Guest guest Posted October 16, 1999 Report Share Posted October 16, 1999 From my own experience with the trials of this drug, I felt like nothing more than a " number " every time I went down there for tests. They don't give you an adequate explanation of everything, they try to get you to put down in writing that you are really worse than you feel, etc. Some of these test results may be quite slanted to say the least. Needless to say, my comfort level was so low, I decided to drop out of the test. Hemospherix should be made to disclose everything. However, remember the livelihood of the company is at stake. However, I also point out that I participated in a test at Cedar Sinai on FMS in Los Angeles, which was not conducted by a drug company. Their theory was that FMS was caused in part by too much bacteria in the lower gut. I have no doubt that the bacteria was a side effect of FMS, but not the cause. Again, the doctors try and convince you after they have treated you that you must feel somewhat better. These tests are doomed to convey false information, because the doctors will do anything to support their premise. Rmember - this is how they get their grant money. Re: Re: ampligen > From: GAILRONDA@... > > In a message dated 10/16/99 11:27:14 AM Eastern Daylight Time, > schweit2@... writes: > > << What is the bottom line on amplegen? >> > I didn't have the time to read all of 's post, but it should include that > no long term studies have ever been done on the Ampligen. Of the first 15 > patients in the United States, one is no longer alive, two have serious > cancers (two different types) and none are well. Most are severely ill. Dr. > and many others from Hemispherx love to tell stories about how much > the first patient, " patient 00 " was helped. In fact, Dr. had a patent > approved just last month that again mentioned her success. She is, however, > never, never, never been well and has gotten progressively worse. Those > physicians that speak of her, and I've heard one lead investigator speak of > her while I was present, say she's out playing golf again and living her life > happily. It is a total fabrication but Patient 00, whose name is > Kaiser, wishes it were so. She just went to a new physician well known in > this field. When she showed up for her appointment, the physician > immediately hospitalized her. Long term follow-up studies are not costly nor > are they difficult and yet have never been done. I remain very wary of the > drug and want much more information that are based on actual studies that can > be proven. The data is not yet there. An ME specialist in England, as well > as a patient and the advisor to the largest national suppport group in that > country has said he would not take the drug nor give anyone else the drug > until much more data has been disclosed. (Dr. Shepard.) > Gail > > > 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 October 18, 1999 Report Share Posted October 18, 1999 In a message dated 10/18/1999 11:00:15 PM Pacific Daylight Time, schweit2@... writes: << HHV-6 (which is one of the things that we probably have) predisposes you to cancer >> Hi ! Are there good placebo controlled studies showing that pwcs get more cancer? If so, could you please give me some references? What kind of cancer? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 GAILRONDA@... > I didn't have the time to read all of 's post, > but it should include that no long term studies have > ever been done on the Ampligen. Of the first 15 patients > in the United States, one is no longer alive, two have > serious cancers (two different types) and none are well. Oh my, Gail. Actually, there have been long-term studies on Ampligen, except they are all taking place in Belgium. De Meirleir has follow-up studies in process. And it is my understanding that Levine is in the middle of doing a follow-up study on the Ampligen trials. I corresponded with several patients from the first studies, and two told me to go for it -- that Ampligen had improved their lives significantly. A third said that the hell of having to go off it (when the FDA didn't approve it and Hemispherx quit giving it out -- an ethical issue, but that's a DIFFERENT problem) made it -- to him -- not worth having gone on it. He was on it the least amount of time of the three I talked to. I also corresponded with Belgian patients. I know some for whom Ampligen worked, and some for whom it didn't. I don't know a single soul who has been completely cured by Ampligen. This is sad, but true. But those of us who have had positive experiences with it have had dramatic changes in what we are able to do. For me, it gave me my MIND back. Which was the worst part of the disease. And I can WALK! It's wonderful! And de Meirleir has had success putting patients back on Ampligen if they develop problems again a few years down the road. Gail wrote: > Most are severely ill. You say there have been no long-term studies. So how can you tell me " most are severely ill. " ???? Where does your