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Parent's of Autistic child suing over death...
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<blockquote data-quote="Marguerite" data-source="post: 64690" data-attributes="member: 1991"><p>I think a big part of the problem is parents are desperate. We also tend to blame ourselves. I have some scientific and quasi-medical training, and even with that, I still get caught up in, "Was it the medication I had to take while I was pregnant?" I've been constantly reassured otherwise - a lot of women have to take the same stuff to prevent labour and I've been told that no significant correlation exists between this medication and the incidence of autism in the children born subsequently, but still I wonder.</p><p></p><p>For parents with neither the scientific understanding nor the ability to think in scientific terms, a doctor promising answers and at least some level of improvement must seem like a saint from heaven. Then there is the emotional blackmail also often thrown into the mix - "I know it's expensive, but what price can you put on your child's welfare? Surely it's worth mortgaging your property? Or don't you want your child to be well?"</p><p></p><p>I'm older and more cynical these days. I'm less polite with these charlatans than I used to be. That's not to say it's all bunkum or a waste of time, but there are certain rules to keep in mind whenever you're checking out anything "on the fringe" - </p><p></p><p>1) Ask for evidence of research. You don't have to read the whole paper, just the abstract or the summary. But the whole paper has to be available to you because it contains vital information. You look for:</p><p> a) who did the research (ie do they also happen to work for the company trying to sell this product?) and has this work been independently replicated (research is not valid until some completely different group, with no ties to the first group, manages to duplicate the results</p><p> b) who paid for it (subjects in a research study should never have to pay to be in a research study) because again, if the company marketing the product also paid for the research, often they have a good reason to only accept results that back up their product</p><p> c) where it was published, and when (reputable scientific journals have very high standards - if the paper was accepted by a mainstream scientific journal, chances are it has credibility)</p><p></p><p>Then go and Google for similar studies, because the company promoting the product has a vested interest in not showing you research or discussion that says the product is no good. They only show you the stuff that makes them look good.</p><p></p><p>2) Do they rely on anecdotal evidence, or statements from individuals (testimonies) to promote the product? In Australia it is now illegal for a company claiming a product to be therapeutic, to advertise using testimonials. It's simply too easy to manipulate, or even to fabricate. Proper studies should always be able to be independently verified. How can you check up on a testimony? Will they give you the phone numbers of these people claiming it to be a wonderful product? Will they also tell you how much, if anything, they paid for this glowing reference?</p><p>The product could be sent out to 100 people and of that number, there will always be some who improve anyway (placebo effect). usually it's about 10-15%. If they get letters from 50 people, with 45 of those letters saying, "Your product was useless, I want my money back," and the remaining 5 saying, "yeah, it was great, I feel much better now," which letters do you think they will use in their advertising?</p><p></p><p>The trouble is (and like MWM, I've seen this nasty tactic), practitioners whose main motivation is to sign up customers to something expensive and potentially lucrative, do not take kindly to any potential threat to their intended income. They will use every dirty trick in the book. Unless, of course, they already have more customers than they can cope with and have no fear of losing them by you exposing them as frauds. If they have any fear there, though, they will fight dirty. So if they get upset with you for asking for what amounts to references, don't trust them. No reputable doctor or scientist would get upset; they welcome the scrutiny because they know they can stand up to it. Coming through such scrutiny with flying colours is a gilt-edged endorsement and would be in their interests.</p><p>So if asking, "please can I read some research publications on this topic?" or "Where have you published your results?" brings their anger down on you, be suspicious. Responses I have seen include, "We don't discuss the science with patients, you need to be a qualified medical practitioner to have the training to understand it," to "How dare you question me? Are you calling me a liar? A fraud? If you feel that way then I don't think I can help you. You can take your child and go elsewhere, perhaps to the conservative medical fraternity who are all out to get me and who have clearly been SOooo much help to you until now [loads of sarcasm] ... your scepticism means you don't deserve my generous offer to treat your child."