Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 In a message dated 4/9/00 11:17:30 AM Pacific Daylight Time, Laurion@... writes: << Personally, I wouldn't hesitate to be the first modern day Sleeping Beauty, if I could wake up cured, pre-pre-menopausal, with the skin and the body of a 20 year old. AND the Prince, I would absolutely HAVE to have him also. Dreaming of Gere as Lancelot Laurion.......reporting directly from Camelot >> Is any of this stuff that you are reporting on being used right now by any of Cheney's patients....or by anyone on this list? Because I thought in Cheneys video or in one of his reports he talks about it (the products you mentioned) making some people worse-much worse? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2000 Report Share Posted April 9, 2000 Laurion Thanks for your thoughtful reply. I have been in a HGH study over the last 8 month where I get Humatrope which is Lilly's brand of human growth hormone. It is no panacea for CFS. My IGF-1 was over 500 the last time I was check -- the highest my endo had ever seen and he does research in this area. IGF-1 is only a proxy measure of human growth hormone. I am also on testosterone replacement therapy and T (as I like to call it) also increases the secretion of the hormone IGF-1. Another proxy measure for HGH is the protein binding factor IGFBP-3 and it is a more stable measure of HGH. When I was last tested I had twice the maximun level of IGF-1 but I was just in the high normal range for IGFBP-3. I am now off therapy in order to have another pituitary stimulation test done --this test is the only reliable way to determine the need for HGH replacement therapy. I am not slamming Cheney when I say that he is not an academic researcher, he get ideas and tries them out but he is an aggressive clinician who tries new things. He advocates some of the HGH supplements but these would only work if you have a good pit because the best they can do is to stimulate the pit to produce a little more HGH and I think that is a generous statement. He couldn't recommend HGH replacement therapy because he is not qualified in that area. The pit stimulation test is expensive and HGH is even more expensive. Yes it will help an olympic athlete shave a tenth or a one hundredth of a second of their time and that can mean the difference between gold or silver. But HGH will not cure CFS -- if you need it you will get slightly stronger and it may help with things like bone health. However if you are predisposed HGH can also cause the onset of diabetes. I think the serious research regarding growth factors is being done in areas of neurology where they can observe tissue damage and regeneration. Spinal cord injuries tends to come first to mind but I think the real progress will first be in area like MS where there is relatively minor damage (compared to having ones spine severed) and the repair to the tissue can be observed. Having said that Cheney might be on to something with his Fetal Bovine Growth Factor (did I get that right?). I think there is some research that show the brains of CFSers as having small lesions & for all I know FBGF might help. It's not quite a shot in the dark but it is also not exact science either. Since there is no exact science in CFS to guide treatment what choice do we have. We either do basically nothing or we follow these free wheeling entrepreneur, like Cheney. I wish some folk would try FBGF so I could benefit from their experience. I am a walking (or should I say sitting) example that HGH therapy will not turn back the hands of time and that it is of only a minor benefit to those with CFS. When I was tested I was clearly at or above the normal level for the 40-50 age group & I am 47. I felt that it did help with muscle strength and when I had a good day I felt fairly strong for someone who had been lying around for three or four days. But other than that it had no effect on CFS symptoms. I hope no one jumps on me for my critique of Cheney. He is not a saint nor a sinner. If it was not for Drs. like him we would have nothing to hope for. But he does move fast and loose and I think that because this is a experimental news group we should be able to objectively critique those whose intentions may be in our interest but their theories may not be as solid as their enthusiasm for their own ideas Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 << I wish some folk would try FBGF so I could benefit from their experience. >> I don't understand. Why do you want someone else to try Cheney's protocol so that you can benefit from their experience when you have little or no regard for Cheney's research methods? In other words, why would you want to try something a doctor recommended when you think the doctor's research practices are academically unsound? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 10, 2000 Report Share Posted April 10, 2000 with such a nice last name you can't be all bad. Cheney may or may not be academically unsound that is not the point I was making. I just said he is outside the mainstream of academic medicine. Does someone want to make the point he is inside that mainstream of academic medicine. I am sure that he is a careful clinician and would go by the motto " first do no harm " . If Cheney were an unsound clinician he would be sued out of practice by now. I have said so many times that I am glad we have folks like Cheney who practice outside the mainstream of academic medicine. But we need to recognize the weakness of the " research " that folk like Cheney produce. My point is such a simple and modest one that I cannot help but view the emotionality it produces as hero worship. So yes yes yes I look forward to hearing about those who try his treatments. If you try FBGF I hope you will report to this board about