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Thanks For All The Advice...And We've Decided
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<blockquote data-quote="witzend" data-source="post: 107617" data-attributes="member: 99"><p>Sara, I'm sure that you feel that you have a strong basis to believe these theories for yourself. Your conclusions are very broad for the limited amount of factually based information available to <em>anyone</em>. I'm concerned that you may be overstepping the bounds of your profession, as you are not a pharmacist, and that some parent here might deny their child treatment that could make their life better based upon your very strong feelings about these medications.</p><p></p><p>Don't get me wrong, I strongly resisted medication with M for my own reasons about diagnosis'ing. But, I have to wonder, where do you get the expertise to tell someone who is working with a number of doctors something like this? What if you stopped a parent from saving their child?</p><p></p><p></p><p></p><p>How do you know it's not a placebo affect? How do you know it's not just feeling better that they have made a decision to take control of their lives? Your theories are not absolute and it scares me that someone might make the wrong decision based upon your theories that because a drug company may or may not have done a study that they definitely didn't release, you can paint the effectiveness of these drugs and their possible side affects with such a broad brush. Honestly, the things you say sound more like conspiracy theories than fact. If you are so concerned and feel that your theories will hold water, why not help present it to the NIMH and get a study done? You're smart and articulate enough. Then everyone will know the answer.</p><p></p><p>I'll tell you something about anecdotal theories on medications. I have FSH Muscular Dystrophy. About 10 years ago, a lady with a Phd who also has the disease began posting articles that she knew of three people who were "asymptomatic" because they had been taking a supplemental drink called "glyco-nutrients" (sugar water) from "Mannatech" in a controlled study. Doris began publishing this as a "cure" for her FSH. She then began giving presentations, and you could be allowed to watch a videotape, but only so long as she was there to explain it. She refused to allow literature out of her possession unless she could explain it to you, and you couldn't keep it after she left because she "was being persecuted by the government."</p><p></p><p>About this time, someone pointed out that Doris was on the Board of Directors of Mannatech, and was being compensated with stock options. But <em>really</em> these three study members were cured! She began to propose NIH studies on her theory. There's lot's of money in studies. And since "Glyco-Nutrients" are available without a prescription, 10s of thousands of people would buy them and try them until the study was completed.</p><p></p><p>Doris and her husband had a small bunch of FSHD patients who were their groupies. They politicked for them with the NIH. Around then it came out that the three test subjects were actually Doris, her brother, and her son. Their groupies persisted and soon many of them were following this regimine. It seemed harmless enough, until intitial <em>real and</em> anecdotal studies of 6 months showed it wasn't working. Well, then Doris comes up with "we were taking diltiazem, a calcium channel blocker as well. That's what made it work for us and not you. So, these hundreds of middle aged groupies who are using canes or in wheelchairs for a majority of their personal mobility start conning their doctors into taking that drug. They also decide that if they're taking "calcium channel blockers" they should also stop all intake of calcium. No more milk or dairy. No more fortified foods, no more daily vitamins, no more fish. Unfortunately, now instead of falling and hurting themselves and having difficult PT recoveries, they're falling and breaking bones, no recovery, and a couple died. NIH tries the double blind study for 6 months on 200 patients. There's no indication that it will change anyone's symptoms for the better, let alone "cure" them. The groupies came up with their next theory, that the study should have been 24 months, and that they didn't really need the Glyco Nutrients, just diltiazem. And it isn't actually a cure, it <em>can</em> keep your disease from progessing for a while. Which would be <em>great</em> except a symptom of the disease is that you can go for years and even decades with no progression of the disease. So, what this has come around to is she is saying it does exactly for you what would happen without it. </p><p></p><p>All this because some lady who stood to gain a lot of money from increased sales of diltiazem, whose company has been investigated and fined for financial fraud on shareholders, said that she and her brother and her son were "asymptomatic" after a couple of weeks on this stuff. Yet you can look at any picture of her and she clearly still has symptoms. If she had just done it to herself, I wouldn't have cared. But hundreds of people I knew and cared about and who were desperate for a cure for themselves and their children cut a basic nutrient completely out of their diets for years and many harmed themselves. We won't know for a while what will happen to the children and teens whose parents fell for this load of crock. </p><p></p><p>So really, you worry me for people when you make such broad unfounded statements, and tell them to go against what they and their doctors have decided. Maybe a positive attitude on their part might be what is needed.</p></blockquote><p></p>