information come from? Do you want to share it with me? That is not the information I have -- EXCEPT that patients who only received the drug for six months did not have significant long-run effects. That is why I personally decided to stay on it at least a year. Thank you for sharing Kaiser's opinion with us. I'm very sorry about that. I'd like to more about it. It's sad. So many CFIDS stories are sad. But if you mean that her story is the basis of all the positive information we have about the disease -- well, it isn't. If she has asked individuals no longer to refer to her, and they still do, that speaks volumes about their personalities, but there's not much I can do about that, either. (Although next time I speak to someone from Hemispherx I will mention it to them.) I refer you to Tim Kenny's book, " Living with CFIDS, " for someone who HAS done well on it. Another patient I talked with would not want his name released, but it was for him the diference between being a total blob and being able to have a life. He was enthusiastic about my taking it. (I never met a woman who took it in the 1991 study!!) Understand that if you are someone who used to go 125%, ending up at 80%, which the CDC calls " cured " (I don't!) is a pretty significant dropoff from what you THOUGHT was " normal. " But it's a damn sight better than where I was -- and deteriorating. As for cancer -- I had not heard of a second cancer patient; that is sad. However, this is an age group that gets cancer, and HHV-6 (which is one of the things that we probably have) predisposes you to cancer (yikes!, but true). I do know that the one cancer patient you referred to earlier had specifically asked you NOT to use his name (which you did in your newsletter) and specifically told you that HE didn't think it was due to Ampligen. One should respect those things. Or, what's the difference between your using HIS information in a way HE doesn't want it used -- and the Hemispherx people talking about patient 001 when she doesn't want HER information used? (and perhaps distorted)? > I remain very wary of the > drug and want much more information that are based on actual > studies that can be proven. The data is not yet there. Fair enough, Gail. You're the person that the 516 patients are going through what they are going through for. And -- if you are wary -- don't go on it!!! But why don't you WAIT until that study is completed and the research released? The institutional structure of these experimental studies is just godawful. It's no way to run research. But it's all we have. I know you feel that what I say should be balanced by an equal dose of negativity. But -- what I am talking about happened to ME, to me PERSONALLY. You are talking about things that you have been told happened to other people. If I am positive about it -- well, I have a right to be positive about it!! Ask my family! I also think (hope) most people understand that because I am doing well on it, does not mean everybody is going to. Or that they will. But it is HOPE. SOMETHING works for SOME of us. That is HOPE, Gail. We need hope. What your subtext really is is NOT the simle " I'm not sure that it does any good, " but " I think this is a dangerous drug. " That's what you're trying to say, with all this talk about cancer and deaths (suicides). Now, that's a serious charge! ly, you haven't a single statistical study to go by to say it. Until you do, I wish you would just quit it. I have news for you. Chemotherapy is ghastly -- but if I have breast cancer and I have to go on it, I'll go on it. Maybe you wouldn't. That's your choice. Let me have my choice. Feel free to say, " I won't take it until there's more evidence out there that it works, and there are more people so we can tell whether it's toxic. " Fair enough. But DON'T tell people that it's secretly toxic or secretly dangerous, at the same time you say there are no long-run studies. This is a serious matter. Are you going to tell me there is NO evidence of ANY problems with transfer factor?? Ever?? NO evidence of any possible problems with heparin? NO evidence of any possible problems with interferon? Adverse reactions happen and are a part of studies. The issue to be concerned about with experimental drugs is TOXICITY -- loss of an organ or life. Marc Cavaille-Coll of the FDA said -- at the CFSCC meeting last April -- that there was NO EVIDENCE OF SERIOUS TOXICITY with regard to Ampligen. He's still not fast-tracking it; he wants to see how the Phrase III comes out -- but he stated that it passed all the criteria, and one of the criteria is NO EVIDENCE OF SERIOUS TOXICITY. You don't have to take it. But let's quit with the rumors and let the statistics speak. Other than that, let those of us who are trying an experimental drug talk about OUR experiences, and leave it to others to talk about THEIRS. Schweitzer mailto:schweit2@... 