed. After 6 months off of the drugs, I helped him to get set up in his own apartment. Although he still has a lot of dementia (probably from the azt, although maybe from his own earlier drug abuse), and he still needs someone to come in and help him take care of himself, he is now three fucking years off of the drugs and doing well, considering he was also suffering from near total wasting and lipodystrophy.

Today he is a shining example to his former HIV advocating doctors and HIV/AIDS caretakers of how someone can go even to that extreme of knocking on deaths door, and come back to life once they get off the poisons!

So please do tell me Tara and Unsympathetic, and any of you other Aids Advocates and upholders, just what is your trip in upholding something you have no experience in yourself? Just what is it that you clowns think you know more than I do about the realities of rethinking, and just what is it that you are so damn sure of, regarding HIV/AIDS and the rethinkers?

Oh, and also, Unsympathetic and Tara, please tell me, just who you have taken in and personally nursed and helped to bring back from deaths door.

At my own peril, I'm going to wade into this argument.

My qualifications: working on a PhD in epidemiology; an MD, board certified in internal medicine; a board eligible rheumatologist. I don't bring these up to impress, just to let you know where I'm coming from.

Disclaimer: I don't know the HIV/AIDS literature that well, and I don't know the 'rethinker' literature at all. The below is in response to Michael's post.

As such, I can't comment on a lot of relevant issues. I have no idea who Duesberg is, and I have only a vague idea of what 'rethinkers' claim.

Having said all that, let me address a few things:

1) This guy Duesberg probably didn't get funding to study whatever his theory was because it was bad science. Funds for research come either from the NIH, industry, or foundations. The NIH has to be stingy with its funds. I don't know the exact stats, but I know they are able to fund much less research than the number of applications that they receive. That means they fund research that is based on sound science and has a reasonable chance of success. If the proposal you submit doesn't meet these criteria, it'll get a low score, and won't get funding. Industry and foundations only have so much money too, so even though they may have different criteria for what projects to fund, they're still going to reject proposals that look shaky - it's a waste of money.

So, if Duesberg was really "begg[ing] for funding for the last 20 years" and couldn't find any from any source, it's probably because whatever he was proposing was bad science.

2) Though I don't primarily treat HIV/AIDS patients, I most certainly see them in my practice, and saw them in my training. Many of them go onto appropriate medications and they get better. There is an abundance of literature showing that therapy with antivirals extends life on average (not in every person, but on average). If HIV/AIDS aren't caused by HIV, then they shouldn't get better. But they do. Cause->Effect. Randomized clinical trials are one of the few means of genuinely evaluating cause and effect, and the results of them in HIV treatment are clear.

Do the drugs have side effects? Of course they do. Every substance that you put in your body has the potential to cause harm. Can AZT cause bone marrow suppression? You bet. But that doesn't mean that it will cause bone marrow suppression in everyone who takes it. Are you taking an herbal medication? Just because they're natural doesn't mean they're safe - just look at ephedrine. Enjoy your steak? You've just elevated the odds that you'll have a heart attack tomorrow.

The point is that there is good evidence that antivirals work. It is also true that all drugs have side effects. That doesn't mean we should avoid using them if they have a real benefit.

3) I'm glad your friend got better. But he is the exception, not the rule. There are always and will always be people who get a disease and get better despite not being treated. We've all heard of people who get 'terminal' cancer and miraculously get better. But they are, unfortunately, the exceptions. That's why it's miraculous.

Your anecdotal evidence of one person getting better when he stopped treatment is not evidence that everyone who stops treatment will get better. Once again, there's overwhelming evidence that those who stop treatment, on average, get worse. Yes, there are those who may improve, but they are far and away the minority.

(By the way, his dementia is far more likely to be the result of AIDS, which we know causes it, than antivirals, which I don't believe do.)

4) We are not out to 'uphold the establishment'; we're out to get people better and improve the qualities of their lives. Please try to believe that.

"just who you have taken in and personally nursed and helped to bring back from deaths door"

------------

No, Michael, you tell us. You are making a claim that your anecdote is more valuable than any number of studies that contradict your position. Do you have any evidence to back up your claim? How long was this nameless person in a hostel? How long had they been taking meds? Which ones? What was their condition before entering the hostel? Which hostel? Do they have a record of this John Doe? Is he able to release his medical records and show the world how he survived the evil establishment?

Its a touching story, and I commend you on being such a nice guy, but if you want your story to be more than a warm fuzzy, you need some backup.

Wow Tara, I got busy for the past few months and didn't have a chance to read your site. What do I find but the same discussions, albeit from apparently different people, about what causes AIDs. You must feel like Sisyphus sometimes.

DDS

PS I am firmly in the HIV causes AIDS camp.

PPS Duesburg's original (and subsequent) hyopthesis and papers have been firmly and scientifically falsified. (For references to this statement please see the last 20 years of AIDS/HIV papers in NEJM, JAR, PNAS and JAMA) That is why he gets no USA Federal Government dough. Perhaps he should apply to the government of South Africa for some Rand. Some of their leaders seem to be of the same mind as Dr. Duesberg and (coincidentally?) have the highest rate of AIDS and deaths from AIDS in the whole world.

Can you show me anywhere in the establishment HIV/AIDS research, where any science of AIDS dissent, is ever addressed, other than by the original handful of rethinkers?

If you actually read the scientific literature you would find that there is a constant rethinking going on in the "orthodox" science.

Paradoxically this is seen as a fault of HIV science by the "rethinkers". "See they can't make up their mind. First they say one thing and then they say another. Maybe everything they say is wrong?"

So which one is it? Is HIV/AIDS science not being rethought? Or is it being changed all the time?

By Chris Noble (not verified) on 10 Sep 2006 #permalink

Yah know what Seth, God help you if I ever run into you, cause somebody is going to have to hold me back.

I suppose if he wishes to be bothered by an imbecile like you, and give you his medical records, that is his business.

His name is [edited]
The AIDS Hostel that he lived in for years was the [edited]
His case was administered by [edited]
His doctor was [edited]
His case administrator was [edited]
His mother is [edited]

Michael, you've already been banned once, and sharing such personal information isn't kosher. Tone it down. --TS

By Michael Geiger (not verified) on 10 Sep 2006 #permalink

Tara,
I think it serves no function for one person to post someone else's personal information just to prove a point. I don't know what Michael was thinking but that is just wrong. You might want to delete it.

Michael you might be a great guy but that posting was just stupid. Have MK post it himself if you must.

DDS

"However, in some of her talks, a few dissenters responded with questions like: "How do you know those subjects weren't abducted by aliens?"

Personally I believe it is a killer question. Can you answer it Tara?

How do you KNOW those subjects weren't abducted by aliens?

Hint: Plato can answer that question

One more point regarding Michael's comment. Even if Seth were to try and contact MK's doctor's HIPPA rules should prevent them from even acknowledging that MK was ever a patient. I can't image that MK's mother would be happy with the random phone call asking about her child's drug and AIDS status either.

Why do the HIV rethinkers/deniers start threatening physical violence when their ideas are challenged? Seth's post seemed pretty innocuous to me. Sometimes when listening to a less than exciting seminar I fantasize about a scientist who disagrees with the speaker jumping on stage and starting a fight. Wouldn't that be a great way to work out scientific disagreements. Fight Club Science!

DDS

Congrats, Michael. You have officialy violated your friend's privacy in a spectacularly unethical manner. I didn't think you could sink lower... but then you did.

I may have missed it, but why did you drop "lincoln?" Is it so you can come back after you said you wouldn't?

"Yah know what Seth, God help you if I ever run into you, cause somebody is going to have to hold me back."

-------------

Michael, can I give you a word of advice? Don't physically threaten people. Its against the law, and it doesn't help your credibility very much. It makes you sound like a thug, actually, a person of low morals who thinks that it is acceptable to beat other people up for disagreeing with them... and this is at odds with your good samaritan persona, isn't it?

