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Re: No harm ever reported, no lack of success either - EDIT
happyhealthygal Views: 6,502
Published: 15 years ago
This is a reply to # 1,188,578

Re: No harm ever reported, no lack of success either - EDIT

"You are quite right - you have no way of knowing whether OPC herbal cancer cure works or not.

My point is that NOBODY knows the results of the actual users, whom nobody has bothered to follow up on! Marc has only followed up on ONE of them! And the only info he had to report is that he gave a testimonial that he was feeling well, nothing on viral load, CD4 count, etc. Just that he's feeling well. Nothing on the hundreds of others. The difference is that I freely admit that I do not know whether the product works (i.e. I am HONEST when I do not know something!). Other claim to know that it works, and claim that it works 100% of the time. This is unknowable, and any claims to the contrary are either mistakes, delusions, or lies (I won't presume to know which). I would not have any problem if you said "I believe it works", "it is my intuition that it works" or "I have faith in its ability to work". What I DO have a problem with is the misleading claim that it has been proven to work 100% of the time and has never failed. The only way it is possible to know whether something has ever failed is if someone actually tracks every instance in which the drug has been taken: nobody has done this! You KNOW that nobody has done this because Mr. Swanepoel has told you this! When you make misleading claims, you lose credibility. There is an argument to be made for more research into Oleander as an adjunct treatment during the asymptomatic phase of HIV, or possibly for use in the third world, and/or for research into Sutherlandia as an alternative to ritanovir as a potent CYP450 3A4 inhibitor with potential antiviral effects (I'm not sure that they are WINNING arguments. There are so many other compounds that I find more exciting as avenues of future research than either of these, but I would still be willing to make the argument). It is unfortunate that Mr. Swanepoel has no credibility on these matters, and that you quickly seem to be pissing away yours.

"Especially if you remain determined to blind yourself to the results of the actual users and the participants in the trial."

"Blind myself?" This strikes me as empty rhetoric. HOW am I blinding myself? I have told you my specific problems with the study, and you engage in rhetoric of distraction and repetition ("it does work, it really does, I'm an honest man, Mr. Swanepoel's a humanitarian, this stuff has saved lives" without actually addressing those concerns!)
WHAT actual users? As I have said before, all we have here are the words of two people: you and Mr. Swanepoel. You have not met a single person who has actually taken the substance for HIV; you are relying entirely upon the credibility of Mr. Swanepoel. I agree with you on one thing - this all comes down to credibility. You claim that Mr. Swanepoel is a humanitarian, an honest man, and a good scientist. I don't know about the humanitarian part (and it's really not my concern. Good intentions do not make lousy research good or incorrect inferences suddenly become correct), or about his moral character (which I'm not here to debate), but the research is dishonest and bad science. I am loathe to accept the claims of a man who misrepresents evidence (see below): if he misrepresents evidence from other studies, or fabricates statistics that do not exist, why should I believe that he is telling the truth on any other matter? Why should I believe that a man who is not even capable of finding the primary source for a clinical trial, looking it up, seeing what it says, and accurately reporting the data, rather than simply parroting the misrepresentations of others, has the intellectual, moral, organizational, and executive capacity to run his own clinical trial?
What am I "blinding" myself to? I believe that I have read Mr. Swanepoel's "dissertation" (I put the term in quotation marks because it was obviously not written in order to receive a doctoral degree at any accredited university in the US. Another question: why should I put my faith in the honesty of a man who represents himself as having a 'PhD' when what he actually has is a worthless certificate from an unaccredited correspondence school? Or trust a man who claims to have taken advanced statistics classes but does not know what the t-test is (or claims that it is unreliable when used on small samples!!! This is equivalent, to me, to not knowing what it is!)? Incidentally, I don't have a problem with those who are less educated, and they, like everyone else, should be free to pursue their dreams. What offends me is misrepresentation. I'm not saying that such programs are worthless (What really matters is what the graduates learn, and I imagine that this would vary from program to program. However, one thing that is clear from Mr. Swanepoel's dissertation is that he did NOT learn how to conduct research. This indicates that whatever else this unaccredited "doctoral program" offers, his accreditations are in no way equivalent to what one would receive at any legitimate, accredited PhD program in the United States. He can sell his herbs, but I consider it misrepresentation for him to call himself a doctor or a PhD. Some prefer to get advice from those with legitimate MDs or PhDs, some do not, everybody is free to seek advice wherever they choose. But nobody should misrepresent their qualifications). I am offended by those who claim to have expertise that they do not. I am offended by promises that go beyond which they can possibly deliver.