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Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 I'm curious as to why we haven't heard about any " high profile " CFIDS Patients (such as Ackers --the USA World Cup Women's Soccer Star), or " other well known CFIDS Celeb's " read----> with a lot of $$$ available to them for treatment options and alternatives......why haven't THEY tried Ampligen and are touting it's benefits? It just seems weird that's all......all that money lying around with the miracle cure just over the horizon..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 In a message dated 10/19/99 2:00:11 AM Eastern Daylight Time, schweit2@... writes: << Oh my, Gail. Actually, there have been long-term studies on Ampligen, except they are all taking place in Belgium. De Meirleir has follow-up studies in process. And it is my understanding that Levine is in the middle of doing a follow-up study on the Ampligen trials. Again, there have been NO long-term studies of Ampligen. Period. There may be ones that have been said to have taken place. but there is no proof of that...no medical journal peerl-reviewed study showing a long-term trial. De Meirleir has said many things, but he has produced no proof, published no proof, and not one patient has ever been contacted from a long-term trial that has mentioned this, when questioned, to those who have done surveys. Not one. when slides were shown of one follow-up in progress, many researchers complained that the slides were shown so quickly that they could not decifer any of the material at the last AACFS and it told them nothing. The newly elected president of the AACFS was one of those who mentioned this as well as others. If Levine has been doing follow-up studies, he has not announced this, has not finished, has not contacted many people, has not published. I corresponded with several patients from the first studies, and two told me to go for it -- that Ampligen had improved their lives significantly. >> There were only 15 in the first study. Of those, one is dead and two have terminal illnesses and none are doing well now. None have been contacted for a follow-up. They are all in communication with one another today and this would be known if only half were contacted to find out. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 In a message dated 10/19/99 7:27:29 AM Eastern Daylight Time, SWNGDABOAT@... writes: << It just seems weird that's all......all that money lying around with the miracle cure just over the horizon..... >> 's doctor does not reccommend Ampligen to any of his patients with CFS. That is probably true of most high-profile patients. There was one extrememly wealthy person who tried Ampligen many years ago. She got it without being in a trial and before " comopassonate care " that really means pay-as-you-go was available. She is still bedridden and found it to be of no help. She, too, has never been contacted for any long-term effects. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 Hey---if it's bat crap and it works--I say go for it--as long as it's legitimately studied and clinical trailed before hand! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 In a message dated 10/19/1999 2:02:25 PM Eastern Daylight Time, mgrahn@... writes: << There is FAR too much suffering in our CFS community already without having to worry about those in your own camp trying to stop you from getting a treatment that helps. I will NEVER understand that one. >> Marcia, Well said...I like that attitude. There is far too much suffering going on to bicker , I say whatever works for that person..please do it! Come to think of it, who among us would not go into a field and eat cow manure if we thought for one second that it might help. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 wrote: > Hi ! > Are there good placebo controlled studies showing > that pwcs get more cancer? If so, could you please > give me some references? What kind of cancer? , there haven't been good placebo controlled studies of much of ANYTHING with regard to CFS! In a " controlled study, " you have a group with the condition being studied, and another group without it. You give both groups the drug or treatment being considered, and then watch what happens. If the improvement in the diseased group isn't statistically different from the improvement in the " control group " (the people who don't have the disease), then the conclusion is that the drug/treatment wasn't really effective. When they talk about a " placebo, " they mean an even further controlled study -- one group is given the treatment, the other given a " placebo " -- traditionally a sugar pill. Neither group knows which they are getting. If the first group improves, but the second group also improfves to the same amount, then they attribute the improvement to the " placebo effect " -- that somehow THINKING you are going to get better will actually make you better. (That's what is going on with the Phase III " double blind " studies of Ampligen right now.) I think they take the concept of " placebo effect " WAY to far when it comes to testing in the U.S. if they really