Your list of phone numbers is all very well, but it isn't documentation. I know for a fact that if I call the hostel, they will not give me any information about who stayed there and for how long. Neither will his doctor, or his case worker, or North County Health Services, and I'm sure as hell not calling the guys mom, nor does the word of some random woman on the telephone count as a document.

So again, I ask you, can you provide any documentation to support your story? It is a warm, fuzzy, friendly story that makes you look good, but it doesn't prove anything, or even HINT at proving anything. I have no reason to believe that its true, and your threats and bluffs, if anything, decrease my willingness to believe anything you say.

Yeah, definitely not kosher. Removed the information.

DDS,

Wow Tara, I got busy for the past few months and didn't have a chance to read your site. What do I find but the same discussions, albeit from apparently different people, about what causes AIDs. You must feel like Sisyphus sometimes.

Yeah, a bit. Luckily the comments on other posts generally go a little smoother.

I will tell you what I was thinking, DDS. I don't care to be considered a liar in something as important as this issue. I consider Seth to be somewhat of a punk for asking for the information in the first place.

As this post is about how it is my opinion that HIV believers show not one iota of respect to anything whatsoever that Rethinkers have to say, all of the above posts by Seth, DDS, Carpus, Chris Noble, and Unsympathetic, just back up my point. Do I feel resentment and anger at all of you? Yes!

DDS, you called my last post stupid, but I don't think my post was nearly as stupid as your own. Thank you for affirming to us all that you are unmoveably biased and unwilling as well, to objectively consider anything with your statement "20 years of paper shows Duesberg was wrong and proves HIV is the cause of AIDS". The 20 years of paper does no such thing. If anything the 20 years of paper and no vaccine or effective medication proves him more right every day. Even after 25 years of this, you are still quite incapable of unbias or open mindedly questioning any of it. Your response up above was nothing if not a spouting off of your own bias and closed mindedness.

To me, all of the responses seem to be from a bunch of biased rethinker bashers who are unable to even question anything regarding the status quo of HIV/AIDS or its causation or the value of the meds. I simply consider all of you to be ignorant and uninformed or biased and closed minded of the issues, and unfortunately, preferring to stay that way.

For Chrissake, I am discussing this issue even with Doctors like Carpus, who have no idea of even who National Academy of Science member Peter Duesberg is, or of how he was bribed and pressured by the establishment to recant in order to re-obtain his funding:

http://www.duesberg.com/about/bribepd.htmland

Carpus, I would hope you are not too lazy or too disinterested to even google his name.

http://www.virusmyth.net/aids/index/pduesberg.htm

and it would be nice if intelligent men such as yourself investigated the issues instead of simply repeating all that you have heard over and over. It would be nice if you could avoid simply repeating big pharma's sales pitches, even though all HIV drugs were fast tracked with no long term study whatsoever, and even quicker to be approved by the pharma assisting FDA, with their stand of how wonderful the meds are and how they are extending lives, when no such thing is proven. And your claim of how AZT doesn't cause dementia is another zinger. But then, for all of the believers in HIV, it doesn't really matter, as you guys all believe that all hiv positives are doomed to die a quick death anyway because they tested positive if they don't take these meds.

I guess HIV positive life according to Carpus' present knowledge dictates that the only thing that causes any brain or mind failure at all is HIV, so just drink up and smoke up and shoot up all the drugs you want, cause Dr. Carpus says No Problem there, your brain will function just fine, except for being eaten up by HIV. When no studies of brain tissue anywhere back any of that up! Just wear a condom, And according to Carpus, the only thing harmful to anyone is HIV. Whatever problem someone diagnosed as HIV gets, it is all due to the HIV, never from illegal or prescribed drugs they are taking, minor side effects like liver failure from HAART aside, everything is due to the magic virus HIV. And Carpus will unwittingly claim this to be true, although he can't back up in any paperwork anywhere of HIV proven to be causing brain problems or being found in brain tissue to be doing anything. Carpus, simply parrots what he has been told many times, and repeats how wonderful AIDS drugs are without being aware or acknowledging that Liver failure directly linked to who takes them is the NUMBER ONE cause of American HIV positive's death. And he tells us how AZT is not know to attack brain tissue! (false).

Dr. Carpus "I'm glad your friend got better, but he is the exception, not the rule" is also seemingly completely unaware that according to the CDC, 250,000 hiv positive americans DO NOT take the medications and do just fine.

Dr. Carpus, at the moment, you are a shining example of the par for the course in the ability of even very intelligent people to not question a word of establishment beliefs about HIV after 20 years of none of the rethinkers having been neither answered or disproved. As a matter of fact, the rethinker movement has done nothing BUT GROW in 20 years, especially among American HIV positives. Even Harpers magazine did a 15 pager on it in the March issue exposing much of what is wrong in HIV/AIDS research. Dr. Carpus, you are also par for the course in being unable to even consider or want to know what the rethinker community has presented for 20 years, or give them an iota of credence.

IMHO, You are all proving once more to be quite full of parroting statements of mainstream establishment crap that is put out by other biased individuals. And not one word of any respect whatsoever, again, from any of you HIV advocates for anything the rethinkers have had to say in 20 years.

Personally I pray to God that each and every one of you HIV sycophants is either someday diagnosed as HIV positive or has someone near and dear to you, your child or your lover, or family member diagnosed as such, and is put on the deadly and toxic meds, as I think that is probably the only way in which any of you might reconsider anything that the rethinker community has to say. Although I am sure, that as you are all listed in the "low risk category", that even if you took a test and it lit up, you would all be declared as HIV false positive, except maybe Chris Noble, unless he too told the test giver that he too was straight.

Hmm. What an interesting response. I guess I'm a parrot! Who knew?

Personally I pray to God that each and every one of you HIV sycophants is either someday diagnosed as HIV positive or has someone near and dear to you, your child or your lover, or family member diagnosed as such, and is put on the deadly and toxic meds, as I think that is probably the only way in which any of you might reconsider anything that the rethinker community has to say.

Michael, how do you know that someone who is near and dear to me has not been diagnosed with HIV? As a matter he has, he's on meds, and doing very well. And thank you so much for wishing HIV on me. I will certainly not wish the same on you.

Good luck in your endeavors.

Michael writes: "As I said, Unsympathetic, there has been ZERO funding going toward the discovery of whether or not Duesberg was correct."

What Michael says is incorrect. DDS's reply nailed it. Duesberg's hypothesis that drug use was sufficient to produce the AIDS cases that arose in the '80s and continues today was tested and found lacking over two decades ago (Actually, the drug use 'angle' was one of the early links considered and eventually discarded because it did not match the ties observed between users and was further hurt in cases where drug use was not a factor. A body-fluid/blood borne pathogen explained the patterns better). As Chris Noble pointed out previously, Duesberg's analyses of the data were poor and incorrect. That Duesberg was wrong is continuously confirmed in studies. As Tara mentioned earlier, there are interesting questions of how cofactors and other moderating influences affect progression but these factors are not, by themselves, sufficient to explain the burst of AIDS cases observed in the past quarter century.

That Duesberg's ideas on causation are repeated even today is exactly the point of the earlier discussion about misuse of statistics and the peculiar inability of some to accept the possibility that Duesberg could be wrong about something significant. It is like a kid reaching into a narrow-necked jar of candies: They want to take everything they can grasp but to get anything, they'll have to leave something behind. And that is where the denialism has been for over twenty years.

By Unsympathetic reader (not verified) on 10 Sep 2006 #permalink

"I consider Seth to be somewhat of a punk for asking for the information in the first place."

-----------

And I don't think terribly highly of you, either, but I'm not the one using outrageous undocumented claims as evidence.