[QUOTE="witzend, post: 107617, member: 99"] Sara, I'm sure that you feel that you have a strong basis to believe these theories for yourself. Your conclusions are very broad for the limited amount of factually based information available to [I]anyone[/I]. I'm concerned that you may be overstepping the bounds of your profession, as you are not a pharmacist, and that some parent here might deny their child treatment that could make their life better based upon your very strong feelings about these medications. Don't get me wrong, I strongly resisted medication with M for my own reasons about diagnosis'ing. But, I have to wonder, where do you get the expertise to tell someone who is working with a number of doctors something like this? What if you stopped a parent from saving their child? How do you know it's not a placebo affect? How do you know it's not just feeling better that they have made a decision to take control of their lives? Your theories are not absolute and it scares me that someone might make the wrong decision based upon your theories that because a drug company may or may not have done a study that they definitely didn't release, you can paint the effectiveness of these drugs and their possible side affects with such a broad brush. Honestly, the things you say sound more like conspiracy theories than fact. If you are so concerned and feel that your theories will hold water, why not help present it to the NIMH and get a study done? You're smart and articulate enough. Then everyone will know the answer. I'll tell you something about anecdotal theories on medications. I have FSH Muscular Dystrophy. About 10 years ago, a lady with a Phd who also has the disease began posting articles that she knew of three people who were "asymptomatic" because they had been taking a supplemental drink called "glyco-nutrients" (sugar water) from "Mannatech" in a controlled study. Doris began publishing this as a "cure" for her FSH. She then began giving presentations, and you could be allowed to watch a videotape, but only so long as she was there to explain it. She refused to allow literature out of her possession unless she could explain it to you, and you couldn't keep it after she left because she "was being persecuted by the government." About this time, someone pointed out that Doris was on the Board of Directors of Mannatech, and was being compensated with stock options. But [I]really[/I] these three study members were cured! She began to propose NIH studies on her theory. There's lot's of money in studies. And since "Glyco-Nutrients" are available without a prescription, 10s of thousands of people would buy them and try them until the study was completed. Doris and her husband had a small bunch of FSHD patients who were their groupies. They politicked for them with the NIH. Around then it came out that the three test subjects were actually Doris, her brother, and her son. Their groupies persisted and soon many of them were following this regimine. It seemed harmless enough, until intitial [I]real and[/I] anecdotal studies of 6 months showed it wasn't working. Well, then Doris comes up with "we were taking diltiazem, a calcium channel blocker as well. That's what made it work for us and not you. So, these hundreds of middle aged groupies who are using canes or in wheelchairs for a majority of their personal mobility start conning their doctors into taking that drug. They also decide that if they're taking "calcium channel blockers" they should also stop all intake of calcium. No more milk or dairy. No more fortified foods, no more daily vitamins, no more fish. Unfortunately, now instead of falling and hurting themselves and having difficult PT recoveries, they're falling and breaking bones, no recovery, and a couple died. NIH tries the double blind study for 6 months on 200 patients. There's no indication that it will change anyone's symptoms for the better, let alone "cure" them. The groupies came up with their next theory, that the study should have been 24 months, and that they didn't really need the Glyco Nutrients, just diltiazem. And it isn't actually a cure, it [I]can[/I] keep your disease from progessing for a while. Which would be [I]great[/I] except a symptom of the disease is that you can go for years and even decades with no progression of the disease. So, what this has come around to is she is saying it does exactly for you what would happen without it. All this because some lady who stood to gain a lot of money from increased sales of diltiazem, whose company has been investigated and fined for financial fraud on shareholders, said that she and her brother and her son were "asymptomatic" after a couple of weeks on this stuff. Yet you can look at any picture of her and she clearly still has symptoms. If she had just done it to herself, I wouldn't have cared. But hundreds of people I knew and cared about and who were desperate for a cure for themselves and their children cut a basic nutrient completely out of their diets for years and many harmed themselves. We won't know for a while what will happen to the children and teens whose parents fell for this load of crock. So really, you worry me for people when you make such broad unfounded statements, and tell them to go against what they and their doctors have decided. Maybe a positive attitude on their part might be what is needed. [/QUOTE]
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