believe a " placebo effect " can cure cancer -- well then, why both with drugs or hospitalization or surgery at all? Why not tell everybody they're going to get better and forget about it? The whole concept of " placebo effect " is insulting -- particularly with regard to our disease! When you're talking about the likelihood of developing one disease because you have another, you can't use a " placebo " . What they do is take a group of people who have the disease, and follow them long-term to see if they develop conditions different from tnhose in the normal population. The problem for us is that when a person with CFS develops another condition, the CDC concludes they were " misdiagnosed " in the first place -- AND DROPS THEM OUT OF THE STUDY ENTIRELY!! I don't know the extent to which it has changed, but back in 1996 I asked a number of CFS researchers what they do when a patient in their study develops another disease -- say, a heart condition, or MS. They all said -- we drop them from the study, because they no longer fit the definition of CFS. !!!!!!! What that means is that if there are conditions that are COMPLICATIONS of having CFS -- if it makes us more vulneable to cancer, or MS, or lupus, or heart disease, or ANYTHING -- there's no way to know because NOBODY HAS BEEN KEEPING THE STATISTICS!! To my knowledge, that hasn't changed since I asked in 1996. I asked Reeves why they didn't include patients with these conditions in his Wichita study -- just add another variable! He said it wouldn't be " scientific. " That MIGHT make sense if you are talking about a LOT of variables in a test which doesn't have very many subjects -- but when you are collecting a data set, the rule of thumb is to include everything that you can -- later on, when you put the model together, you can decide what you don't want to include. But that means when you learn somethign new, you can go back and redo the study because you still have the information. By throwing the information out, they have wasted all this time, all this money, all these chances to find out what happens when you have CFS/M.E. for a long time. (Note how they always phrase it: there is " no evidence " that patients with CFS/M.E. are more likely to commit suicide. There is " no evidence " that CFS leads to cancer. There is " no evidence " that CFS leads to heart problems. Well, yeah. But then again, there is no evidence that CFS patients AREN'T more likely to commit suicide, there is no evidence that CFS DOESN'T lead to cancer or heart problems. There is no evidence EITHER WAY. You have to collect the evidence for there to BE evidence, and nobody is collecting it!!! The only thing you could do right now would be to run simple correlations -- that is, try to get a sample of patients who have been diagnosed with CFS/M.E. at some time in their lives, and write down what else they have been diagnosed with since then -- then compare that list with a list of normal people. It wouldn't be very rigorous, but it would be a start. So the thing I said about cancer comes not from CFS research -- there's no way to tell! If somebody develops cancer, they pitch them from the study and leave no record as to why! -- but from research about HHV-6. HHV-6a has been " implicated " in several forms of cancer -- and I can't really remember them all, except that one of them is uterine cancer, and it's the reason that Neenyah Ostrom is convinced that Gilda Radner really died from CFS (the CFS would have included an HHV-6a infestation, and the HHV-6a infestation, untreated, led to the cancer that killer her -- it's kind of far-fetched when you first read it, but the evidence on HHV-6, CFS, and cancer, does make you wonder.) I have to admit I thought Ostrom was off her rocker when I first read that -- but now that I know more about HHV-6, I see where she was coming from. I don't have time to research it now. If I get time, I'll try to find the studies that talk about HHV-6a and cancer. But there is a lot that has been written about viruses causing cancer -- and if, for at least some of us, the cause of CFS is an inability to adequately defeat viruses, then draw the conclusion yourself. As I said before -- ugh. Schweitzer mailto:schweit22ix.netcom.com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 SWNGDABOAT@... wrote: > From: SWNGDABOAT@... > > I'm curious as to why we haven't heard about any " high profile " CFIDS > Patients (such as Ackers --the USA World Cup Women's Soccer Star), > or " other well known CFIDS Celeb's " read----> with a lot of $$$ available to > them for treatment options and alternatives......why haven't THEY tried > Ampligen and are touting it's benefits? It just seems weird that's > all......all that money lying around with the miracle cure just over the > horizon..... How many celebs have you heard touting interferon???? I haven't heard any, but still consider it a valuable treatment for some, I'm sure you would be the lst to agree. I don't think anyone has a right to take away or condemn a treatment that works for any of us, including yours. There is FAR too much suffering in our CFS community already without having to worry about those in your own camp trying to stop you from getting a treatment that helps. I will NEVER understand that one. I have never tried Ampligen or Interferon, don't really think I'd be a serious candidate for either one, and have heard of SO many people (even on this list) that were made sicker by interferon. Yet every time I hear a success story like Clements or s, that people are getting their lives back with their own special treatment that works for them I get new hope that someday my suffering will be relieved too, who wouldn't want that for all CFSers??? Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 >From: SWNGDABOAT@... > >Hey---if it's bat crap and it works--I say go for it--as long as it's >legitimately studied and clinical trailed before hand! > And this from an interferon success story!! And I'm right behind you, ! Christie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 19, 1999 Report Share Posted October 19, 1999 Hi, Thank you so much for expressing these sentiments. We DO need each other, whether it is to offer the cow stuff or any other treatment - LOL! In addition, I think that the various causes of our mystery illness(es) are also an important to the treatment component and are worthy of discussion. It is in great part due to Nelly that I have been re-diagnosed and will be treated for lyme disease as of today! In addition, I do have the go-ahead from new doc to use the low-dose interferon for sjogrens and FMS, and I wouldn't have that if not for this list. I am grateful for this list and am glad to see things coming together here - so let's all pat each other on the back and keep hanging in, OK?! Take care, Christie >From: Scampy1@... > >In a message dated 10/19/1999 2:02:25 PM Eastern Daylight Time, >mgrahn@... writes: > ><< There is FAR too much suffering in our CFS community already without >having to worry about those in your own > camp trying to stop you from getting a treatment that helps. I will NEVER >understand that one. > > >> > >Marcia, > >Well said...I like that attitude. There is far too much suffering going on >to bicker , I say whatever works for that person..please do it! >Come to think of it, who among us would not go into a field and eat cow >manure if we thought for one second that it might help. > > > >>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 October 22, 1999 Report Share Posted October 22, 1999 what is the name of the Dr. in Hollywood fl? thanks Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 I share your skepticism about amplegen. However does it not seem clear that at least a few cfsers have benifited from it -- understanding that many have not. Steve Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 22, 1999 Report Share Posted October 22, 1999 The doctor in Hollywood Florida is Dr. Keller. A friend of mine sees him. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 Mike, Asensio hadn't even entered the field of Ampligen when the first negative things about the drug came out. I doubt that any person with CFIDS collaborates or cooperates in any way with this company, no matter how they feel about the drug. However, it has been the position of some advocates of Ampligen to ignore the adverse effects it has on some patients and to spread the rumor that they are in collarboration with Asensio. I, in fact, was accused of speaking with them at the last AACFS conference when Mr. Asensio was there. I not only had no knowledge of what he even looked like, I was not at the session where he spoke! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 31, 1999 Report Share Posted October 31, 1999 In a message dated 10/31/99 12:47:34 PM Eastern Standard Time, jim_toomey@... writes: << Would you happen to know if any of the feedback PWCs are such? >> I didn't collect the initial information, Jim. I do know a few that were interviewed and I know that at least had the testing, but I have no idea what the results were. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Gail wrote: <<While we would like the drug approved so that every patient, rich or poor, could have the choice of trying it if they want to, we feel that ignoring the facts are much more serious and put the patient FIRST. Only the truth will do that and everyone is awqre of how little there has been of that with this particular company. >> Gail, You make some interesting points, but can you really claim to be representing patients by throwing another wrench into the wheel of a company and a drug testing process that has been in the works since 1983? How are we ever going to have access to this drug if people are fighting so hard against it? I think it is important to present the pros and cons of the drug, of course, but for most of us, these facts are simply irrelevant, because we can't GET the drug, and we will never be able to get the drug if the company is pushed again to near-bankruptcy. I