I still ask for ANY documentation. A series of dated blog entries, perhaps. A few, or even one, story in a magazine, available online. You know, any sign at all that you didn't make this story up.

Or, we could agree that it isn't evidence of anything at all, even if true, and you could apologize for trying to use it as a moral bludgeon.

Michael: "If anything the 20 years of paper and no vaccine or effective medication proves him more right every day."

That is a non-sequitur. Knowing the cause of a disease affords no guarantee of treatment, particularly with viruses. There are vaccines being tested (Good heavens! Root-Berstein's -- former HIV 'rethinker' -- current work is involved with this!) and the medications are actually effective for many.

But to continue along that vein, with some knowledge of the source, we can develop some safeguards: Tests developed for the screening of the blood supply have been remarkably successful. Needle exchange programs help too. And viral inactivation treatments for plasma-derived clotting factors and other blood products have saved many hemophiliacs from infection with HIV and AIDS. Treatments prior to birth substantially reduce the chances of the baby's infection with HIV.

By Unsympathetic reader (not verified) on 10 Sep 2006 #permalink

Dr. Carpus, I commend you for the courteous and restrained response to Michael's whiny insinuations. After having met, in this country, some people who deny potentially life-saving vaccines to their children, nothing surprises me any more. If Michael, our vocal "Rethinker", or any one else of that description chooses not to take anti-retrovirals in the event of HIV infection, all I can really do is pity them.

Researchers all over the world (Yes, Michael, there is a world beyond the United States) have been trying for the past 20 odd years not only to understand better the biology of the virus and the dynamics of the syndrome, but also to use that knowledge to design better therapy, more effective prophylaxis, and management of secondary infections which often accelerate the progression to death. The result of all these endeavors lies in the current set of recommendations for treatment and prevention of HIV/AIDS. If Michael and his Rethinking buddies choose to ignore all that, I say: more power to them, even at the risk of sounding callous. Perhaps those few drops of medicine would be better spent on a more deserving patient in some forgotten corner of the world.

I could not find a reference at the CDC website to Michael's gem about quarter of a million HIV positive Americans not taking medication. Even if that were to be true, I would not be surprised - as I mentioned at the beginning. Does this "report" mention anything about the quality of life of these individuals? Does it discuss why they are not taking the medication - is it the high cost, side-effects, unavailability of the medications, or misinformation spread by ill-informed or uninformed nutjobs?

Who is Michael trying to kid here? It is perhaps quite characteristic of his ilk, that he chose to ignore a huge body of evidence - presented by CDC - about the proven benefits of the HIV medications across different strata of the society. Anti-retroviral therapy has drastically reduced vertical transmission of HIV, dimished the risk of infection through sexual transmission, and helped countless HIV positive patients by decreasing the viral load and increasing CD4 counts to prepare them for battling life-threatening secondary infections, tuberculosis, cryptococcosis, P. carinii, cryptosporidiosis and so forth. This has been proved intensely beneficial in many different parts of the world, in many parts of Africa, South-East Asia and other areas where the high HIV prevalence, high morbidity and mortality from secondary infections, and concomitant social stigma are major threats to public health and underscore the dire need for such medications. How many HIV postive/AIDS patients has Michael really handled or interacted with, comfortably ensconced in his United States residence?

But, of course, the reality beyond his known, familiar area does not bother Michael. He is happy to whine and rant about the so-called dangers of HIV medications, and embrace outmoded and dismantled theories of AIDS being caused by the medication. It is a huge conspiracy out there, isn't it, Michael? To force-feed you and your buddies on HIV medication? Go ahead and refuse it. Yay! You are doing great!

Let me inform the patients from other part of the world that some more medicine will be available for them.

For whatever value, heuristic or otherwise, this might have. It applies more to well-financed, organized campaigns but the tactics are used at all levels. I put this together while particpating in a couple SciAm blogs that solicited comments from global warming skeptics. It also fits the evo/ID debate nicely.
.
.
Recognizing Negative Psychomarketing Campaigns
___________________________________________________________.
Some hallmarks of the fingerprint of an organized, professional, negative psychomarketing campaign:
[These campaigns are often completely, or partially, covert.]
⢠focus on "character" of messenger/opponent in a way that allows dismissal of the message/argument

⢠confusion about actual facts at issue

⢠repetitious "talking points" or criticism, easily and repeatedly addressed, that continually resurrect
⢠proponents' certainty of data, often erroneous, that positions are based on
⢠focus on rhetorical argumentation, especially noticeable when new, reliable facts are introduced into larger discussion
⢠difficulty of getting adherents to discuss data/facts and admit error
⢠poor contextual reference, distinguishing personal from organized is difficult, even with good data
⢠sublimation of energy into repetitive debate and discussion structures that produce no results
⢠focus on narrow part of data/issue relative to full amount available [where applicable]
⢠obsession with such narrowness to exclusion of readily available overview of issue

⢠focus off issues of decision-making methodology under obviously time-constrained conditions
⢠through time, new arguments/talking points materialize and rapidly spread [information contagion?]
⢠details and rhetorical argumentation distract pattern-recognition from larger contexts, campaign's existence
⢠kernels of truth in otherwise incorrect but widely held views [Tough to differentiate from everyday juicy stories. Journalists constantly chase these, only to find no story.]
⢠belief opposition succeeds via conspiratorial means, to varying degrees
⢠part of power and/or financial competition between parties on a larger sociopolitical level
⢠patterns/profiles/"scripts" of campaigns discernible, even strategies, with enough data

None of these signs individually, or even several, are demonstrative, of course, and can arise from other causes. One would want to review a wide array of data, such as mass media, to begin to come to a conclusion about the existence of specific campaigns. I note these signs because the existence of these negative- or anti-PR campaigns and the tools for analyzing them are not widely known. These might be considered part of a robust media literacy, something sorely lacking in the U.S.
.

By SkookumPlanet (not verified) on 10 Sep 2006 #permalink

"These might be considered part of a robust media literacy, something sorely lacking in the U.S."

-----------------

I frickin' KNEW somebody had done this research. There is a link, these denialist campaigns are all the same damn animal. Now... how do we use that data?

Getting back to the subject of this thread:

I think everybody is prepared to state that all ARVs have very serious side-effects and that these side effects need to be considered individually for every person.

It is probable if not certain that in many cases the serious side effects may outweigh the benefits of taking these drugs. Some people show serious liver damage other people show life threatening reactions like SJS to some ARVs.

As Michael points out there are a significant number of people that have very, very bad experiences with these drugs. If the drugs were perfect Duesberg would probably not have any supporters.

There are also a proportion of people that test HIV+ and who do not show signs of progression to AIDS after 20 or more years. Again this is a source of supporters for Duesberg.

If "rethinkers" stopped there then I would be a "rethinker". A large proportion of people doing AIDS research would be "rethinkers".

But "rethinkers" don't stop there.

They make up ridiculous arguments that attempt to demonstrate that HIV has not been isolated. They invent their own criteria for the isolation of viruses that if uniformly applied would mean that no virus that causes human disease has been isolated.

They make up ridiculous arguments about why HIV cannot cause AIDS. HIV doesn't have an AIDS gene. HIV relies on perinatal transmission.

They go to wild extremes to exagerate the toxicity of AZT. They say that Kimberly Bergalis was perfectly healthy before she took AZT implying that AZT killed her.

They complain about the definition of AIDS being too vague and yet they redefine it when it suits them to include herpes zoster.

The few valid concerns that "rethinkers" present are also made by "orthodox" scientists and the "rethinkers" conflation of these issues with lunatic ideas about HIV not existing have probably been counterproductive.

By Chris Noble (not verified) on 10 Sep 2006 #permalink

I didn't read all of the posts after my last one but, I just want to say to Micheal that I thought his post (where he listed his friends(?) personal information on a public website and also physically threatened a fellow discussant) was stupid, dumb, ill advised, etc. for those two reasons.

