Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 In a message dated 5/14/2004 4:23:01 PM Eastern Standard Time, pj7@... writes: Who would possibly be hired by HEB to promote Ampligen? This is completely illegal and would be seriously frowned upon by the FDA. Sorry, a, but what you've written above is not true. Many are on various boards of Hemispherx BioPharma and that is not illegal. One example is Anthoney Komaroff, M.D. He was appointed only within the past year and is a member of the current Chronic Fatigue Syndrome Advisory Board. While the FDA has twice had to chastise the company for wrongdoing during the trials, this is not illegal any more than it is considered unethical for Dr. Komaroff to vote down a name change just because he was on the original committee that selected the name of chronic fatigue syndrome. What may be considered unethical or immoral is not necesarrity illegal. Gail Kansky (in case you wanted my full name!) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Tealk, Who would possibly be hired by HEB to promote Ampligen? This is completely illegal and would be seriously frowned upon by the FDA. I doubt you realize that or you would not have hinted so subtly of such behavior. Please be very careful what you write. I would be most interested to hear the FACTS of what you wrote. How about a name for this human being? BTW, wouldn't you want patients who had problems to be dropped from studies? Would you rather they be, say, killed? Perhaps you meant the study did not list officially how many patients withdrew from the study. Again, if you wish to say that you should show an abstract or entire article that did not indicate how many patients withdrew, for which you know some who did, by name, personally. Currently Ampligen is the only drug on earth being researched for approval by the US FDA to treat chronic fatigue syndrome. If it did NOTHING at all we should still all be hoping it got approved. We need the recognition. Are you aware of how little most cancer treatment currently does for cancer - like extends life expectancy by 3 months? Could Ampligen be worse? Sincerely, a M. Carnes I always use my real name. From: " tea lk " <48tealk17@...> Subject: RE: Re: Ampligen hi people, I agree with david about the questionable accuracy of the ampligen studies..patients who had promblems were dropped from the studies ... some of the people in the stuides had connections to the company that makes the ampligen etc...biasing their comments and results.... one of the forerunners on this list knocked apmligen but once they were hired by the company that makes it as a writer they had only glowing reports about it. I agree that small number of people have truely gotten their lives back but not most people taking it and effectiveness often wears off once they stop. tealk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 I'd like to thank for her honest appraisal of her results on ampligen. To a sufferer, the only thing that matters is results. Not politics or vested interests. I wish we could hear from others about their ampligen experience but I can't blame anyone who escapes this illness who would rather not be embroiled in the frustrations of CFSers. Despite my differences with Dr , I am glad that he is trying serious therapy for a serious illness. This is infinitely more reasonable than the endless support doctors are deriving from this epidemic by offering nothing more than vitamins. Ampligen studies should proceed until we determine if the therapy is viable. - Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2004 Report Share Posted May 14, 2004 Hi , >I wish we could hear from others about their ampligen experience... You could join CFS-Ampligen and read their archives, which go back to about 2000. The first person accounts are really interesting. I've been methodically going through the archives--so far I've read 250 posts out of about 2500--and I'm " following " about 40 people through their own stories. My impression at this point is that some were helped; some were not helped; some were made worse; some couldn't tolerate it. I'm looking for a pattern--what do the people who were helped have in common? Sue B., Upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2004 Report Share Posted May 15, 2004 Hi a, My information is from recollection of a cfids brain from many years of being on this list and having gone thru several discussions on ampligen.I question the fact that i as a patient would have paid substantial sums of money to be in the ampligen trials for sic months wheile it was undergoing drug studies for the fda etc... , yet drug companys in the various phases of making new drugs ready for market, the fda makes them go thru as they refine the dosage and side effects is usually free..... Plus i recall that patients were dropped from studies for ? reasons ....poor response , side effects etc...Plus their was a scandal around the stock..its been rough fro the company and the ampligen. etc... I think its a miracle drug for a certain subset of cfids patients who are lucky enuf to benefit from it and afford it. I can only hope the hiv commmunity embraces it as they have more politcal clout than us. tealk.. > [Original Message] > From: a Carnes <pj7@...> > < > > Date: 5/14/2004 4:19:58 PM > Subject: Writer for Ampligen????? > > Tealk, > Who would possibly be hired by HEB to promote Ampligen? This is completely illegal and would be seriously frowned upon by the FDA. I doubt you realize that or you would not have hinted so subtly of such behavior. Please be very careful what you write. I would be most interested to hear the FACTS of what you wrote. How about a name for this human being? > > BTW, wouldn't you want patients who had problems to be dropped from studies? Would you rather they be, say, killed? Perhaps you meant the study did not list officially how many patients withdrew from the study. Again, if you wish to say that you should show an abstract or entire article that did not indicate how many patients withdrew, for which you know some who did, by name, personally. > > Currently Ampligen is the only drug on earth being researched for approval by the US FDA to treat chronic fatigue syndrome. If it did NOTHING at all we should still all be hoping it got approved. We need the recognition. Are you aware of how little most cancer treatment currently does for cancer - like extends life expectancy by 3 months? Could Ampligen be worse? > Sincerely, > a M. Carnes > I always use my real name. > > > From: " tea lk " <48tealk17@...> > Subject: RE: Re: Ampligen > > hi people, > I agree with david about the questionable accuracy of the > ampligen studies..patients who had promblems were dropped from the studies > .. some of the people in the stuides had connections to the company that > makes the ampligen etc...biasing their comments and results.... > one of the forerunners on this list knocked apmligen but once they were > hired by the company that makes it as a writer they had only glowing > reports about it. > I agree that small number of people have truely gotten their lives > back but not most people taking it and effectiveness often wears off once > they stop. > tealk > > > Quote Link to comment Share on other sites More sharing options...
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