would personally rather have access to the drug first, then make my own choices based on the information I hear, and the information I would like to base it on is case reports from actual patients. What I do know is this - I have been sick for almost eight years. ALL of the drugs which have been tested for CFIDS have been found to be most effective for people who have been sick 7 years or less. I would prefer to have the option of this drug, rather than face further decline due to ridiculous infighting between people in the CFIDS community jousting for power or promoting a particular agenda. Many drugs come with known risks. Tricyclic antidepressants, for one, are known to sometimes cause heart problems, yet they are prescribed far and wide to CFIDS patients, even though their positive effects are few and some doctors - most notably Dr. Lerner - have already found evidence of cardiomyopathy in CFIDS patients. I doubt very much that most people taking ampligen are militant activists for the cause of the drug - they are people who borrowed againt the mortgages on their homes to afford it, gave it considerable thought, and did it after evaluating risks. I think those who champion the drug's positive effects tend to be those who are doing better on it, and their stories are important because we all need a sense of hope. Some people with CFIDS are so sick that they would rather risk death by trying a potentially harmful drug than doing nothing. People who think Ampligen is too harmful to try, based on what they hear and read, need not try it. Those who have weighed the risks and want to try it should be able to make that choice. I don't want anyone making that decision for me. What people with CFIDS are lacking, in all areas, is options. I think the role of leadership in this community should be to work together to grant people MORE OPTIONS. If there's one thing all of us should know from this experience, it's that we can't generalize our experiences. Cheney was touting Immunocal. I took it and it made me much sicker. What helps some causes adverse affects for others. We all know this. This is why we so desperately need to make individual choices. Peggy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 In a message dated 11/1/99 4:58:15 PM Eastern Standard Time, Peggomatic@... writes: << You make some interesting points, but can you really claim to be representing patients by throwing another wrench into the wheel of a company and a drug testing process that has been in the works since 1983? >> Peggy, do you really think I have the ability to stop the drug or cause it to be fast-tracked? The information was from patients who had the experiences and are still suffering today. The company is supposed to say nothing about the drug and make no claims until it has been approved. Some of this information comes directly from the FDA and the company has been warned repeatedly but only stopped for two years. I feel the patient should be able to hear all sides and make up their own minds. Instead, they have spread lies and rumors. They even did this to one patient who is deceased, which is the lowest, in my opinion, one can go, claiming that this woman was depressed before she took Ampligen. Even her own doctor stood up to dispute that one. Many patients do want all the facts. Some do not. For those that want to hear the truth, I will continue to print it as well as to print others that tell the truth. In the same issue as this article was one from Jay Goldstein, M.D., another from Hillary , author of Osler's Web (and many did not like the truths she told in that book as well) and many others. But don't think a large company feels threated by me telling the truth. It isn't true. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 In a message dated 11/1/99 6:55:46 PM Eastern Standard Time, mgrahn@... writes: << but without fear of attack. >> Marcia, in the past month, I asked just one question and several answered my query. All other posts have been in reponse. If you go into the archives, you will see that all of mine have been responses to others.....and, you're right, I did feel attacked. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Gail wrote: > Peggy, do you really think I have the ability to stop the drug or cause it > to > be fast-tracked? The information was from patients who had the experiences Consider that Gail understands that if she were speaking anything other than the truth, the whole truth and nothing but about ampligen, that would sue her for millions immediately. We can absolute confidence and trust in Gail's reports about ampligen in the absence of legal action by . Bonnes Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 shari dodd wrote: > Perhaps " ampligen " needs a list all of its own. Shari may have a point! Actually the trials on Ampligen underway must be going smoothly since we aren't hearing any bad " feedback " about it. I suggest it would serve us all better to wait until these " blind " tirals are done and the