Whether his arguments about the cause of AIDS was stupid...no I don't think it is. It is just wrong.

DDS

My brother-in-law had HIV before the current drugs were available. The side effects may be bad, but death without such drugs was not a walk in the park either. I wish he had had a chance to live, even with toxicity. He is missed.

Antivaxers, HIV denialists, and critics of 'allopathy' have the luxury of modern medicine to save them when their fuzzy thinking doesn't stop their disease. Have we been so sheltered from disease and death that we don't believe it can touch us?

Michael is quite typical of the true believer, who insists that he's right and everybody else is wrong. This was documented in a book by Eric Hoffer some 50 years ago, albeit Hoffers' book was directed at political true believers. Thus, the flat earthers insist that the earth is flat, the YECs' insist that the earth is not more then 10,000 years old, the geocentrics insist that the universe revolves around the earth, etc. Their minds are made up, the facts are irrelevent. Unfortunately, even formerly distinguished scientist such as Peter Duesberg, Linus Pauling, William Shockley, J. Allen Hynek, Brian Josephson, etc. sometimes fall into that trap.

Polio - first medical report, by Jakob Heine, 1840
Salk vaccine - 1953

These things can take a while. Claiming that all that science out there is fake because it hasn't produced a cure in 25 years is faulty logic. The evidence stands on it's own, and disproves Deusberg's hypothesis.

Michael's fried is actually an interesting case study. Many individuals recieving HAART feel better after stopping therapy. But feeling better is not protective against the opportunistic infections and AIDS associated cancers that individual becomes statistically more likely to experience. Again, the statistics are clear. Such an individual has a decreased life expectancy, as opposed to remaining on HAART. Such patients need to see an AIDS specialist who can adjust their regimin to mitigate toxicities instead of faux activists. UK is lucky enough to have just such a person on staff. I'm leaving his name out to preserve his privacy.

Claims that the denialists don't have enough money to run any studies is also false. There are several easy projects that could be performed with the help of a statistician and easily available epidemiology data. Why don't the denialists do this? I'd wager that some have, and when they saw that the data proved them wrong, they declared the data itself to be false.

I must agree that when treating asymtomatic patients the risks of the drugs must be seriously weighed with the benefit to the patient. Liver function should be carefully monitored due to the risks and I think it is adviseable to discontinue treatment in asymptomatic patients that show adverse effects.

I also think it is important to seriously reconsider that the virus is 100% fatal because most viruses are not. So I think it is fair to consider delaying treatment. However there are problems with that as well. For example immune reconstitution syndrome can be fatal in patients with brain infections such as PML as the immune system often does severe damage to the brain when fighting off infections.

So clearly more research needs to be done but I don't think that the entire paradigm is incorrect as the rethinkers suggest.

I must agree that when treating asymtomatic patients the risks of the drugs must be seriously weighed with the benefit to the patient.

Certainly. That's why I mentioned best use of antivirals as one thing that needs to be (and is) considered by scientists studying HIV and physicians treating it. But this is hardly a "rethinker" idea. It's common clinical practice; the risks and benefits are always balanced as much as possible.

I also think it is important to seriously reconsider that the virus is 100% fatal because most viruses are not.

But recall that humans are a very recent host for HIV. It's *not* fatal in many other primates. Other zoonotic diseases, such as rabies, also can approach 100% fatality in humans if untreated.

Additionally, the idea that it *is* 100% fatal has been challenged for quite some time now in the literature. We know there are people who have been infected for many years and don't become ill. Perhaps they never will. We also know that some mutations make people more resistant to infection in the first place. Again, this isn't a "rethinker" idea--this is typical in infectious disease epidemiology. I completely agree that more research needs to be done (and of course, it is), but this also ain't a rethinker idea (they'd prefer to choke off all funding on HIV, it seems).

Tara,
I did not mean to imply that my points were rethinker ideas just that they are areas that need further exploration. Rethinkers tend to claim that the establishment is pushing the meds on asymptomatic people and it results in liver failure. If that is the case I agree more evaluation is needed I am not suggesting that it is happening that way.

Second thanks for mentioning the rabies that is a good point that I had not considered.

"So clearly more research needs to be done but I don't think that the entire paradigm is incorrect as the rethinkers suggest"-Laura

"The few valid concerns that "rethinkers" present are also made by "orthodox" scientists and the "rethinkers" conflation of these issues with lunatic ideas about HIV not existing have probably been counterproductive."-Chris

Not all these people who you label so childlishly as "rethinkers", "deniers" and whatnot hold the same opinions amongst themselves and you all really know so but are either too lazy to type it out properly or you really have an agenda to lump them all into a category with ID, Holocaust-deniers etc. Chris, I suspect you and Tara have such an agenda. Why? Bored? Intelectually challenged? Scared of your fellow flamers? Beats me. You may heap all the shit you like but just as activists are credited with "informing" the world about all the this and that, rethinkers might equaly be credited with bringing the toxicity of these drugs to the attention of the world.
Laura, you seem a bit freightened by your own reservations about these drugs that you must post your disclaimer about how you are "...not suggesting that it is happening that way" Are your peers scaring you? afraid you might reap their wrath? Be brave; it doesn't take a rocket scientist to know that labels carrying skull and bones mean: TOXIC! MAY CAUSE DEATH! They abandonned treating HIV prophylacticly here in Switzerland because "TOO MUCH DEATH" obviously outweighs the benefits. It took them a while and lots of screeming and agonizing before they got there. And also, just because you might disagree with or question what others are saying, you shouldn't let people relabel you a "rethinker" nor be afraid of it. Be proud to be a "free thinker" with a mind of your very own. I congratulate you on your timid little foray into independent thought.

"It's common clinical practice; the risks and benefits are always balanced as much as possible."-Tara

You mean by "common clinical practice" to: not properly test drugs, unleash them on the "clients", say OOOOPS! when too many die and THEN remove them from the market? That seems to be the norm with FDA's "fast-track" approach to drug licencing. Can you recall any such drugs? How did they make it to the market in the first place? Common clinical practice?
It is also an Orthodox position that HIV-AIDS patients were gravely over-medicated with AZT. Had they conducted the early AZT trials properly (unethically?) with placebos many, many lives could have been saved or at least not cut unnecessarily short.

Another question:
"But recall that humans are a very recent host for HIV."
How old are SIV and FIV? Apparently their is a scientific way to make such determinations.
and:
How do you KNOW those subjects WEREN'T abducted by aliens?

Laura Wrote:
"...immune reconstitution syndrome can be fatal in patients with brain infections such as PML as the immune system often does severe damage to the brain when fighting off infections."

Laura, would you please contact me off line (at my e-mail address) about this. There has been some "mental effects" in certain severe cases of H5N1 infection, and I'm wondering if this might not be the cause, given what we now know about the disease's ability to incite an extreme cytokine response. I'm wondering if such a response could flood all body tissue, even brain tissue, with high levels of cytokine, even though the infection is not centered there.

Thanks!

-- Lenn

Pat, what do you expect?

Denialists baseslessly attack scientists as dishonest, greedy, bigotted fearmongers. They misinterpret scientific data and statistics, sometimes wilfully, deny the existence of research, act as though standards of treatment have not changed or improved over 20 years, etc, etc, etc. And then when we show that their science is incorrect, they go back to libelous personal attacks. They don't exactly engender respect.

Beyond all this, they threated the lives and quality of life of every patient that they attempt to convince of their comspiracy. Harsh, yes. But honest. Sadly, even in the tragic face of their own mistakes (Christine Magiore), they still hold to their medical-luddite views.