"Ah well, pick it apart and doubt however you want. Several hundreds of users over the past four years, every one of them alive and well and with reversed HIV/AIDS symptoms."

Based on what? Nobody knows this! Mr. Swanepoel doesn't claim to know this, and you don't even know anyone who's taken it! These things are poorly regulated in South Africa (as in the US) - nobody even keeps track of who takes what and then what happens to them! Nobody knows whether these people or alive and well with reversed symptoms or whether they dropped dead immediately! If you spoke only about matters about which you had some basis of knowledge, you might have some credibility (e.g. "I know no one who has taken this drug, but a man who I met over the internet and believe to be honest has given the drug to people, and though he has not systematically followed up with them, those who have bothered to find him have told him that they are feeling better. Also, he claims to have heard many positive success stories").

"So successful in actual use and the trial that a pharmaceutical manufacturing company jumped in and agreed to produce an initial batch of 50,000 bottles and 10,000 bottles minimum per month after that."

Yes, and as you always point out, pharmaceutical companies NEVER create products based on profit potential rather than healing potential, now do they? Why would this be any different in the completely unregulated South African herbal market?

"However, I am sure that the reason the Ministry of Health of South Africa recommends it for HIV and the reason the government of South Africa honored it nationally with an official postage stamp in its honor is NOT because it is ineffective."

You're not serious, are you? Manto Tshabalala-Msimang? The beetroots, potato, and garlic lady who claims that the remedies she advocates should not be subjected to scientific research protocols (even though, as Minister of Health for a nation with a highly developed economy she could fund whatever studies she wanted to)?! The convicted thief and alcoholic? The same lady who said that AIDS "could also be a God-given opportunity for moral and spiritual growth, a time to review our assumptions about sin and morality"? Oh yes, why would she make a misstatement (except that she's done it before! Take a look at her history - it's plagued by scandal! If any other country thinks following down South Africa's path is a great idea, all they have to do is look at how it's been working for them! The tragedy is that as its leaders have been buffooning around, its people have been suffering (the real tragedy is that so much of this could have been prevented before it reached the tipping point, if Mbeki's judgment had not been clouded by ideology).

"Whether you are satisfied or not, there are hundreds if not thousands of people and family members who are delighted."

That seems to be speculation. I don't know how you can possibly know this, since you don't know anybody who has actually taken the drug, and all you are relying on is Mr. Swanepoel's very shaky word.

"Let me get this straight - though quoted in numerous publications, studies and surveys do not exist because YOU cannot find them? Pffft!"

