Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 In a message dated 1/11/00 1:00:13 PM Eastern Standard Time, Aglady1@... writes: << In her newsletter, Gail Kansky has reported that I was directed by Hemispherx to put on the workshop, and that Hemispherx also directed me to select only those patients who had had positive experiences. She has accused the patients at Incline Village of being shills and promoters for HEB. She called us " Stepford wives " (inferring very blatantly that we were brainwashed by Hemispherx and blindly following their orders). She has accused us of not caring about anyone whose experience with Ampligen was less than positive. Gail presented this cascade of lies and gossip as truths. Her accusations against me are false, as are many of the " facts " she has presented (511 and 516 patients at the Incline Village site never have gotten Ampligen 3 times a week). >> Why bother to continue to answer these protestations and the long, long post from ? But I will offer two points only that have already been on this list. 1. 's knowledge of the newletter's accounts are from ONE article written by another patient that was in a free copy she picked up at the conference and NOT written by me, but another Ampligen patient. 2. was voted in as leader of the CAB formation and duly voted out by a majority of patients weeks later, but would not respond nor step down. Without a promise of the patient coming first, the CAB formation dissolved. Neutral parties would not accept only officers that were Ampligen patients setting up the rules. Ther is not a CAB presently. A CAB must not be made up solely by those whom have had contact with the company. According to the CAB sturcture, the FDA will not recognize this unless neutral parties are welcomed. Hope this ends it, but I have serious doubts! And I thought the presidential campaign was full of rhetoric!! Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 1. 's knowledge of the newletter's accounts are from ONE article written by another patient that was in a free copy she picked up at the conference and NOT written by me, but another Ampligen patient. 2. was voted in as leader of the CAB formation and duly voted out by a majority of patients weeks later, but would not respond nor step down. Without a promise of the patient coming first, the CAB formation dissolved. Neutral parties would not accept only officers that were Ampligen patients setting up the rules. Ther is not a CAB presently. A CAB must not be made up solely by those whom have had contact with the company. According to the CAB sturcture, the FDA will not recognize this unless neutral parties are welcomed. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 In a message dated 1/11/00 3:03:59 PM Eastern Standard Time, mgrahn@... writes: << ts obvious what is happening here is that a faction of people (don't have to name names) is out to destroy the drug Ampligen and the company that makes it Hemispherx. The " folks " taking Ampligen are merely trying to defend themselves from these personal attacks and threat >> Marcia, from one of the ones on one side, you couldn't be more in error. Those that offerred their time, despite this illness, to forming a group that would help to get it FDA approved and yet had no personal interest in the drug but wanted what was doing some good to available without harming any patient have no reason to destroy anything, either personally, monetarily, or ethically. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 >From: berry@... > >I thought that flaming Ampligen stuff was " outlawed " at this list? I thought flamming was " outlawed " period - so what the heck is the Ampligen folks do to each other every day ???? Enough - No WAY More Than Enough Already !! Its obvious what is happening here is that a faction of people (don't have to name names) is out to destroy the drug Ampligen and the company that makes it Hemispherx. The " folks " taking Ampligen are merely trying to defend themselves from these personal attacks and threats to have the drug that is literally giving them their lives back taken away from them forever. You will note that none of these people are trying to get anyone else to take Ampligen, they are just fighting for their rights to continue to have their treatment choices and continue the drug that is saving them. Think of how you would all feel if someone were threatening to take away your supply of the lifeblood that keeps you or your loved ones going. These patients are in Ampligen studies, just that. This is all under study right now....someday if we allow these trials to continue without further harassment we may all benefit from Ampligen, or somthing that evolves out of Ampligen when more is known or from something that is learned in these very trials. That is what studies are for, to study the drug, dosages, effects, testing, benefits, side effects, etc. We have already learned from those first volunteers that the drug does not work for everybody. It seems to work most effectively for those with the RnaseL defect. That narrows it to a subset of CFS patients. Others of us will fit in to other subsets and need to find our answers in other areas. We will all have to do our own thinking here and back it up with research and not with vague inuendos, personal