Sorry, Pat. But from my point of view, until the denialists operate honestly, they don't deserve a lot of respect. Of course, once they operate honestly, they come over to our side shortly after.

"How do you KNOW those subjects WEREN'T abducted by aliens?"

Thanks for the laugh, though. :) You are being funny, right?

How old are SIV and FIV? Apparently their is a scientific way to make such determinations.

It is possible to estimate how long ago the acestors of the current SIVs and FIVs diverged. We have the sequences and we have estimates of the evolution rate. This information can give us an approximate figure.

Of more relevance is estimating how long ago HIV diverged from SIV.

Timing the Ancestor of the HIV-1 Pandemic Strains

Duesberg is rather silent about this evidence that HIV is a new infection in humans. It certainly contradicts his claims that HIV is an old virus that has been around for millions of years.

HIV preceded AIDS by many, perhaps millions, of years.

What Duesberg does not talk about is more revealing that what he does mention.

By Chris Noble (not verified) on 11 Sep 2006 #permalink

Pat: "Be brave; it doesn't take a rocket scientist to know that labels carrying skull and bones mean: TOXIC! MAY CAUSE DEATH!"

The 'skull & crossbones' indicator is on Sigma bottles of warfarin too (if you could get them), a compound prescribed to millions of patients to prevent stroke (or elsewhere, to kill rats). You would find the same symbol on many medications sold in research bottles. Different drugs have different therapeutic windows and as others have noted (yes, even in the mainstream), the hazards of taking a medication have to be balanced against the benefits. Viruses are tough to treat. I take it that Pat would appreciate safer drugs... So would I and everyone else. The 'mainstream' *is* looking for them.

pat: [...]"They abandonned treating HIV prophylacticly here in Switzerland because "TOO MUCH DEATH" obviously outweighs the benefits."

'Too much death'? Really? Or side effects and low efficacy in certain post-exposure situations? Under which conditions was prophylaxis halted as a general response? As far as I know, antivirals are still used to prevent mother/infant HIV transmission during pregnancy and birth.

Pat, could you provide the details behind the decision in Switzerland?

By Unsympathetic reader (not verified) on 11 Sep 2006 #permalink

Lenn,
I would be happy to discuss the neurologic problems of patients with severe H5N1 but just to let you know I am not an expert I am still a student.

I am not all that familiar with H5N1 nor the neurological effects. However the immune system can do a lot of damage so I would not be surprised if it could cause brain damage. I don't see your e-mail address here but if you post it again I would be happy to talk about it. In the meantime I will see what I can find so I will be up to speed.

Laura

How many of you are old enough to remember the AIDS activists clamering for the FDA to approve SOMETHING for AIDS? Then the call was 'people are dying while you conduct your placebo trials". Prior to AZT there was quite an underground network of alternative treatments-I seem to remember even MgSO4 being touted as a 'cure'. AZT is toxic, but have you really forgotten what it was like to receive an AIDS diagnosis back then? I found out about trials for my brother-in-law that could not cure him (he was too sick then), but did improve the quality of life for the remaining time he had.

I agree with Unsympathetic that many commonly used drugs are toxic at varying levels. Not to mention that the majority of drugs can be hepatoxic because most drugs are metablized in the liver. The level at which drugs are toxic is also dependent on the individual patient which is why routing liver function testing is necessary.

I also want to mention that it is doubtful that AZT causes demetia because it does not cross the blood brain barrier at sufficient levels to do so. It is more likely that any neurologic dysfunction is caused but the virus itself or the opportunistic infections that follow.

Specifically the probencid-sensitive efflux system prevents high concentrations from making it to the brain. This is the same system that prevents penicilin from entering the brain making bacterial menigitis extremely difficult to treat.

Chris,
Thank you for the info, will dive into it.

Robster,
You make great generalisations about « denialists ». The behavior you accuse them of can be found everywhere on this planet. Yes, even Orthodox scientists, so if you want to sound convincing perhaps you can talk about specific denialists, or better still, their specific positions. because we really don't care so much about the individuals behind the message but rather the message itself. To call the « denialists » dishonest is a great blanket statement slurr many of them do not deserve. I am convinced many of them are motivated by the desire to do the right thing. Disagree with their science and leave the rest under the table. That is fine and proper.

How do you KNOW that Christine Maggiore is positive ? Two +, one - and one inconclusive test is what she apparently is. Has Elisa-Jane's HIV status been made public by the coroners office yet?

« How do you KNOW those subjects WEREN'T abducted by aliens? »

I knew you were going to giggle at that question but laughs don't really answer it. Probably why Tara is avoiding it. Try to look at it philosophically and forget the area 51's and the ET-like movies. It is a philosophical question

« How do you KNOW those subjects WEREN'T abducted by aliens? »

Honesty, since we are on the topic, would force you to only one answer. Unless of course you have scoured the infinity of space and conclusively found no travelling life forms. Have you done that ? I doubt it but you might have. I don't know what you do in your garage at night. Or is it during the day ? Do you even have a garage?

Unsymp reader
You can take all the skull and bones stuff you like. My friend is a shadow of himself after being on skull and bones for the last 11 years. The only reason the docs keep him on them permanantly was because he had a fever and weight loss in '95 ; they told him he had AIDS. He was never tested for anything else!

« could you provide the details behind the decision in Switzerland? »

The details come from him. He is the only person he knows of that has been put on meds permanantly. The dozen other HIV+ people he knows, some have not shown any symptoms and so their docs keep them off the meds. Others have thrown them out the window and he is terribly jealous that they strive without the meds. He is stuck between a rock and a hard spot because he has children. He wants off the meds because they are so dibillitating but he is also terrified. His neck is wider than his head. His upper torso so large compared to the rest that it defies gravity. His cheeks are gone and his eyes disappear under his eye brows. They have reduced his meds now so far because of the side effects that he only takes one pill a day before going to bed and he says his bed spins for the first hour or so. His doc takes him off the meds altogether for short periods of time to let his liver rest. Eventually he'll have to go off the meds altogether because of that. All this because of a fever and weight loss in '95. He tested HIV+, and they have never tested him for anything else. To me that sounds like bad medicine but what can I do? I can't go against his docs recommendations but I did beg him to get tested for other bugs. I don't know yet if he has done so. I do get the horrible feeling that they have killed a fly with a nuke bomb when it come to him. War on AIDS without much consideration for the battlefield.

« antivirals are still used to prevent mother/infant HIV transmission during pregnancy and birth. »

Yes they are but you're allowed to refuse them without fear of your doctor or social services.

« How many of you are old enough to remember the AIDS activists clamering for the FDA to approve SOMETHING for AIDS? Then the call was 'people are dying while you conduct your placebo trials »

I do vividly. They should have stuck to their guns. Unfortunatly we bowed to political pressure.

I wrote: « could you provide the details behind the decision in Switzerland? »

pat: The details come from him. He is the only person he knows of that has been put on meds permanantly. The dozen other HIV+ people he knows, some have not shown any symptoms and so their docs keep them off the meds.

OK. That is not 'prophylactic' treatment, it is treatment of an established infection. Prophylactic adminstration of anti-viral drugs is to prevent HIV from establishing infection after exposure, such as from needlesticks, assault (e.g. rape), and during pregnancy to protect the child. In the USA, it is generally at the doctor's discretion and the patient's consent as to when treatment occurs. It sounds pretty much the same in Switzerland. It is also a common policy to continue meds once an AIDS-related illness arises. Cycling on and off medicines between episodes of AIDS-related illnesses increases the odds of developing resistant forms of HIV. Hence the decision to maintain treatment as long as the patient can tolerate it.

By Unsympathetic reader (not verified) on 12 Sep 2006 #permalink

But he can't maintain regular treatment because of the insult to his liver. What do you mean by established infection? His health "problems" (fever and weight loss) are gone, long gone, so for him to stay on the treatment is propylactic.
Maybe I wasn't clear enough. He knows people that have thrown away their treatments eventhough they too were diagnosed with AIDS (not just HIV) and they are thriving. They could make that choice fairly easily though; they don't have kids to worry about so death sentences are half as scary.

