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Are you afraid your child will be a mass murderer?
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<blockquote data-quote="Marguerite" data-source="post: 291256" data-attributes="member: 1991"><p>It's the "cult-like sold" that I was referring to. It not only does a disservice to the person being sold this (because it also cuts them off form other possible alternative directions of help) but alsos the emotional blackmail pressure that can get applied to others.</p><p></p><p>However - despite what you and I may feel about a particular clinic (you have this one, I have a couple in my mind which I have had similar experiences with) we do need to be careful because often they do actually help some people. That's the thing - they may throw treatment X at people with conditions ranging through the alphabet but for some people, it is a good fit and it helps.</p><p></p><p>I have a close friend who was telling me that she was about to go see a certain clinic (the one I was referring to that doctored their research results for a conference I attended) and told me how much it was going to cost her. I had to find a way to tactfully tell her that perhaps a second opinion would be indicated (as well as ultimately cheaper). No matter how tempting, I was not going to say, "they're a mob of money-grubbing charlatans" because in fact some of them are idealistic and honest; unaware of the somewhat sharp practices of their colleagues rather than complicit. However, without bad-mouthing them I was able to persuade my friend to enquire elsewhere.</p><p></p><p>And that really is how we should handle these things - by doing what these medical teams DON'T do and prooviding full access to the spectrum of valid medical information, spreading it out before people so they are able to make informed choices.</p><p></p><p>The average person doesn't understand how research works - why should they? But the more our situation differs from the norm, the more we have to educate ourselves. Life isn't fair, we shouldn't have to know all this stuff, but there it is. I was lucky to be in a position to learn a lot and so I try to share it.</p><p></p><p>Sometimes for scientific researchers, it's like being in politics. Science is a very anarchic profession, your colleagues are all there waiting to read what you publish and then trying to tear it to pieces; if your work doesn't stand up to scrutiny you can bet another researcher will expose it very quickly, and publicly too if there is personal glory in it. But that is how we make progress with knowledge. A morning sickness drug is invented, tested and put on the market. Not all countries release it at the same time because testing is not always completed in countries at the same time. But advance samples were given out in Australia, one particular obstetrician handed out lots of free samples to his patients, even while the drug was actually on the market in Germany.</p><p>Then babies are born to the mothers who took the drug - babies born with no arms and sometimes no legs. Or arms like flippers - phocomelia. The doctor in Sydney who handed out free samples from the drug company notices a pattern at about the same time the doctors in Germany publish in the Lancet. The Aussie doctor writes to the Lancet requesting equal discovery rights since he claims he did write to the Lancet at about the same time the German doctors did, outlining his own findings. As a result, the Aussie doctor gets equal "finder's rights" and the kudos that goes along with it even though the Lancet can find no trace of his letter.</p><p></p><p>Yers later that same doctor, now running a very large, highly publicised research foundation based on his reputation as the discoverer of the problems due to thalidomide, is exposed as someone who has fudged his research findings in order to have another morning sickness drug removed from the market. By this time the drug is gone and no other company has tried to market a morning sickness drug, because even after the scientific evidence has been discredited, juries are still awarding large settlements out of "benefit of the doubt" and pity. Out of court settlements killed the second, probably safe, drug. But the researcher's reputation was mud except for the few people who had been convinced (by the same zealot-creating methods) that he is a wonderful man being treated harshly.</p><p>This was big news in Australia when it happened. I think it was even big in other parts of the world. I also had inside knowledge of this, I had a couple of years' advance info from the whistleblowers inside the labs talking to us about their concerns.</p><p></p><p>I need to stress - the work on thalidomide was legitimate. Thalidomide does cause birth defects, although it is still valuable drug combating nausea as long as the pateint is NOT pregnant. But Debendox, the subsequent drug removed from the market - the research was badly flawed, there was actually no valid proof that it was a problem. It may have been a problem, or it may not have been. We will now never know for sure because a highly renowned scientist apparently insisted on results being faked.</p><p></p><p>You never think that this sort of thing will happen. But again, because science is so anarchic, research must be published in peer-reviewed journals and then other scientists tear it to pieces. Any research that can stand up to that kind of scrutiny and be independently replicated, is finally considered valid. The Debendox research was published but nobody was able to duplicate the results. However, it was sufficient evidence to allow people to bring lawsuits. Hence the drug was withdrawn, to save money form more lawsuits. Benefit of te doubt, let's save money.</p><p></p><p>That's why news of a possible breakthrough treatment for something can take decades to finally make it onto the market. And sometimes it just gets buried, because initial reports were too hasty or too optimistic.The doctors and clinics who announce their genius in the popular press are the ones to steer clear of - peer-reviewed journals frown on that sort of prior publicity, it is usually an indication of smoke and mirrors, nothing substantial existing underneath.