YES! Exactly! Ten thousand people can say "the November 2002 issue of JAMA says X, Y, Z", and if I go to the November, 2002 issue of JAMA, and it does NOT say "X, Y, Z", guess what? They're all wrong!!! And, incidentally, in the case we're talking about (the chemotherapy profits issue), we're not talking about "numerous publications, studies, and surveys", we're talking about numerous websites, internet forums, and pieces of opinion journalism! The issue at hand is whether the survey itself actually exists or whether it was fabricated once in a well-known but poorly sourced book, and then simply repeated a zillion times (hence why when you google it, you get a lot of hits, but none from the primary source - i.e. JAMA). If it exists, there should be a reference in the original book by Henderson - what is it? I have access to every paper copy of JAMA going back to the late 19th century and electronic access to their full-article database - this survey does not exist! Somebody made it up! Feel free to hand me a reference for it, or look for it yourself in JAMA. I searched the entire JAMA article database for "oncologist chemotherapy" and each of the dollar amounts involved, with and without commas, with and without dollar signs. There is no such article. If you can provide me with a reference for it, I will be more than happy to find it, see if it says what you claim, and you will have my apologies. But based on the amount of intellectual dishonesty I have seen from the "alternative medicine community", this would be far from the first time that someone had fabricated a statistic, claimed a source that did not exist, and hundreds of others parroted it. What IS shocking about it is that nobody checks up on these things before putting their own credibility on the line. Every time you say something, that is YOUR credibility. If it turns out to be false, that reflects on YOUR credibility. When you quote studies that do not exist, that says something very poor about your ability to present reliable, correct information to your readers. If you represent yourself as as expert (or an intelligent, trustworthy person who is able to see through BS) on these matters, or someone whom people can turn to for advice, then people are relying on you to adequately screen information. You have a moral responsibility to verify that everything you tell people is correct. It would seem (based on the number of people who unthinkingly parrot or plagiarize such materials) that very few people are going to check up on such information themselves: it is therefore your job to do it for them. Every time a secondary source refers to "a study", it is your job, as a responsible, honest human being, to find that study and see what it actually says. It may not exist! Or it may say something completely different from what the secondary source claims! For example, anyone who quoted (or plagiarized) the literature review in Mr. Swanepoel's "dissertation" would be passing on misinformation.
It is beyond absurd to claim that if enough people repeat something, it must be true. If this were the case, then the sun would revolve around the earth (since this was repeated and published many times in the history of mankind). JAMA is not some super-secret publication where a survey may be published and it may be impossible to locate it ever again. It's one of the journals of record for the medical establishment! You can locate anything that's been published in JAMA!

"The more you post here, the more you strike me as a mainstream contrarian."

I don't even know what that MEANS.
People in "the mainstream" are those who represent majority viewpoints or generally accepted methods, styles, ideas, etc. "Contrarian" is usually used to mean one who takes a position CONTRARY to majority viewpoints or prevailing wisdom (i.e. opposed to the mainstream). It occasionally refers to one who consistently takes contrary positions, regardless of whether he believes in them, in a sort of 'devil's advocate' or gadfly role. I have no idea what you're trying to say here. My objections here are legitimate, and I would urge to consider them seriously (i.e. to look at yourself) rather than attempt to deride me.

I hold mainstream and alternative therapies to the same level of scrutiny. Mainstream remedies are rarely dicussed on this forum, so you have really not gotten to hear my opinions on those (if you are interested, all you have to do is ask. Pick an HIV drug, any HIV drug, if you want to hear an earful of opinions! I daresay I know more about the potential risks and toxicities of the various HIV drugs than anybody else on this site, but they rarely come up. When they do, it is usually to correct other people's mistakes. I don't believe I've ever actually given my opinion about HIV medications. I've corrected other people's mistakes - clearly false statements like "AZT is so toxic it kills more people than AIDS does" deserve to be corrected. If people take that as support for AZT, they are free to do so. However, that is their assumption, and people make assumptions at their own risks - the risk that they are wrong. If they want MY opinion on AZT (which is, after all, the only thing I am responsible for. I am not responsible for the fact that other people make false statements and the data quite clearly proves them wrong), all they have to do is ask!).

I would actually like to know how you define "alternative" and "mainstream" because I think people could come up with very different definitions. Depending on the definition, I also don't think it would be very black-and-white.

"In case you have not noticed, mainstream medicine, including retro virals,"

I also have no clue what you mean by "retro virals". HIV is a retrovirus. If you aren't familiar with the term, that means that it is an RNA virus (as are many other viruses, such as influenza, rabies, polio, measles, coronaviruses, rhinoviruses...) that can reverse transcribe, using a viral enzyme called reverse transcriiptase, to make DNA copies of its genetic material. "Viral" is an adjective; "retro viral" is too, but in this context, since it is not modifying anything, I have no idea what you are referring too. "Virals" is not a word, neither is "retro virals". If you are not interesting in talking about a retrovirus, then you are not interested in talking about HIV, and I would suggest that you therefore not frequent the HIV forum.