</p><p></p><p>One cute little trick to watch out for - a research team who shall remain nameless, that I had dealings with in terms of their "breakthrough discovery that was likely to get them a Nobel Prize" and who had coverage on some Australian mainstream science documentary TV shows, had an abstract of their research distributed to the media. We also got a copy for our publication, they wanted me to publish it. But I publish nothing scientific without citation. I asked for the citation (ie where and when was it published?) and found that it NEVER had been published. In fact, the paper it was supposed to be an abstract of had not even been written. Scientifically, this is like a final year high school student being asked in his final exams to write a dissertation on Shakespeare, and handing in a drawing of a stick figure in green crayon.</p><p>But these guys had promised a cure within five years (this was fifteen years ago) - and those who were desperate for a cure were furious with me for daring to ask embarrassing questions. Why were the people furious? Because these 'scientists' had gone to their 'clients' - the desperate people pouring money into non-existent research - and told them that my scepticism (and that of others in my team) was threatening their enthusiasm for the project.</p><p></p><p>Scientific confidence tricksters, especially those apparently backed by reputable, respectable educational and medical institutions, do the worst damage of all.</p><p></p><p>When you are a parent, you can get desperate. But always try and stay in touch with reality and commonsense. Something may actually be on the fringe, and legitimate. But look into it for yourself and make an intelligent, educated decision. Don't just believe every promise you hear. As the French used to say in crime novels, "Cherchez la femme," meaning "Look for the woman, there you will find the motive," in cases like those peddling 'unusual' medical treatments, look for the almighty dollar. Find the driving force, the motivation, and understand it, before you too get ripped off both financially, personally and maybe even health-wise. (I'm going to have to write a book about this story, but it would have to be satire - it's simply unbelievable, and I had access to some white-hot inside info that is just too outrageous to ever be considered likely).</p><p></p><p>Become your own best scientific advisor. Just as we become experts in parenting, learn how to think critically and impartially, like a scientist. Learn how to understand as much as you can. And if someone promises you the earth, get it in writing with a money-back guarantee.</p><p></p><p>Marg</p></blockquote><p></p>
[QUOTE="Marguerite, post: 64690, member: 1991"] I think a big part of the problem is parents are desperate. We also tend to blame ourselves. I have some scientific and quasi-medical training, and even with that, I still get caught up in, "Was it the medication I had to take while I was pregnant?" I've been constantly reassured otherwise - a lot of women have to take the same stuff to prevent labour and I've been told that no significant correlation exists between this medication and the incidence of autism in the children born subsequently, but still I wonder. For parents with neither the scientific understanding nor the ability to think in scientific terms, a doctor promising answers and at least some level of improvement must seem like a saint from heaven. Then there is the emotional blackmail also often thrown into the mix - "I know it's expensive, but what price can you put on your child's welfare? Surely it's worth mortgaging your property? Or don't you want your child to be well?" I'm older and more cynical these days. I'm less polite with these charlatans than I used to be. That's not to say it's all bunkum or a waste of time, but there are certain rules to keep in mind whenever you're checking out anything "on the fringe" - 1) Ask for evidence of research. You don't have to read the whole paper, just the abstract or the summary. But the whole paper has to be available to you because it contains vital information. You look for: a) who did the research (ie do they also happen to work for the company trying to sell this product?) and has this work been independently replicated (research is not valid until some completely different group, with no ties to the first group, manages to duplicate the results b) who paid for it (subjects in a research study should never have to pay to be in a research study) because again, if the company marketing the product also paid for the research, often they have a good reason to only accept results that back up their product c) where it was published, and when (reputable scientific journals have very high standards - if the paper was accepted by a mainstream scientific journal, chances are it has credibility) Then go and Google for similar studies, because the company promoting the product has a vested interest in not showing you research or discussion that says the product is no good. They only show you the stuff that makes them