attacks, stories of people who talked to people who knew someone....etc., etc. We need hard research before making a choice to consider trying Ampligen. Which is a moot point at this stage for most of us anyway, because of the expense of the drug, and the logistics of the trials. But the bottom line is we will never find a cure for what we have if we do not allow the research to take place unhindered and refrain from attacking already very sick patients for their treatment choices, or their willingness to participate in drug trials. We all want and need that same right. Marcia Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 In a message dated 1/11/00 4:01:00 PM Central Standard Time, GAILRONDA@... writes: << Subj: Re: Ampligen Date: 1/11/00 4:01:00 PM Central Standard Time From: GAILRONDA@... Reply-to: onelist onelist From: GAILRONDA@... In a message dated 1/11/00 3:03:59 PM Eastern Standard Time, mgrahn@... writes: << ts obvious what is happening here is that a faction of people (don't have to name names) is out to destroy the drug Ampligen and the company that makes it Hemispherx. The " folks " taking Ampligen are merely trying to defend themselves from these personal attacks and threat >> Marcia, from one of the ones on one side, you couldn't be more in error. Those that offerred their time, despite this illness, to forming a group that would help to get it FDA approved and yet had no personal interest in the drug but wanted what was doing some good to available without harming any patient have no reason to destroy anything, either personally, monetarily, or ethically. Please tell us, Gail, when you decided to help get Ampligen FDA approved. Based on your vitriolic public track record regarding Ampligen and your condemnation of anyone who has shared a positive experience with it, I'm having a hard time understanding why and how you now see yourself as the Ampligen patient's Great White Hope. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2000 Report Share Posted January 11, 2000 , I am not Ampligen's " Great White Hope. " If demonstrated that it would help a patient and not harm them in any way, I would advocate for it as I would anything I feel would help. But not without proof and not without placing the patient first. I've said my last to who feels that one who makes sure sentences end with a period, etc. feels she knows more than a medical advisory board. I'll leave this as my last about this as well. The CAB formation process was begun without any patient that was on Ampligen. All the founding members of that group wanted what was best for the patient. Not only the patient on Ampligen, but all patients. We wanted the company to address problems we had been approached about. We wanted all major groups to have an opportunity to participate. Of all the groups asked the beginning, only one opted a wait and see attitude, The CFIDS Association of America. The others were willing to work and do their share. All the orginal founders except one (who was, by that time, working for Hemispherx) walked out when they felt the patients were not being represented. I was even offered a position of power to satisfy my ego. I did not leave with the original group. It was only after I was offered this position which I knew was wrong, did I join them. Since it was you offering me that position and I posted to the entire formation committee what had happened and why I was then joining the others, all of this serves no legitimate purpose. I have been acussed of working for Asensio, advocating another drug, having financial purposes,etc. None of this is true. I do not have to defend myself since I have taken the higher ground and have nothing to defend. If I felt Ampligen was the answer to our prayers, I would want my daughter to be on it. I would want it to be available to as many people who wanted it. And I would work toward that end. But the science does not support this. Hopefully, it will. In reality, it probably won't. Until that time, we don't know if the drug is actually harming a person in the long term or not. Until that time, I certainly wouldn't advise anyone to take it. I spoke tonight to Dave, another nonresponder to Ampligen from California who passed all RNaseL tests and was positive to everything they tested him for. He was on a double blind but didn't need any code to tell him what he was taking since he became so ill on it. Having taken plain saline in the past, he knew that would actually help him. Yet his Karnofsky scale is reported as having gone up. He never answered any question that would lead anyone to be able to even rate him on the scale. Untruthfulness bothers me. As with , I feel your posts are taking up valuable space on a list that is out here to help people. If you can't post on other things, please don't expect further answers from me and don't miscontrue my silence as agreement or otherwise. Gail Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 In a message dated 1/11/00 7:14:59 AM Eastern Standard Time, judithwisdom@... writes: << These are things reasonable people who cannot play around with their lives need to know. I >> Oh, yes, this prompted my memory about 's asumption that I did not lose a liver or a kidney. How do you know this ? I had mentioned elevated LFTs being tripled in a previous post. Someone had inquired as to what a LFT is......I'm sorry I did not explain fully. LFTs are Liver Function Tests that measure how well it is working as an organ to filter the blood, as it can also measure the blood clotting times. I am sorry to say that mine are not normal now. This I do know first hand and this I know as a Medical Sonographer. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 In a message dated 1/11/00 5:01:11 PM Eastern Standard Time, GAILRONDA@... writes: << Marcia, from one of the ones on one side, you couldn't be more in error. Those that offerred their time, despite this illness, to forming a group that would help to get it FDA approved and yet had no personal interest in the drug but wanted what was doing some good to available without harming any patient have no reason to destroy anything, either personally, monetarily, or ethically. Gail >> Couldn't have said it better. I do belive that mood altering drugs may be causing some to mis read or mis quote. Please don't take this personally, as this is the exact name for the majority of the drugs we take to alleviate symptoms. As Imentioned earlier, with the assistance of my wonderful interinst, I came off of MS Contin, Neurontin, Klonnipin and Soma, which are all mood altering drugs. They helped me tremendously after and during ampligen but did not want to become a zombie with a destroyed liver. Blame it on PMS, if you must attack me now. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2000 Report Share Posted January 12, 2000 , Are you willing to tell all about Trudy Rink's experience when she was the contact for all perspective CAB members? Please, I'm not trying to put you on the spot...understand this. But, the sweetest person I've ever talked to, Trudy, had to endure suicide threats, while there was infighting factions. The threats were from both sides of the fence. They came from those who could not afford it and from those who were sicker for the experience. Isn't this the most important reason to get the CAB running? Patients do need a reliable source for answers. They need the ADVERSE REACTIONS COMMITTEE with the 800 number that was in the planning stages. We had many volunteer to man it as an impartial person, including me. My only motive has been to see ampligen safely fast tracked. Cheryl Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2000 Report Share Posted January 16, 2000 HI, Thank you for this feedback! Christie At 03:43 AM 1/13/00 -0000, you wrote: >From: linda@... > >WOW, guess this might be a bad time to post to this >board. I recently moved from Reno to New Orleans >and have been out of touch until just recently. >Finally back online and able to catch up on what's >going on. Still unpacking. > >I started Ampligen in Dec 97, one of the first >group of five at the Incline Village site. I did >extremely well, although a slow responder. I >was unable to continue infusions past the 18 month >mark due to finances. I was terrified going off the >drug since I had read so many horror stories. I am >pleased to say that nothing awful has happened to >me and I am still doing remarkably well. I am truly >amazed at what I have been able to accomplish, day >after day of unpacking, lifting, truly a tremendous >amount of physical activity, probably the most in >many years. After reading all the " bad press " , just >thought that many of you would be interested to >hear from someone who had a significant response, >went off the drug and continues to do well. > >I recently privately emailed Cheryl, just to keep in >touch and am terribly saddened for the people who >did not have a good experience. Cheryl, my heart >goes out to you....I think of you often and am >still carrying around the bookmark you sent me. >Best wishes to you in your upcoming surgery, I'll >be thinking of you. I'm having trouble re-reading >this post....it appears to be cut up, also the >email address showing on my screen is incorrect, >I tried to correct it...it is lindab@.... >It would be nice if we could all share our successes >AND failures with one another and not have to fear >attack, wouldn't it? > > >--------------------------- Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 I wasn't around for the Ampligen debates.......what is the general concensus about Ampligen on this list? Has it helped people? LIsa Re: Re: HHV6 group > > >Interesting; this was before my time. > > > >Al Melillo wrote: > > > >> Hi Debbie, > >> That HHV-6 group was started by Schweitzer who runs the Sasyfras CFS > >> chat list also. 