"I tell you what, even though you seem to have problems locating the studies that some very respected people such as Dr's Ralph Moss, Lorraine Day and Bill Henderson have used in their articles and books",

I have access to extraordinary libraries and databases. Give me the references! I've never really cared how respected people are if they fabricate data (regardless of whether they're "mainstream", "alternative", or "fringe", intellectual dishonesty is beyond unacceptable in my book). In fact, in my eyes, that's pretty good evidence that they SHOULDN'T be respected! If I were you, I would go out and try to find those studies. When YOU realize that they don't exist (I see no reason that you should take my word for it that they don't, just like I see no reason that you should take their word for it that they do. You seem to have been lulled into complacency by "big names", assuming that just because someone is famous and published and agrees with your point of view, that they couldn't be capable of data-fudging or outright fabrication. I think you need to open your eyes and start doing your own research if you're going to hold yourself out as a source of unbiased information). I've found that respectable (as opposed to merely respected) authors nearly always give references for the studies that they cite. In fact, the most valuable thing about a book on an esoteric topic often IS the references. I would very rarely trust a book that claimed to be authoritative on a subject if it were not scrupulously sourced. You seem so good at holding mainstream medicine to strict scrutiny, while holding those who agree with you to NONE. I actually try to hold everybody to the same standards. If there are some hidden assumptions that explain why you hold mainstream and alternative scientists to differing standards, I think the rest of us deserve to hear them. Thus far, it seems like the bias is driven by politics rather than science.
I'm also not so sure that the three people you've listed are particularly "respected" by people who've actually evaluated their claims on the merits (rather than on the politics).

"maybe this task will be easier for you."

Why would I be taking orders from you? The difficulty of the previous task was not related to my incompetence (you could prove me wrong on that point by actually locating a JAMA study that matches your quotation), but rather to the fact that it was an impossible task: I cannot find an article that does not exist any more than I can locate a blibbering humdinger.

"Well over 1,000 people have taken OPC herbal cancer cure for HIV/AIDS. Find just ONE that is has not been successful for."

Please do not use such lame rhetorical strategies with me - this is called "shifting the burden of proof", and in this case, it is not legitimate. When you are claiming that you have a treatment that is 100% effective for HIV, the burden is on YOU to prove that fact; the burden is not on anyone else to DISPROVE it (if I claim that sticking a hot poker in your eye will make you lose weight, it is MY burden to prove this fact, not YOUR burden to stick the hot poker in the eye and disprove it). My point is that you are making impossible claims: you are making claims that is beyond your basis of knowledge. You do not know a single person who has taken the drug, and NOBODY has followed up on the people who have taken this drug. If 1000 people have actually taken it, Mr. Swanepoel has short term data on .1% of them and long-term data on NONE of them! He does not even claim to have anecdotal data on even a significant minority of them! He hears from a few of them from time-to-time, when they feel like calling! I have made no mistatements about OPC herbal cancer cure Sutherlandia, so I'm not sure why I should be challenged to find anything. YOU are the one who has been making claims that you have inadequate support for. As you perfectly well know (or should know), I could not get the names of those who have taken OPC even if I wanted to. The only people who have access to those names are the people who sold them the product - yet another reason why the burden is on them to prove their claims regarding efficacy and lack of toxicity. I do not even know whether 1000 people HAVE taken this product, or whether this is another DQ claim that will turn out to have been fabricated.

"If that is beyond you, then here is a second option. Since there has not one single report of harm from OPC, find someone who has HIV/AIDS symptoms being aggressively presented, get them a couple of bottles of OPC - then you do all the scientific tests and report back to us."

Sorry - I'm not about to sacrifice the health of one of my friends or acquaintances just to test your lovechild. Just so you know, no ethical scientist in the United States will be giving this compound alone to somebody who is presenting with aggressive symptoms, unless perhaps they would refuse all other treatments that are known to be effective (and I've never seen a clinical trial that recruited this population, although it's possible that one has taken place). Also, I am not a doctor: I do not treat patients. I'll give friends advice, but I do not give drugs or bottles of anything to anyone. If a human being came to me with aggressive symptoms of anything, I would do the same thing every single time: get the phone number of the most competent doctor I could find and take them there pronto. Ordering a bottle of OPC would not even be on the list. I feel morally obligated to ensure that any of my acquiantances receive the most effective treatment available based on current knowledge, and for this reason, sending them off with a bottle of OPC would be unethical. There are cases in which it could be tested. You could do a trial in highly treatment-experienced patients with multi-drug-resistant virus who do not have any other options, with whatever OBT they could muster. You could do a study in asymptomatic patients to see whether it has an effect on disease progression. Or, as Mr. Swanepoel as so clearly demonstrated to us (even though he's a bad example, since he's not a scientist; preferably, you want a scientist, or at the very least, a non-scientist with intact credibility conducting your trial), you can perform all sorts of unethical trials in developing countries! You can do a legal, sanctioned, placebo-controlled clincal trial in South Africa testing whatever you want in people with CD4 counts > 200, since they would not be entitled to publicly funded ART anyway. There are other ways to test that I won't get into, but what you suggest is unethical, and I wouldn't even do it as a private citizen.