"It is also a common policy to continue meds once an AIDS-related illness arises"
He has never been tested for anything else so to call his fever and weight loss "AIDS related" is merely a guessing job.

"The details come from him. He is the only person he knows of that has been put on meds permanantly."

---------------

Previously, Pat stated with authority that Switzerland had adopted a policy, and gave a specific motivation for them adopting that policy. Now we find that Pat knows of no such policy and has no reason to suggest a motivation.

Am I high on crack, or is there a pattern here?

Laura,

Sorry about that. It's lsisson AT bellsouth DOT net.

Thanks!

Tara, you may want to edit Len's email in the last post before the spambots harvest it.

change to something like: lsisson/bellsouth*net

By Unsympathetic reader (not verified) on 12 Sep 2006 #permalink

"Previously, Pat stated with authority that Switzerland had adopted a policy, and gave a specific motivation for them adopting that policy. Now we find that Pat knows of no such policy and has no reason to suggest a motivation."

I never stated such a thing in such a way. I said "here in Switzerland" quite simply. If you think I am refering to an official policy and talking "from authority" that is your fault and your ridiculous habit of "reading between the lines". You must be high on crack and I can see what pattern you function under, namely childish, insecure argumentation . Next time you have a problem understanding what I am saying, address your question directly to ME instead of the audience with things like "Pat said..." Or are you cowardly needing the backing of some cyber-sisters? Switzerland it seems has no uniformal policy when it comes to HIV treatment (maybe because there is no cure and no really good treatment) but most doctors agree amongst themselves that there really is not much they know to do which, in the case of HIV, my friend has confirmed to me since he has seen dozens of specialists and only few still believe in the "hit hard and early". Most simply shrug because they have really no answers to HIV. They basically let you choose and agree that only the patient knows what "quality of life" actually means.
To quote Pharmaboy on the 911 thread , he said quite reasonably:

"My greatest concerns are the lack of tolerance for dissenting views (the hallmark of democracy, I was taught) and the inability of us to have rationale discussions about anything (politics, science, etc.) without the debate degenerating inevitably into a name-calling screaming match."

Take that to heart and address me directly or move over and let the adults discuss here and keep your crack-induced flame jobs to yourself.

Pat,

I am sorry your friend is suffering but how do you know that he was not tested for anything else? If they drew blood to do the HIV test I would guess that they probably tested for other illnesses as well. Did he ask for the HIV test specifically?

Laura
He tested positive on a random "HIV" test as opposed to a general "blood" test. He told me that he was never tested for anything else nor has he spoken to his doctors nor they to him about anything else. This was in 1990. His fever and weight loss was in 1995. They did not re-test him nor did they look for anything else. He knows he was not tested for anything else.

Pat, you asked why deniers don't get respect, so I spoke in generalized terms. The remark about honesty comes down to the way denialists debate. That is my beef.

Christine Magiore is caught in a catch 22. Either she is HIV+ and her refusal of care and testing for her daughter directly contributed to her tragic death, or she is HIV- and is an activist taking advatage of others. Sadly, her daughter's death ended up giving proof that she and her daughter were HIV+. The cause of her daughter's death, as stated by the LA county corroner, was AIDS-related pneumonia. Orac had a good discussion of this on his old blog. The autopsy showed HIV proteins present and infection with Pneumocystis carinii.

On alien abduction... see this .

Pat, That makes more sense I was thinking he was tested solely for diagnosis of the fever and weight loss. I thought it was odd that HIV would be the primary test for such vague symptoms but considering it was 5 years after the positive test I am not as surprised about the treatment.

I personally would expect my doctor to be damn sure it was HIV related before going onto such harsh treatment which apparently did not happen for my friend. It appears the thinking his docs used was:
You tested + 5 years ago and now you have fever and weight loss therefor it must be AIDS. By his own testimony this is exactly what happened. Am I unreasonably suspicious about such logic?

"If you think I am refering to an official policy and talking "from authority" that is your fault and your ridiculous habit of "reading between the lines"."

----------------

Pat Said:

"They abandonned treating HIV prophylacticly here in Switzerland because "TOO MUCH DEATH" obviously outweighs the benefits."

Clearly stating that in Switzerland, some specific (although possibly informal) group abandoned a previous policy in favor of a new policy, and that the reason they did so was that the previous policy caused too much death.

Then Pat said: "The details come from him. He is the only person he knows of that has been put on meds permanantly,"

This post shows no knowledge that any such group existed, who "they" might be, or, if they existed, that they had ever had a policy, that if they existed and had a policy that they had changed a policy, and even if they existed and had a policy which they changed, Pat would have no way of knowing what their motive was.

So, Pat, your original statement:"They abandonned treating HIV prophylacticly here in Switzerland because "TOO MUCH DEATH" obviously outweighs the benefits" was just something that you made up, or that someone else made up and you repeated.

And after you have been called on all that, and after you were corrected about what prophylactic treatment is, we learn that your friend has spoken to dozens of specialists, few of whom "still" believe in the hit-hard-hit-early theory," Of course, your friend wasn't hit hard and early, he was started his Meds 5 years after being tested, after the onset of symptoms. So, "they" (if "they" refers to your friends doctor(s)?) clearly abandoned this policy previous to 1990 sometime, if they ever had it in the first place.

So your original statement gets knocked down to: "agressive treatment with these drugs hasn't been common medical practice in Switzerland--for patients with no symptoms--in well over a decade, possibly because of negative side effects", but since that is true of a lot of drugs for a lot of diseases, it doesn't have NEARLY as much kick, now does it? I mean, I don't go in for preventative Chemo, do I? I don't take tylenol daily to prevent headaches, either, that would be bad for my liver.

As for third personing you, sorry if it offends. I tend to do that when I think someone has clearly slipped a widget and I'm going to say so. I do this because it gives you an opportunity not to respond to me, allowing you to treat my posts as commentary, If you igore a post that is not directed to you, you can't be accused of refusing to respond to criticism. But if it bothers you, sure, whatever.

pat: "But he can't maintain regular treatment because of the insult to his liver. What do you mean by established infection? His health "problems" (fever and weight loss) are gone, long gone, so for him to stay on the treatment is propylactic."

I'm sorry to hear about his problems.

There is an old saying: "The difference between herpes and love is that herpes is forever." Unfortunately for most, HIV is too. It doesn't go away but it can be knocked down. The drugs are treating an active, continuous infection. The problem is that treating 'episodes' as they occur and then stopping treatment with antivirals allows resistance to arise in the pool of HIV at which point the drugs become ineffective.

Doctors may vary in the aggressiveness of treatment. Some would start medication before a clinical condition arises while others wait until the first signs of problems. Treatment regimes are re-evaluated and tweaked over time. However, once begun, treatment typically does not stop. Unfortunately, it distills down to statistics. Some people can halt drugs or go without them for long periods (or indefinitely). Others decline rapidly. Researchers are trying to understand the differences in responses. Hopefully, that information will help predict how to best treat each case (akin to personalized medicine). But for now, it seems a good bet in most cases to continue treatment with as few interruptions as possible. If your friend has questions I do hope he corners one of his doctors and asks to have the treatment goals and expectations explained to him.