's on Ampligen and was kicked off this list when it was > >> moderated by Clements. you might remember those heated Ampligen > >> arguments in that era of this list. > >> Al > Those arguments are engraved in my brain - still gives me nightmares! > Christie > > > ------------------------------------------------------------------------ > Failed tests, classes skipped, forgotten locker combinations. > Remember the good 'ol days > 1/4053/4/_/531724/_/959914939/ > ------------------------------------------------------------------------ > > 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 June 2, 2000 Report Share Posted June 2, 2000 The history is in the archives... CFS_Ampligen is a list dedicated to it only (created to more the discussion elsewhere) My personal take: * Works only for those with specific clinicial test results * High Risk - long term side effects are unknown * High Cost ------------------------- I would consider it ONLY in the following situation: * Hemex anticoagulation fails * Antibiotics fail * Anti-virials fail * RNase-L test results indicates that I am a candidate * I'm deteriorating despite everything (low or moderate risk) else ----------------------------- Ken Lassesen 2 @ 2 ft PWC, 2 @ 4ft PWC2 ft PWC: http://www.folkarts.com/idef/4 ft PWC: http://corgi.folkarts.com/Fax: (520) 832-6836 ICQ #: 2122097 (also Netmeeting with Video) Re: Re: ampligen I wasn't around for the Ampligen debates.......what is the general concensusabout Ampligen on this list? Has it helped people?LIsa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 2, 2000 Report Share Posted June 2, 2000 I agree with Ken. Our list member, Gail Kansky, president of the National CFIDS Foundation has more the Ampligen dangers on her web site at www.ncf-net.org under newsletter I believe. Al Re: Re: ampligen I wasn't around for the Ampligen debates.......what is the general concensusabout Ampligen on this list? Has it helped people?LIsa I want to find: govt. job listings govt. auction listings email for govt. officials govt. agency web sites 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 August 7, 2000 Report Share Posted August 7, 2000 Hi , For some info an Ampligen, go to the National CFIDS foundation website, www.ncf-net.org and select Newsletter from the list and check all past issues, there some articles on Ampligen indicating where it's going. Al Ampligen > I was reading some of Burns Osler's Web excerpts from Hillary 's > book. Amazing the complex and horrific web that has been woven about this > drug with the CDC and all. The politics, etc. I still haven't read enough to > know the full story. > > Anyway, the reason I am writing is to ask this - Does anyone out there > understand where Ampligen is currently in the scheme of things? I know there > is testing going on in different parts of the US. I also know a little about > the Sensio-Hemespherx battles. I'm just curious where it's going. What are > the possible outcomes of the current step and then what is the next step? > > Please no Ampligen fights, just some solid info would be great, and I'm sure > other members of the list would be interested. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Steve, Not true. Length of illness is not the most important crietria in determining Ampligen efficacy. It's the RNase L defect. Some feel the too criteria go hand-in-hand, but not necessarily. There have been some good responders from those being sick 10+ years. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Ditto what Ken said about Ampligen and anyone considering this treatment should check out asensio.com web site. Asensio is a wall street firm that has done some research on hemispherix biopharma (or whatever they call themselves these days). Apparently, the people behind Ampligen have been involved in stock fraud before. In addition, they have been doing trials with dozens of physicians all over the country with this drug for years but never seem to be able to get thru FDA hoops. Dr. Jay Goldstein told me he wouldn't take Ampligen if he were dying. Cheney thinks it's beneficial early in the illness. I think the whole drug/manufacturer is a big stock scam. I believe they've continued to fund trial after trial for years to keep their stock price propped up, enabling insiders at the company to make money primarily through stock sales to the public. Last time I looked they had a $300 million market cap with no sales other than that which they charged some trial patients and little in the way of assets. Steve B. Ampligen > > As a further FYI: the effectiveness appears to require that the person has a significant RNase-L problem (which can (and should) be confirmed by lab tests at R.E.D.D. before starting ampligen) > > M Lassesen, M.S. > ex " Dr.Gui (MSDN) " , " Dr. VB " > cv: http://www.folkarts.com/kenl/ KenL@... > Phone: 360 297.4717 Cell: 360 509.8970 Fax 520 832.6836 > ----- Original Message ----- > From: R. Bullock > > My Groups | Main Page > > > Ampligen is really only effective (if you believe the limited and possibly > biased research claims) in the earlier stages of CFS. If you've had CFS 10+ > years it's highly unlikely you would benefit and you could put your health > in more danger by taking it. Some terrible side affects have been reported. > Steve B. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2000 Report Share Posted September 24, 2000 Jim, Your right. Some people are still in Cheney's Stage 1 after 10 years. To the best of my knowledge (I have considered joining one of the many ampligen studies in the past), they don't test patients for RNase.. beforehand, but I could be mistaken. Steve B. Re: Ampligen > > Steve, > > Not true. Length of illness is not the most important crietria in > determining Ampligen efficacy. It's the RNase L defect. Some feel the too > criteria go hand-in-hand, but not necessarily. > > There have been some good responders from those being sick 10+ years. > > Jim > > 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 September 24, 2000 Report Share Posted September 24, 2000 Steve, They do test for RNase L, but they do not use it to admit or reject test subjects in the 516 trial. They are still trying to make a correlation. As for Asensio, don't believe much from them. On Wall Street they are known as villains. They've been sued many times. They try to massage data (e.g. the prevalence of CFS) to make money from their recommended short sales. That to me is unethical and often illegal. That said, Hemispherix was negligent in making public claims about the effectiveness and safety prematurely. It has been frustrating that the Ampligen trials are taking so long, but lack of cash has been one major obstacle. Going public has allowed them to go ahead w/ trials. Hopefully in early 2002 they will be able to process all the data and send it to the FDA. Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 > Cheney thinks [Ampligen is] beneficial > early in the illness. Steve No offense, but have you discussed Ampligen with Cheney at length? I have. (Several years back, after I had tested positive for the defective RNase-L enzyme, Cheney and I discussed Ampligen at length.) To make a long story short, Cheney told me then that Ampligen was a good drug. He apparently still believes it is, because just this past April he told me that Ampligen is his first choice for treating Phase I patients. I do agree with Ken, though, that anyone considering Ampligen should confirm that their RNase-L is a significant problem. I believe Cheney would agree with this, too. Best, Sheri Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 I agree with you Steve. i was planning to enter the trial as well but was excluded (thank God) because my thyroid coud not stabilize. My health care practitioner said it was a blessing I did not get involved. many are getting very sick....I've decided Ampligen is an expensive, useless and dangerous waste of time..barbara Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 25, 2000 Report Share Posted September 25, 2000 Sheri, Cheney told me exactly what he told you. Another top CFS physician told me it was potentilly very dangerous. I considered entering trials performed 3 times over about a 2 year period in S. California. I went to the early seminars on the drug and filled out the paper work to enter but finally decided against it when they required I discontinue some of the medications I was currently taking and getting benefit from. Anyway, they created another e-group to discuss this subject and we're not supposed to discuss it on this e-group. This issue is like the abortion issue, people are either fervantly in favor or fervantly against it. Steve Bullock Re: Ampligen > > > > Cheney thinks [Ampligen is] beneficial > > early in the illness. > > Steve > No offense, but have you discussed Ampligen with Cheney at length? > I have. (Several years back, after I had tested positive for the > defective RNase-L enzyme, Cheney and I discussed Ampligen at > length.) To make a long story short, Cheney told me then that > Ampligen was a good drug. He apparently still believes it is, > because just this past April he told me that Ampligen is his first > choice for treating Phase I patients. > I do agree with Ken, though, that anyone considering Ampligen > should confirm that their RNase-L is a significant problem. I > believe Cheney would agree with this, too. > > Best, > Sheri > > > 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 September 25, 2000 Report Share Posted September 25, 2000 Barbara, I agree but we're not allowed to discuss " A " in this e-group. Steve Bullock Re: Re: Ampligen > > I agree with you Steve. i was planning to enter the trial as well but was > excluded (thank God) because my thyroid coud not stabilize. My health care > practitioner said it was a blessing I did not get involved. many are getting > very sick....I've decided Ampligen is an expensive, useless and dangerous > waste of time..barbara > > 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 December 22, 2000 Report Share Posted December 22, 2000 Try lowering the dose. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 22, 2000 Report Share Posted December 22, 2000 Hi Ellen, There is some info on Ampligen at www.ncf-net.org under the newsletter or conference section. Gail Kansky of the NCF reported that many patients are worse since trying Ampligen. Al Ampligen > Can someone give me information about Ampligen, my best friend is on a > 24 week treatment (just ended 9th week) and is having very severe side > effects, her doctor said they can last for 3 months. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 23, 2001 Report Share Posted December 23, 2001 s, very good question. However, Ampligen discussions got so heated (nasty) on this list, pro vs. con, that the moderators decided to 86 (not allow) the discussion of Ampligen *on this list*. I believe there was a special list set up for Ampligen discussion. Would someone would be so kind as to backchannel s with the location of the 'A' list? Mike > > Are there any news about Ampligen research? I think it has been tested in > patients, and some very serious researchers have been associated with the > Ampligen trials. Are there any news about this? > > Yours, > s Quote Link to comment Share on other sites More sharing options...
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