Again, the burden of proof is on those MAKING claims, not those who claim to know nothing about the truth of the matter but merely pointing out that the ones making claims are misrepresenting their evidence. I'm going to try to explain this as clearly as possible: I am NOT making claims about whether OPC works or doesn't work. Neither I, nor anybody else, has any solid evidence on that point. I would never say "it doesn't work" just like I would never say "it does work". I am saying that YOU have NO PROOF FOR WHAT YOU ARE SAYING ABOUT IT! This is separate from whether it works or not (which nobody knows at this point based on the available evidence). This is an argument about your credibility. Saying that "it has been proved to work 100% of the time, without fail, until someone proves to me that it doesn't" is as absurd as saying "Prove that God does not exist. Until you do that, the world can be 100% certain that he absolutely does" or "I have heard no stories of people who have not recovered from SLE when they drank their own urine. Urine drinking is 100% effective, without fail, for SLE, until someone else shows that it isn't". If you don't see the logical fallacy here, then you are probably not someone who anyone should be coming to for well-reasoned, objective advice (as opposed to polemic. I'll admit that you're good with the polemics. But if that's all you offer, you really can't complain that those who are looking for unbiased sources of information on Oleander or other herbal remedies read a few of your pages and wrinkle their noses because they're looking for well-sourced, reliable information rather than political diatribes).

For some reason, you seem to understand the whole "burden of proof" concept in other contexts. You only seem to not understand this when it is applied the treatments you yourself promote.

There is not a single credible report on ANYTHING regarding OPC! Nobody is collecting data on it! We really wouldn't know if people were dropping dead from it, because neither Swanepoel nor the pharmaceutical company seems at all interested in looking into the long-term effects! There ARE, however, plenty of reports of harm from the ingredients in OPC, as I've mentioned before - if you can't find them, just let me know and I'll dig them up again.

I am really not your lapdog. Since Swanepoel and his pharmaceutical company are making plenty of money off of this drug, it really is their job to be collecting data on its efficacy and toxicity, not mine. If you struck me as a credible person who was making an honest attempt to provide valuable information, I might be willing to help you. But I'm pretty sure that any research I would do (which would not be a clinical trial, by the way. I do not do work on humans) for you would just be twisted to serve political, rather than scientific aims. The goal of helping people with HIV must coincide with the goal of truth. Perhaps you have the former goal (I do not know this, because I do not know you), but you lack the latter. I do not like to see Science misused.

"Otherwise stop posting all your speculation that might cause someone to miss a chance at life and good health."

You know - I could say the exact same thing to you! I believe the only difference is that I have not made any unsupported claims (whereas you have made a whole bunch). Re-read what I wrote in an earlier post about the costs, opportunity and otherwise, of taking OPC.

However, I'm afraid that you don't get to order me around. If you continue to engage in rhetorical distraction rather than respond to my actual concerns, there's probably no point in our further conversing (which, I admit, would probably not be a loss for me. It might, however, be a loss for you [and for your lovechild, if it actually works] for reasons that you may be too arrogant right now to realize. I would never presume to be able to guess the motives of humans who I don't know. In the alternative remedy industry, I would imagine they range from an honest desire to help people, to delusions of grandeur [or desires for self-aggrandizement without delusions], to greedy individuals preying on the gullible or desperate, to people with "outsider" complexes or Romantic notions of finding salvation in innocent, beneficient Nature. I would therefore never presume to guess your motives, or the motives of any other. Telling me your motives really doesn't help me, because the charlatan, the psychopath, and the liar all claim to be "decent, honest men" just as convincingly as the decent, honest man does (I am not calling you a charlatan, psychopath, or liar. I am merely pointing out that telling someone over the internet that you are honest and good really does very little to bolster your credibility or elucidate your motives).