By Unsympathetic reader (not verified) on 12 Sep 2006 #permalink

Pat,

I would want a Dr. to be sure about treatment as well, but it is not always so cut and dry especially with vague symptoms. You also said he went to many specialists and they didn't look at anything else? They all just said its AIDS? Now I am from the U.S. and from my experience if you have insurance they will give you every test under the sun if you ask and often times if you don't. I can't speak for the health care system in Switzerland so I don't know if it is the same way there but it brings me to one area I strongly agree with Michael on which is to be proactive. So many people go to the doctor and leave not having a clue what is going on I think it is essential to demand to know what is going on. Patients must take some responsibility for their health because a doctor can only do so much and a lot of diagnosis comes from the patients input. I realize it can be intimidating but I feel it is really important to get the highest standard of care. From your description he didn't ask about anything else so I can't really make an opinion on what happened or if the doctors jumped the gun on treatment.

Regardless of that I do hope he finds a tolerable solution so he can feel healthy and be their for his children.

So do I laura,
I can only imagine both him and his doctor somehow become spell bound by the positive result and got tunnel vision as to his general health. I personally hope he does corner his physicians but I am a bit loathe to get too involved in his health decisions
This...
http://scholar.google.com/scholar?hl=en&lr=&c2coff=1&q=cache:KVSBZod2o0…
...is pretty much what I am saying about my friend's dilema. He was given a death sentence and it is now being replaced by a man made one. If his chances of developing AIDS and dying are already that high, why on earth would the treatment be as deadly. Aren't his chances of dying somehow now bigger? His chances of dying of AIDS according to the literature are anywhere between 50-100% it seems. Now sprinkle on top of these odds drugs with these grade 4 events, it stands to reason that either his odds of dying have increased or the cause of his possible death has merely been re-assigned to a "physician-prescribed" death. It is refered to as an AIDS-related complication I believe. I really hate to read about the "life saving" effects of these drugs. It appears simply not true and totally misleading. "mind-boggling" effects would be more appropriate.
to quote an infamous blogger:
"with medication like this, who needs a desease?"

"Regardless of that I do hope he finds a tolerable solution so he can feel healthy and be their for his children"

He's down to a last ditch treatment effort consisting of only one pill a day. After that the only tolerable thing would be no meds at all. No one not even himself is worried about dying of AIDS at this point seing there's no sign of desease progression (his viral load is undetectable he says) but the effects of the drugs are all over his body and this "only" 10 years into the treatment.

Finding HIV protein in Elisa-Janes brain. Does that mean she was tested for HIV antibodies? Is it the same thing?

And I really don't care about deconstructing why people who believe in alien abduction may be laughable. My question was straight forward and unfortunatly answered by hyperlink.

HIV proteins were found with HIV antibodies. Not a western blot, but looking at slices of parafin embedded brain tissue under microscope. Someone else can explain the technique better than I, but all appropriate controls were used.

On aliens, I do think that it is very likely that life does exist elsewhere in the universe, just based on probability alone. But if they have the technology to travel between stars, abducting humans to stick things in their butts would probably not be at the top of their to-do list. There are quite a few more reasonable explanations, which were detailed at the link.

"It is refered to as an AIDS-related complication I believe. I really hate to read about the "life saving" effects of these drugs."

------------------

Well, Pat, based on what information I've been able to gather, anti-viral therapy does extend life, and even improve quality of life, for many patients. I'm sorry that you hate to read about that, but it seems to be true.

If I read the studies right, the average untreated patient sees about 2 years after onset of symptoms. So, it may be true that these drugs are ruining your friends health, or, it may be true that his kids actually got to get to know their dad, thanks to these drugs. You look at it any way you want.

You portray your friend as being a slave to his doctor, unable to speak up for himself or bring up concerns and issues, or ask for tests... but at the same time you tell us that he has seen at least 24 specialists since 1990. This is inconsistent, so you'll pardom me if I don't accept that you are a reliable source on either his condition, prognosis, intimate conversations with his physician, or medical history.

I don't doubt that you are genuinely concerned, genuinely caring, and genuinely want what is best for your friend. But I also think that you are buying into some really bad information and some sloppy thinking about hiv/AIDS, and that your view of your friends situation is skewed by that.

I wandered onto this thread but am amazed to see that some people are arguing that antivirals are worse than the disease. If anyone wishes to see what HIV can do to a population without medications or medical care except what nature provides, many countries in Africa, such as DRC, provide stark examplars.
Instead of wasting time on such silliness, we should be pushing the World Health Organization and other organizations to lobby pharmaceutical companies to loosen their international patents on antivirals so generics could be available in those areas of the Third World where the need is so great. Failing that, donating steeply discounted pharmaceuticals, (I know that a few, few samples are grudgingly donated) would be another possible solution. However, our current Administration has the point of view that abstinence is the answer to the HIV pandemic in Africa.

For some people the treatment is worse than the disease. The problem is, that fact may not apply to many and it is often far from clear who falls into which category. So we place bets based on the knowledge we have.

Part of the issue (I think) influencing some of the dissenters is fear, uncertainty, and a sense of helplessness. If you've got someone you know who is suffering from chronic pain or disease like cancer and you see them having horrible trouble with the treatment, it is perfectly natural to worry whether they are doing the right thing by proceeding with treatment. People will naturally want to look for a way out or something to blame that they can personally affect, regardless of ultimate utility or correctness. AIDS is particularly difficult because someone can appear largely asymptomatic for long periods between episodes of decline. 'Do they really need to take these medicines that are hard on their systems when they look fine to me?' 'Can't they just provide treatment as necessary instead of all the time?' These 'what if?' doubts are hard to live with, especially if you are not terribly familiar with disease progression or do not remember what it was like in the mid-1980's. It is easy to blame treatment and doctors when the options are not well understood. You can't do anything with the HIV inside someone, that is out of your hands; may as well go after something you can touch. Doing something, taking any action of some sort frequently makes things at least feel better while you're doing them...

Some people will die earlier because of treatment. Others will survive longer thanks to treatments. Some will find the drugs intolerable while others will manage. Unfortunately, it is largely a numbers game. We cannot necessarily determine what the optimum treatment is for a single person. At best we can determine which course provides the greatest probability of long term survival. This fact is understandably hard to accept when it involves some people standing right in front of you. A single person is not a statistic and having to watch someone suffering hurts.

**********
What particularly bothers me about AIDS is that all that misery could have been prevented. It only takes rational thought to prevent infection.

By Unsympathetic reader (not verified) on 13 Sep 2006 #permalink

Do "rethinkers" ever have a point?

Yes, very often. Here's one.

HIV Vaccination

World Aids Day. Once again, on this remarkable Friday, December 01, 2006, the words Aids, HIV, condom, vaccine, infection, etc., are smeared all over the place and I have not seen one single front page without at least three of these words doing some fat-capitals-solely rubbing in. In French, admittedly, but what difference does that make?
The rubbing-in, and particularly the vaccine part, made me think of big shot Louis Pasteur, who's crooked research made the HIV success story possible in the first place, exactly one century before the AIDS shit hit the fan.

From some local newspaper distributed in Marseille & Region I learned that volunteers are still being asked to join the party and get a shot of an experimental vaccine supposed to efficiently protect treated subjects against killer HIV. And me, reading, knowing it's basically nonsense and exclusively that, absolutely unable to stop the brain from slipping into it's stand-alone mode and start crawling through the same shit all over again.

What are HIV-tests supposed to detect? Antibodies against HIV. Antibodies created by what or whom in the first place? By HIV. What is the basic idea behind HIV-vaccine? Create antibodies against HIV. Now if HIV itself is it's own vaccine because it creates antibodies people can live decades with, why vaccinate?
Why are antibodies important? They protect against infection. When is a person best protected against TBC? When he has antibodies against TBC Bacilli. When is a person best protected against AIDS? When he has no antibodies against HIV. Because if he does have antibodies, he's HIV+. So then, if the mere action of vaccinating a person will make that person HIV+, why vaccinate?

Man, it's just some helpless plowing the mud once you've started and there's not one single intelligent reflection that will help you find an answer to the question: "Why vaccinate?" Five seconds, ten minutes or an hour and a half, it doesn't matter, you're stuck and you'd better listen to some music or you'll go crazy before the day is over.