look good. 2) Do they rely on anecdotal evidence, or statements from individuals (testimonies) to promote the product? In Australia it is now illegal for a company claiming a product to be therapeutic, to advertise using testimonials. It's simply too easy to manipulate, or even to fabricate. Proper studies should always be able to be independently verified. How can you check up on a testimony? Will they give you the phone numbers of these people claiming it to be a wonderful product? Will they also tell you how much, if anything, they paid for this glowing reference? The product could be sent out to 100 people and of that number, there will always be some who improve anyway (placebo effect). usually it's about 10-15%. If they get letters from 50 people, with 45 of those letters saying, "Your product was useless, I want my money back," and the remaining 5 saying, "yeah, it was great, I feel much better now," which letters do you think they will use in their advertising? The trouble is (and like MWM, I've seen this nasty tactic), practitioners whose main motivation is to sign up customers to something expensive and potentially lucrative, do not take kindly to any potential threat to their intended income. They will use every dirty trick in the book. Unless, of course, they already have more customers than they can cope with and have no fear of losing them by you exposing them as frauds. If they have any fear there, though, they will fight dirty. So if they get upset with you for asking for what amounts to references, don't trust them. No reputable doctor or scientist would get upset; they welcome the scrutiny because they know they can stand up to it. Coming through such scrutiny with flying colours is a gilt-edged endorsement and would be in their interests. So if asking, "please can I read some research publications on this topic?" or "Where have you published your results?" brings their anger down on you, be suspicious. Responses I have seen include, "We don't discuss the science with patients, you need to be a qualified medical practitioner to have the training to understand it," to "How dare you question me? Are you calling me a liar? A fraud? If you feel that way then I don't think I can help you. You can take your child and go elsewhere, perhaps to the conservative medical fraternity who are all out to get me and who have clearly been SOooo much help to you until now [loads of sarcasm] ... your scepticism means you don't deserve my generous offer to treat your child." One cute little trick to watch out for - a research team who shall remain nameless, that I had dealings with in terms of their "breakthrough discovery that was likely to get them a Nobel Prize" and who had coverage on some Australian mainstream science documentary TV shows, had an abstract of their research distributed to the media. We also got a copy for our publication, they wanted me to publish it. But I publish nothing scientific without citation. I asked for the citation (ie where and when was it published?) and found that it NEVER had been published. In fact, the paper it was supposed to be an abstract of had not even been written. Scientifically, this is like a final year high school student being asked in his final exams to write a dissertation on Shakespeare, and handing in a drawing of a stick figure in green crayon. But these guys had promised a cure within five years (this was fifteen years ago) - and those who were desperate for a cure were furious with me for daring to ask embarrassing questions. Why were the people furious? Because these 'scientists' had gone to their 'clients' - the desperate people pouring money into non-existent research - and told them that my scepticism (and that of others in my team) was threatening their enthusiasm for the project. Scientific confidence tricksters, especially those apparently backed by reputable, respectable educational and medical institutions, do the worst damage of all. When you are a parent, you can get desperate. But always try and stay in touch with reality and commonsense. Something may actually be on the fringe, and legitimate. But look into it for yourself and make an intelligent, educated decision. Don't just believe every promise you hear. As the French used to say in crime novels, "Cherchez la femme," meaning "Look for the woman, there you will find the motive," in cases like those peddling 'unusual' medical treatments, look for the almighty dollar. Find the driving force, the motivation, and understand it, before you too get ripped off both financially, personally and maybe even health-wise. (I'm going to have to write a book about this story, but it would have to be satire - it's simply unbelievable, and I had access to some white-hot inside info that is just too outrageous to ever be considered likely). Become your own best scientific advisor. Just as we become experts in parenting, learn how to think critically and impartially, like a scientist. Learn how to understand as much as you can. And if someone promises you the earth, get it in writing with a money-back guarantee. Marg [/QUOTE]
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