results published so we can actually hear from more people who have experienced it PERSONALLY good or bad. Those people are not allowed to discuss the treatment until its over as speculation over who is really getting the drug and who isn't would just confuse the issues........its not at all fair to attack a group of people trying a drug who are NOT ALLOWED to respond or defend themselves. Since its not available to us mainstream yet anyway, we are probably getting all excited prematurely. I, however, will not be any part of trying to destroy the drug, the company, its users or any of their reputations. Let them all stand on their own merits. Gail we have heard this same story from you again and again and again on this list and all it does is put people in a mode to have to argue and defend themselves and then we lose good listmembers because NO ONE wants to feel attacked all the time. I would love to see the orignial intent of this list, to speak of our OWN personal experiences with experimental and/or other treatments........but without fear of attack. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 << Why would anyone want Ampligen approved if it is harming them with all the " adverse reactions " you keep alluding to - such as strokes, pain requiring morphine, required tube-feeding, suicides, in general making their health worse than before treatment ?????? >> Hi everyone... Ive been on ampligen for 10 months now in the 511 cost recovery trials in Florida, and all I want to say about any of this is that we each need to make informed descions for ourselves, this is true. However, it is my personal opinion that we each have the right to make that decision in our own way. Whoever does not want the drug, I have one thing to say to you. Dont take it. But, do not try to ruin it for those who desperatley need it. It is we in these trials who are paving the path for the rest of the community to have that choice. It is we who are making the sacrifices and mortgaging our homes, and taking the medical risk. No one forced us to do this. We each made that informed descion. May I suggest that to those of you out there who really want to try ampligen but are sceptical, to wait until approval. Wait till all the records are set straight and the data out. And those of you who want to make it difficult for those of us in the CFIDS community trying to get some results and the first and only drug passed for this illness to please, sit back and wait for all the information to come out. In the end there is only one who will decide the fate of ampligen, and that is the FDA. It has not been an easy time for any of us on these trials, believe me..but if we didnt do this, who then will? It is impossible to find a cure when funds are being diverted from studies, and when we are fighting eachother and not the real enemies..the CDC and the NIH for not finding the cause of this illness, for until there is a cause found, we all know deep inside, a true " cure " will not be either. Just lets not make it any harder for those of us who are willing to take the risks and make the path easier for those in the future. And by the way, in my 10 months on this drug, I have no had none of the things stated above, nor do I feel I have been hurt by ampligen. As I stated to some of you before both in private and here on this list..I am no longer HHV-6 positive, my glutithione levels are normal now, DHEA normal. Thyroid is now normal, and T and B cells are normal after 10 months on ampligen. I am on no other drugs so that I can be pure for this study and really have true results, that way I know for myself personally, that if I do get better, it was the ampligen and not a combo of 25 other possibilities that did this. My doctor tells me its all a matter of time till my brain tells my body that I am no longer ill. I take no more pain killers. The only side effects I experience is getting well. I have no personal interest in the drug...I do not work for Hem, nor do I ever care to. I am not at dan 's study. And the only thing I give a rats rear end about is how I can afford to continue to take this medication..into the next year. The funny thing about all this is that the very people who are trying to stop the progress of this drug will be the very first to run to try it once approved. And that in itself is a sad sad thing. So Like I said before, its in the hands of the FDA. The truth will speak for itself in the end. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 1, 1999 Report Share Posted November 1, 1999 Peggy: You should have the choice; but you are also entitled to know all of the risks, and not those risks that the drug company only wants you to know. There seems to be a lot of controversy over this drug and perhaps there is a good reason that the controversy exists. I too, believe that people should have choices, but I also believe that the choices must be informed choices. One can only have an informed choice, if he or she is made aware of all the facts. At 04:57 PM 11/1/99 -0500, Peggomatic@... wrote: >From: Peggomatic@... > >Gail wrote: ><<While we would like the drug approved so that every patient, rich or poor, > >could have the choice of trying it if they want to, we feel that ignoring the > >facts are much more serious and put the patient FIRST. Only the truth will > >do that and everyone is awqre of how little there has been of that with this > >particular company. >> > >Gail, > >You make some interesting points, but can you really claim to be representing >patients by throwing another wrench into the wheel of a company and a drug >testing process that has been in the works since 1983? How are we ever going >to have access to this drug if people are fighting so hard against it? I >think it is important to present the pros and cons of the drug, of course, >but for most of us, these facts are simply irrelevant, because we can't GET >the drug, and we will never be able to get the drug if the company is pushed >again to near-bankruptcy. I would personally rather have access to the drug >first, then make my own choices based on the information I hear, and the >information I would like to base it on is case reports from actual patients. >What I do know is this - I have been sick for almost eight years. ALL of the >drugs which have been tested for CFIDS have been found to be most effective >for people who have been sick 7 years or less. I would prefer to have the >option of this drug, rather than face further decline due to ridiculous >infighting between people in the CFIDS community jousting for power or >promoting a particular agenda. Many drugs come with known risks. Tricyclic >antidepressants, for one, are known to sometimes cause heart problems, yet >they are prescribed far and wide to CFIDS patients, even though their >positive effects are few and some doctors - most notably Dr. Lerner - have >already found evidence of cardiomyopathy in CFIDS patients. I doubt very >much that most people taking ampligen are militant activists for the cause of >the drug - they are people who borrowed againt the mortgages on their homes >to afford it, gave it considerable thought, and did it after evaluating >risks. I think those who champion the drug's positive effects tend to be >those who are doing better on it, and their stories are important because we >all need a sense of hope. > >Some people with CFIDS are so sick that they would rather risk death by >trying a potentially harmful drug than doing nothing. People who think >Ampligen is too harmful to try, based on what they hear and read, need not >try it. Those who have weighed the risks and want to try it should be able >to make that choice. I don't want anyone making that decision for me. What >people with CFIDS are lacking, in all areas, is options. I think the role of >leadership in this community should be to work together to grant people MORE >OPTIONS. If there's one thing all of us should know from this experience, >it's that we can't generalize our experiences. Cheney was touting Immunocal. > I took it and it made me much sicker. What helps some causes adverse >affects for others. We all know this. This is why we so desperately need to >make individual choices. > >Peggy > >>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 November 1, 1999 Report Share Posted November 1, 1999 Gail- Good for you. At 06:48 PM 11/1/99 -0500, you wrote: >From: GAILRONDA@... > >In a message dated 11/1/99 4:58:15 PM Eastern Standard Time, >Peggomatic@... writes: > ><< > You make some interesting points, but can you really claim to be >representing > patients by throwing another wrench into the wheel of a company and a drug > testing process that has been in the works since 1983? >> >Peggy, do you really think I have the ability to stop the drug or cause it to >be fast-tracked? The information was from patients who had the experiences >and are still suffering today. The company is supposed to say nothing about >the drug and make no claims until it has been approved. Some of this >information comes directly from the FDA and the company has been warned >repeatedly but only stopped for two years. I feel the patient should be able >to hear all sides and make up their own minds. Instead, they have spread >lies and rumors. They even did this to one patient who is deceased, which is >the lowest, in my opinion, one can go, claiming that this woman was depressed >before she took Ampligen. Even her own doctor stood up to dispute that one. >Many patients do want all the facts. Some do not. For those that want to >hear the truth, I will continue to print it as well as to print others that >tell the truth. In the same issue as this article was one from Jay >Goldstein, M.D., another from Hillary , author of Osler's Web (and >many did not like the truths she told in that book as well) and many others. >But don't think a large company feels threated by me telling the truth. It >isn't true. >Gail > >>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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