</p><p></p><p>Oh, the tales I could tell...</p><p></p><p>I tihnk I'll have to put this all in the book.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 291256, member: 1991"] It's the "cult-like sold" that I was referring to. It not only does a disservice to the person being sold this (because it also cuts them off form other possible alternative directions of help) but alsos the emotional blackmail pressure that can get applied to others. However - despite what you and I may feel about a particular clinic (you have this one, I have a couple in my mind which I have had similar experiences with) we do need to be careful because often they do actually help some people. That's the thing - they may throw treatment X at people with conditions ranging through the alphabet but for some people, it is a good fit and it helps. I have a close friend who was telling me that she was about to go see a certain clinic (the one I was referring to that doctored their research results for a conference I attended) and told me how much it was going to cost her. I had to find a way to tactfully tell her that perhaps a second opinion would be indicated (as well as ultimately cheaper). No matter how tempting, I was not going to say, "they're a mob of money-grubbing charlatans" because in fact some of them are idealistic and honest; unaware of the somewhat sharp practices of their colleagues rather than complicit. However, without bad-mouthing them I was able to persuade my friend to enquire elsewhere. And that really is how we should handle these things - by doing what these medical teams DON'T do and prooviding full access to the spectrum of valid medical information, spreading it out before people so they are able to make informed choices. The average person doesn't understand how research works - why should they? But the more our situation differs from the norm, the more we have to educate ourselves. Life isn't fair, we shouldn't have to know all this stuff, but there it is. I was lucky to be in a position to learn a lot and so I try to share it. Sometimes for scientific researchers, it's like being in politics. Science is a very anarchic profession, your colleagues are all there waiting to read what you publish and then trying to tear it to pieces; if your work doesn't stand up to scrutiny you can bet another researcher will expose it very quickly, and publicly too if there is personal glory in it. But that is how we make progress with knowledge. A morning sickness drug is invented, tested and put on the market. Not all countries release it at the same time because testing is not always completed in countries at the same time. But advance samples were given out in Australia, one particular obstetrician handed out lots of free samples to his patients, even while the drug was actually on the market in Germany. Then babies are born to the mothers who took the drug - babies born with no arms and sometimes no legs. Or arms like flippers - phocomelia. The doctor in Sydney who handed out free samples from the drug company notices a pattern at about the same time the doctors in Germany publish in the Lancet. The Aussie doctor writes to the Lancet requesting equal discovery rights since he claims he did write to the Lancet at about the same time the German doctors did, outlining his own findings. As a result, the Aussie doctor gets equal "finder's rights" and the kudos that goes along with it even though the Lancet can find no trace of his letter. Yers later that same doctor, now running a very large, highly publicised research foundation based on his reputation as the discoverer of the problems due to thalidomide, is exposed as someone who has fudged his research findings in order to have another morning sickness drug removed from the market. By this time the drug is gone and no other company has tried to market a morning sickness drug, because even after the scientific evidence has been discredited, juries are still awarding large settlements out of "benefit of the doubt" and pity. Out of court settlements killed the second, probably safe, drug. But the researcher's reputation was mud except for the few people who had been convinced (by the same zealot-creating methods) that he is a wonderful man being treated harshly. This was big news in Australia when it happened. I think it was even big in other parts of the world. I also had inside knowledge of this, I had a couple of years' advance info from the whistleblowers inside the labs talking to us about their concerns. I need to stress - the work on thalidomide was legitimate. Thalidomide does cause birth defects, although it is still valuable drug combating nausea as long as the pateint is NOT pregnant. But Debendox, the subsequent drug removed from the market - the research was badly flawed, there was actually no valid proof that it was a problem. It may have been a problem, or it may not have been. We will now never know for sure because a highly renowned scientist apparently insisted on results being faked. You never think that this sort of thing will happen. But again, because science is so anarchic, research must be published in peer-reviewed journals and then other scientists tear it to pieces. Any research that can stand up to that kind of scrutiny and be independently replicated, is finally considered valid. The Debendox research was published but nobody was able to duplicate the results. However, it was sufficient evidence to allow people to bring lawsuits. Hence the drug was withdrawn, to save money form more lawsuits. Benefit of te doubt, let's save money. That's why news of a possible breakthrough treatment for something can take decades to finally make it onto the market. And sometimes it just gets buried, because initial reports were too hasty or too optimistic.The doctors and clinics who announce their genius in the popular press are the ones to steer clear of - peer-reviewed journals frown on that sort of prior publicity, it is usually an indication of smoke and mirrors, nothing substantial existing underneath. Oh, the tales I could tell... I tihnk I'll have to put this all in the book. Marg [/QUOTE]
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