I will tell you right now: I will not be responding to more of the same. I remain, as always, happy to answer any questions that you may have (about HIV, the immune system, how to go about conducting credible research, etc). I've already given you more than enough opportunities to address my concerns about this product, so now I will feel free to voice my opinions and concerns to others. I hope I have given you some food for thought about your current practices. I hope you will reevaluate the way you conduct your affairs.

"PS - You know, after thinking about it, I believe there that you genuinely care about HIV/AIDS sufferers and have your own concern as well. The reality I know is that no mainstream sources are ever going to embrace a herbal supplement that... only costs from $45 to $60 for a month supply. I might also point this out - neither Marc Swanepoel of the South African pharmaceutical company is marketing the OPC supplement outside of South Africa".

This is actually MORE expensive than commonly used HAART regimens ($150 per year) in South Africa.
We've had this discussion before: pharmaceutical companies will not embrace this regimen (although many of them that don't make any profit in Africa would be happy if it took off there. There are all sorts of ways to get patents on plant-derived cures that I won't go into, but there's really no reason to believe that they're not profitable). Mainstream doctors, patients, and scientists, on the other hand, really don't have a horse in this race. If it works, they will accept it. It is YOUR job to prove that it works. You have not done this. The more you shatter your credibility, the less attention mainstream Science will pay to you. If you are serious about getting the attention of mainstream Science (and mainstream medicine HAS taken herbal remedies very seriously in recent years. Look at artemesia and malaria for a good recent example), you need to do the studies. They may not be the holy grail in your community. If you are actually interested in saving lives rather than self-glorification, then it doesn't really matter what YOUR tiny community thinks. It matters what the vast majority of people with HIV/AIDS and the scientists who study this illness think: that you need actual, solid evidence rather than anecdotes (which cannot be verified)
The results on an actual Sutherlandia (not OPC) clinical trial will be out next year.

"There is just me trying to tell as wide an audience as I can reach because I am so impressed with the results, I know Marc, and I have followed the progress for over 5 years now. In the end, perhaps both of us want the same thing - to save lives and ease suffering. And I regret that I am unable to fully satisfy your concerns. As for myself, I have none other than the fact that so many more could be saved if only they knew."

More could be "saved" if more could be convinced. To be convincing, you need to be credible. Exaggerating, overstating your claims, citing fabricated evidence, etc., do not bring people to your cause. It drives them away from it.

I have no problem if you wish to keep promoting OPC as much as you want, so long as you do not engage in intellectual dishonesty or rhetorical shenanigans to do so. People are free to do whatever they want. All I try to do is point out where others are being misleading. Unless others ask, or the claim is so absurd or dangerous that comment is truly necessary, I don't give opinions about products. All I do is try to make sure that people have correct information. When there IS no good information, but others are claiming that "X, Y, Z, has all been proved", sometimes the only thing you can do is tell the truth: that nothing is really known, so the claims about what has been proved are false. People are free to make their own choices, but I feel that they should make them with correct information. It seems that internet forums are madhouses when it comes to misinformation. So much of what I read about HIV or the immune system in general is just plain incorrect (I'm sure if you know anything about cancer like you claim, you also see plenty of gobbledegook masquerading as knowledge). All I try to do is even the playing field so that the ordinary guy stands a fair chance when he comes up against some guy blabbering on claiming to be an expert.

I am afraid that you are not the first (nor will you be the last) to tread down the read of "ends justifying means" because you believe it will ultimately serve a higher aim (in this case, saving lives). I would suggest you look at how this has fared for others (and their often-forgotten victims).

ps: I was going to post a bunch of examples of Mr. Swanepoel's misstatements here, but on second thought, this is already long, and I just posted some examples in my post to Animated Star (Re: Question for happyhealthygal), so you can find them there if you care to look (or I can paste them if it is too much trouble). I will probably also just post a fuller reply to his reponse to me later (I have to get back to work).

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