That's why it's called AIDS. The Acquired Intelligence Deficiency Syndrome. The intelligence deficiency is acquired because the syndrome can't keep standing up for one second without. Think and the whole thing falls apart. If you're strong enough to search for your own answer to the question, that is. If not, if you cannot admit that the search for a vaccine is stupid and only that, and if you stubbornly keep trying to make the vaccination approach fit, you can only go on roaming around helplessly until you fall apart yourself.

JS
_________________________

http://www.nightsofarmour.com

"I wandered onto this thread but am amazed to see that some people are arguing that antivirals are worse than the disease. If anyone wishes to see what HIV can do to a population without medications or medical care except what nature provides, many countries in Africa, such as DRC, provide stark examplars. "

It is obvious that you have only recently wandered into the debate. Uganda was once held up as the perfect proof of HIV/AIDS leathality. Now it is hailed as a success story for having reduced the number of HIV+ people to single digit percentages. 10 years ago we were supposed to believe that half the country was doomed; now it is mere fractions. Did the 50+% infected back then die off? No. The numbers were revised downward because...ooops, we had it all wrong but this doesn't stop the "professional activists without a cause" from parading it as living proof for the prevention effort's success. Where did all the AIDS deaths go? They can't tell you that because it would blow the lid off their "non-cause" namely that these supposed HIV victims survived just nicely without medication. No, the country is thriving (at least with respect to population growth) and HIV/AIDS miserably failed to make any difference in the country's admittedly high mortality rate.
It is the miserable living conditions in Africa that are causing all those deaths; no need for a new virus to explain it. And now we are to give them highly toxic meds (don't even bother denying that one). We're only adding to the golden asphalting that is sending this wreatched continent down to hell. First we did it out of greed and rasist colonialism and today we do it out of misguided, guilt ridden love. We can simply not tell our arses from a hole in the African ground. Don't take it from me; go and spy with your own critical eye.

PS: DRC is just another country in a long list that is engulfed in bloody and endless civil war which makes any kind of minimally decent existance a furtive dream.

I wonder how many people here would undergo HV vaccine trials. I certainly woudln't offer my body to scientific tinkering at least as long as it lived. You would have to be MAD to let your boddy be a tested ground for unproven vaccines.

Mad or altruistic. Almost every medicine currently on the market has been tested on human volunteers.

I would consider volunteering. You can't get AIDs from ANY of the current vaccines being developed. No way no how. The bigger issue is whether I would now come up HIV+ in the various antibody tests used for HIV. That might be a little difficult to explain to the spouse.

D

Too true, DDS. I've been involved in a smallpox vaccine and a C. difficile safety trials. Well worth it. The possibility that you could test positive would certainly mess with insurance appraisals.

"Mad or altruistic. Almost every medicine currently on the market has been tested on human volunteers."

To let the fools rush in is perhaps a strategy. Present company excepted.

" The bigger issue is whether I would now come up HIV+ in the various antibody tests used for HIV. That might be a little difficult to explain to the spouse."

"The possibility that you could test positive would certainly mess with insurance appraisals."

How would you explain this one to your spouse or your insurance company? Good questions. A relative of mine recieved a hep B shot years back and in Canada he is considered immunised yet in Switzerland he is considered infected. What does he go by and who does he tell what?

Eenie meenie meini mo, catch a...

Coming up HIV positive because of a vaccine is only initially a problem. Every antibody test is confirmed by an RNA test, at least in the USA. My guess is that most infectious disease testing will be DNA or RNA based eventually. So, it is unlikely to be a problem.

Again, altruism/human experimentation (here I make a distinction between Tuskegee and Mengele human experimentation) has always played a role in medicine from the very earliest days.

If you choose not to help, fine. But, don't denigrate or those who do help. They are not fools. Well, except maybe for the college students doing anything for some extra beer money.

D

"You would have to be MAD to let your boddy be a tested ground for unproven vaccines."

=============

Or ambitious. Robert Rodriguez shot 'El Mariachi' with money he got for being a test subject in a controlled trial.

Anyone who proposes human experimentation should also be the first volunteer. How many here have been subjected to HIV trial vaccines? Fauci is calling for 30 million HIV vaccine volunteers. Has he ever bothered to volunteer? I am really curious to know where these volunteers are recruited; from the top or from the bottom of the human pile?

"Or ambitious. Robert Rodriguez shot 'El Mariachi' with money he got for being a test subject in a controlled trial"

Ambition can be a mad fool's motivation I suppose.

I am not sure if Tony has volunteered yet. But, I am sure he would.

Depending on the vaccine being tested, they would take any healthy, HIV negative volunteer. See for instance (http://www.seattlevaccines.org/volunteer_opportunities.html) I would volunteer but since I don't live near Seattle not for this study.

I am neither mad nor a fool. Just doing my duty for society, like voting, jury duty, picking up random litter left by other selfish folks, etc. I accept that every ecology has parasites that benefit from the actions of more altruistic members but, I do it nonetheless.

D

PS. I have volunteered for other human studies. Just not an AIDs vaccine one yet.

"Robert Rodriguez shot 'El Mariachi' with money he got for being a test subject in a controlled trial"

I had to look this up. I assumed that shot meant with a gun. It really meant with a camera.

D

"I had to look this up. I assumed that shot meant with a gun. It really meant with a camera."

lol

"I accept that every ecology has parasites that benefit from the actions of more altruistic members but, I do it nonetheless."

I won't take offense at this :)

"Has he ever bothered to volunteer?"

Probably, but he likely cannot be included in the trial because he is not part of the blinded study. Most vaccine researchers that I work with all recieve the vaccine before the trial begins.

About fools and parasites:

Any one who cares enough about the "human herd" would never allow any kind of experimentation on the whole of it. The whole idea behind experimentation is to pick a very small sample so as to protect the rest of the herd from calamity, wheather intentional or accidental. The self sacrifice of these human guineapigs may be viewed in an altruistic light no doubt but the rest may not be viewed as parasitic. Parasitic would be to allow large scale human testing which in turn may cause irreversible harm to the health of the human species. Thats what parasites do, they feed off and at times threaten our existance. Our health care system and the assiciated science research CAN become parasitic. Fauci's call for 30 million vaccine guineapigs just smacks of dangerous insanity, a bit like the geek next door who experiments on his new TNT propulsion rocket engine. You simply can't stand by and watch him threaten the neighborhood. A bullet to his head could be viewed as a desperate act of heroism. Causing a cranial fissure with a blunt object may suffice though.

Wink, wink, nudge, nudge. Who needs to chill?

"You. Your above post could be viewed as a call for murder."

Only to the complete illiterate and humourless.

"Only to the complete illiterate and humourless."

------------

Wow... that was supposed to be a joke? Possibly, if you had dropped the last sentence, and maybe added a sentence that clarified the nature of the joke a bit... I don't know, I just don't find killing people funny.

I guess I'm illiterate and humorless.

"I guess I'm illiterate and humorless."

I suppose so.

Are you two like attached twins?

Ann Coulter wishes the death of REAL people but to get all choked up by the death of a fictional character is a wee bit sensitive I would say. Who's death would I be advocating anyway?

Chill.

Educated guess but a real streatch.

Chill.

Whatever, Pat. It still came off as unhinged and threatening. A massive vaccine clinical trial would only be undertaken after basic safety and efficacy trials had been completed, and I would be happy to join in such a trial, after a careful reading of the relevent literature, although I am in an extremely low risk group.

"and I would be happy to join in such a trial, after a careful reading of the relevent literature, although I am in an extremely low risk group."

How many volonteers get the opportunity to carefully review the literature? You can and scientists can so go ahead and join, I think that's great.