your experience. steve Sheri wrote: > > > << I wish some folk would try FBGF so I could benefit from their > experience. >> > > I don't understand. Why do you want someone else to try Cheney's > protocol so that you can benefit from their experience when you have > little or no regard for Cheney's research methods? In other words, > why would you want to try something a doctor recommended when you > think the doctor's research practices are academically unsound? > > ------------------------------------------------------------------------ > Get a NextCard Visa, in 30 seconds! > 1. Fill in the brief application > 2. Receive approval decision within 30 seconds > 3. Get rates as low as 2.9% Intro or 9.9% Fixed APR > Apply NOW! > 1/2646/2/_/531724/_/955349128/ > ------------------------------------------------------------------------ > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Just because Cheney's research is not within the realm of an academic medical center does not mean there is no value to it;if the study is structured according to basic statistical principles it can be quite helpful.. I remain unconvinced that many of the physicians conducting research are " free " in such research. Many are more beholden to the adulation of others and their own reputations; I can imagine there are some appraoches to CFS some would consider but the " risk " of ridicule from their peers outweighs the benefit of what such research might yield. Following the orthodoxy of the medical profession is preeiminent over questioning current ideas of illness and treatment.I base my opinion on my experience now as a CFS patient and a former hospital administrator.I congratulate Dr Cheney on his desire to take risks. Phil Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Cheney is a very creative clinician == is work has value == just not the same kind of value that well designed studies have. Do not feel sorry for cheney and his free research he probably makes a million buck a year off people who are on disability income. steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Steve-wow-I thought I was harsh but you really are harsh! (smile) -but you are entitled to your opinion!!!!! Just don't judge hime to hard-even though I have never been to him or followed his protocols I think he really is trying to help people........even if he makes a million dollars a year(smile)! Re: Response to Questions > > > Cheney is a very creative clinician == is work has value == just not the same kind of value that well designed studies have. Do not feel sorry for cheney and his free research he probably makes a > million buck a year off people who are on disability income. > steve > > > ------------------------------------------------------------------------ > Enjoy the award-winning journalism of The New York Times with > convenient home delivery. And for a limited time, get 50% off for the > first 8 weeks by subscribing. Pay by credit card and receive an > additional 4 weeks at this low introductory rate. > 1/3102/2/_/531724/_/956203800/ > ------------------------------------------------------------------------ > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 20, 2000 Report Share Posted April 20, 2000 I follow a lot of Cheney's protocols. I think he is a brilliant clinician with a lot to offer. I hope scientist will pick up so of his ideas. I wish someone would ask cheney " are you a traditional academic scientist of a creative clinician who tries things and tries to document things as best he can. Then ask are you in the mainstream of traditional medicine or a bit of a maverick making your own way in a field that is poorly understood. then ask do you make more money that a traditional academic research? See what he says. Steve hudecz wrote: > Steve-wow-I thought I was harsh but you really are harsh! (smile) -but you > are entitled to your opinion!!!!! Just don't judge hime to hard-even though > I have never been to him or followed his protocols I think he really is > trying to help people........even if he makes a million dollars a > year(smile)! > > Re: Response to Questions > > > > > > > Cheney is a very creative clinician == is work has value == just not the > same kind of value that well designed studies have. Do not feel sorry for > cheney and his free research he probably makes a > > million buck a year off people who are on disability income. > > steve > > > > > > ------------------------------------------------------------------------ > > Enjoy the award-winning journalism of The New York Times with > > convenient home delivery. And for a limited time, get 50% off for the > > first 8 weeks by subscribing. Pay by credit card and receive an > > additional 4 weeks at this low introductory rate. > > 1/3102/2/_/531724/_/956203800/ > > ------------------------------------------------------------------------ > > > > This list is intended for patients to share personal experiences with each > other, not to give medical advice. If you are interested in any treatment > discussed here, please consult your doctor. > > > > ------------------------------------------------------------------------ > Enjoy the award-winning journalism of The New York Times with > convenient home delivery. And for a limited time, get 50% off for the > first 8 weeks by subscribing. Pay by credit card and receive an > additional 4 weeks at this low introductory rate. > 1/3102/2/_/531724/_/956208543/ > ------------------------------------------------------------------------ > > This list is intended for patients to share personal experiences with each other, not to give medical advice. If you are interested in any treatment discussed here, please consult your doctor. Quote Link to comment Share on other sites More sharing options...
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