Guest guest Posted January 22, 2002 Report Share Posted January 22, 2002 Hi Mark, It is in Fountain Valley, CA. It was emailed to me from the CFS support group leader in Long Beach, CA,. Al > Where is Fountian Valley Hospital ? > > How did you here about the trial ? > > Ampligen > > > > > > Members > > > > I recently found out that Fountain Valley Hospital is doing a study on > > CFS patients using Ampligen. > > > > It is cost free and have favorable results in prior testings. > > > > If interested, contact at 714-751-5800 x-35. I would appreciate > > feedback, if anybody pursues this study. > > > > See you at the next meeting. > > > > Larry Ridenour > > CFS/FM Support Group > > Long Beach, Ca > > http://community.webtv.net/cfsfmlobeca/WELCOME > > > > > > 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 January 22, 2002 Report Share Posted January 22, 2002 Where is Fountian Valley Hospital ? How did you here about the trial ? Ampligen > > Members > > I recently found out that Fountain Valley Hospital is doing a study on > CFS patients using Ampligen. > > It is cost free and have favorable results in prior testings. > > If interested, contact at 714-751-5800 x-35. I would appreciate > feedback, if anybody pursues this study. > > See you at the next meeting. > > Larry Ridenour > CFS/FM Support Group > Long Beach, Ca > http://community.webtv.net/cfsfmlobeca/WELCOME > 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 January 23, 2002 Report Share Posted January 23, 2002 Dear Al Mellilo, What do you think about Ampligen? Do you think this eventually can provide a cure for CFS patients? Best wishes, s Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 5, 2002 Report Share Posted June 5, 2002 Hi . Please feel free to tell us all you know about ampligen. How do we get information about the new trials? Do you know of anyone who has improved on ampligen? I don't think anyone on the list is against talking about it. I would love to hear some good news about ampligen. Tom Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 6, 2002 Report Share Posted June 6, 2002 > With a new study beginining in utah and other places; why is thier no > discussion on ampligen on this list. Because the moderator of this list, Ken Lassessen, asked members not to discuss ampligen on this list. He set up a separate list specifically to discuss ampligen. To check the ampligen list out, go to groups home page and type in the word ampligen in the search box. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2002 Report Share Posted June 7, 2002 Beck..me too..groping in the dark.. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 With all due respect to the hosts of this listserv, I believe we ought to give Ampligen-related discussion another try, now that we have some distance from our previous experience on the subject... And of course if the discussion begins to dominate or get nasty we'll just pull the plug! Would that be alright, Moderator? 8^! -- Hud (8 >{D) hudr@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Dear Peggy, You wrote, " I understand that a lot of people consider Ampligen " controversial, " but it seems to me that it should not be banned from discussion on this list if people are talking about it in a medical, and not political, way. I think the ban is ridiculous, considering that no other treatments are banned from discussion here.... I agree. Sue B. upstate New York Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2002 Report Share Posted June 8, 2002 Hello B., Ampligen is certainly a valid topic for discussion. But, if you read Ken's message, you will see that a separate list has been set up for it. You wouldn't believe the acrimony that the thread caused on this list. It went on for days and people were calling each other names and creating havoc. I would encourage you or anyone to again take the discussion to the list that Ken has set up. I am hopeful that it will be a good treatment for many of us. Mike > Ken: I have total respect for your wishes and your lists. <<<snip<<<< > I find it inconceivable that the ONLY drug in Phase III trials and > truly treats this DD is banned from discussion on any list.<<snip<< Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2003 Report Share Posted February 25, 2003 > Clay: In response to your post.....I am currently on Ampligen and > have been for about 15 months. Ampligen works for me and has for > many > others at our site...Incline Village (Dr. ). It has had a > tremendous success rate. My hope is that it is approved by the FDA, > once all the data is in, and it be made available to all. For many of > us it has been a total miracle. It was, indeed, a shock to me, as I > didn't expect such dramatic improvement. I went into this just > hoping > for whatever improvement I could get......it's been much more than > expected. > Thanks for your reply, it is so encouraging to hear stories like yours. Did you have the severe brainfog?? Or cognitive impairment? Were you on the second trials? or did you get on Ampligen and do you have to pay for it at the moment?? I have thoughts of goin to Canada, because they say it may be another year and a half before FDA may approve it in the US. It sounds promising, but along time to wait:( Did you also have upregulated RnaseL activity and what was it if you remember and did it bring it down? Sorry for all the questions, just want to know alot about the drug and have never talked to anyone that is on it. Its so nice to have you here... Thanks Again, Clay PS: May I email you? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2003 Report Share Posted February 26, 2003 Hi , Could you please email me your email address, if that is alright with you... I would like to duscuss some issues on Ampligen and so forth. Thanks so much for your time. Clay cbeck32@... > Clay: In response to your post.....I am currently on Ampligen and > have been for about 15 months. Ampligen works for me and has for > many > others at our site...Incline Village (Dr. ). It has had a > tremendous success rate. My hope is that it is approved by the FDA, > once all the data is in, and it be made available to all. For many of > us it has been a total miracle. It was, indeed, a shock to me, as I > didn't expect such dramatic improvement. I went into this just > hoping > for whatever improvement I could get......it's been much more than > expected. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 3, 2003 Report Share Posted March 3, 2003 hi, as an old timer with this illness and on and off this list for awhile plus having been around for some of the earlier patient trials in the mid /late 1990s( soley fianced by the patients ) and aware of the even earlier trails in the 1980s by a few early cfids mds ( stoppped due to liver promblems if i rmember correctly) ampligen has been a miracle for some cfids patinets and a total diasaster for others leaving them worse off than before , with immense intractable pain..The orginal patient who had it is still very sick depsite the companys public realtions effort to contiune to say they are well. dr demeilier has a conflcit of interest with treating and beinc fiancially connected to the company that makes apmligen. hemispherx which makes the ampligen has charged patients thousands of dollars to particpate in drug studies for the fda required testing phases ,, when usually a drug company solicits patients and provides the drug to be tested in the phase 1 , phase 2 etc fda trails free of charge as well as the lab tests needed are free versus hemispherx charged patients for the ampligen and testing was self pay.. furthermore, patients were promised in some of the trails by hemispherx that for part of the time they would be on ampligen and the rest of the time on placebo but the company didnt honor what they promised the patients ... Some of the spokes people for how wonderful ampligen is have relarives who work for the company and if they did as they were told kept receiving the ampligen..The company has had major finaccial promblmes and on dr cheneys oct 2002 tape he mentioned something to the effet that 2003 would be a deciding year wheather hemispherx would survive financially. The aids community has been offereed it also . in the past one month, i have had four friends who are well ;non cifds call me aobut a miracle cfids drug to cure me called ampligen that has appeared on the nitely news without any balance in reproting of the negative promblems with some patients and the finanical promblems the company has had. my two cents. somish. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 4, 2003 Report Share Posted March 4, 2003 May I suggest, if nobody has done so yet, that we do stick to personal experiences re: Ampligen (as interesting as the politics are) just so that we can keep it a viable topic on this list and not have it be banned as a topic again? I am always interested to hear personal stories, positive or negative, about Ampligen, and want them to be allowed on this list. Peggy ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ Stricken: Voices from the Hidden Epidemic of Chronic Fatigue Syndrome: http://www.angelfire.com/ri/strickenbk Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 15, 2003 Report Share Posted July 15, 2003 I thought Apligen was off the market for some time now.. ampligen Have we discussed Ampligen here yet? if so, just point me to the old postings .. doris Responsibility for the content of this message lies strictly with the original author, and is not necessarily endorsed by or the opinion of the Research Institute. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2003 Report Share Posted July 21, 2003 Doris, I don't recall ampligen postings here but a good place to read about it is the book Osler's Web by . mary n Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 10, 2003 Report Share Posted August 10, 2003 nne, I just know that Ampligen has questionnable efficacy from what I've read. I once asked Dr. G. if he thought that my brother, who has CFIDS, should go up to Canada to try it, and he said no. The historical controversy is discussed in an excellent book, Osler's Web: Untangling the ______ of Chronic Fatigue Syndrome by . mary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 cindy i would definitely post this question over at the Ampligen group: CFS-Ampligen/ there are many people over there that have reported a big benefit from Ampligen. It's really hard to say at this point for sure. have you thought about trying to get the Low Molecular Weight RnaseL test done in Belgium. Some say that if you test positive on this test you are more likely to benefit from Ampligen. here is the web site for the lab: http://www.redlabs.com/en/index.html they have info on how to send a sample etc...on the site, but you'll need a DR to order the test for you. also, are you sure that you would have to travel to Chicago to get in the trial? i think there is a DR in NJ who is also working with Ampligen. Dr Podell (i know absolutely nothing about this DR, maybe someone else here has seen him) http://www.drpodell.org/ thanks bill PS - definitely post this question over at the Ampligen group. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 To repeat what winsomme offered Click on " Home " on the left-hand side of the page for this group There you will see a link " CFS-Ampligen " for another group In brief, afaik, the presence of of a low protein 37 kDn - normally 80 kDn in normal controls - was thought to be a clinical marker for potential benefit from Ampligen. In recent months, who actually benefits from Ampligen vs those that don't has become even less clear - and was unclear from the start. The other posters on " CFS-Ampligen " know way more technically than I do about it When the trials are completed, may be more info will be had. One of the goals, I would think, is to be able to determine good potential candidates - PWCs that would respond well to Ampligen. But realize that even well-established drugs don't help everyone with other diseases There is a the Podell CFS center in NJ, IIRC, and there used to be a Dr. King administering the Amp program (she is either with Dr. Podell or is at another NJ location - I can't remember) I believe Ampligen will work for a subset of us Some of us are extremely ill w/this DD - hospitalized, bedridden, housebound, in wheelchairs, etc. Like many diseases, it can be mild to severe. Even in moderate form, dis-ease/discomfort level can be very high - hang in there Lance > I was wondering if anyone had participated in any of the ampligen trials or > had otherwise had the drug administered to them. I've read some of the > literature as to the results of this treatment and have discussed it with a > few of the doctors administering it and am very perplexed as to how to > proceed especially considering what it costs and the logistics of having to > go to Chicago once a week for six months from New York. And although FDA > approval is expected in about a year, from what I've read and been told, the > results are very mixed. I am at the end of my rope, however, and so would > greatly appreciate any feedback on this. > > Thanks a lot. > > > M. Fox, Esq. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 p.s. there are other ttmt to try. is a mixed bag. search this group and google. some PWCs get somewhat better. others get sicker trying things, or find no improvement at all, while depleting their finances (nominal for some of us) Lance Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 2, 2004 Report Share Posted April 2, 2004 Hi , There's a long-running listserve for Ampligen. It includes people who have taken Ampligen--both those who have had good experiences and those who have had bad experiences. It also includes people who just want to learn about it. The moderator is excellent. CFS-Ampligen At this point, it would probably be better for you to join an Ampligen list than to try to discuss it on this list. Best, Sue B., Upstate New York ============== Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 " > The upside of the patient populations experimentations over the > years with Teitalbaum, Goldstein and I also think its fair to > include Ampligen as well as numerous other vanquished protocols is > to recognize these essential failures as such. This recognition > allows for clearer insight, understanding and a more sober focus to > bare on current and future treatment suggestions. " > > Have you not seen the recent results of the Ampligen Phase III study? > They are quite impressive. > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 http://biz./bw/040503/35403_1.html Monday May 3, 8:02 am ET Patients Receiving Ampligen Improve at Twice the Level Considered Medically Significant TUCSON, Ariz.--(BUSINESS WIRE)--May 3, 2004-- Hemispherx Biopharma, Inc. (AMEX: HEB - News) announced today that its pivotal Phase III Chronic Fatigue Syndrome (CFS) trial of Ampligen met its primary endpoint with patients receiving Ampligen for 40 weeks. A statistically significant increase (p=0.022) in patients' physical performance as measured by Treadmill Exercise Tolerance Testing (ETT) was found, compared to placebo. Ampligen represents one of a new class of drugs called dsRNA drugs for the potential treatment of CFS that afflict more than 500,000 people in the United States. Following peer review, the Ampligen study will be presented today at the 17th International Conference on Antiviral Research, held in Tucson, Arizona, in Oral Session II. ADVERTISEMENT " We are very pleased to report these new results from the pivotal CFS trial with Ampligen. This study is particularly important because CFS is currently only treated symptomatically as there is as yet no FDA approved therapy, " said Dr. A. , Chief Executive Officer of Hemispherx Biopharma. " With this data, we now focus on the preparation of new drug applications nationally and internationally. We expect that these results will generate significant interest from the pharmaceutical industry. " Study Design The reported new clinical study is a well controlled, multi-center, double-blind, randomized, placebo-controlled Phase III pivotal study of the efficacy and safety of the experimental agent Ampligen, given 400 mg twice weekly, versus placebo in patients with severely debilitating CFS. The clinical trial randomized 234 patients at 12 centers across the U.S. to assess the effects of 40 weeks of treatment with Ampligen in patients suffering from CFS. The prospectively defined primary endpoint was improved physical performance as measured by Treadmill Exercise Tolerance Testing (ETT): Duration. Efficacy may be established by showing a medically significant increase (greater than or equal to 6.5%) in mean exercise duration (baseline compared to week 40) that is statistically significant (p less than or equal to 0.05) using a statistical method termed " analysis of covariance " . The Ampligen clinical study design was previously reviewed by a specially convened panel of the FDA's Antiviral Advisory Committee, and the case definition of CFS was developed and recommended by the U.S. Center for Disease Control and Prevention (CDC). Study Results Patients receiving Ampligen for 40 weeks improved exercise treadmill performance 19.4% vs. 5.1% in the placebo group (p=0.022, analysis of covariance with baseline as covariate). An " intent to treat " analysis included patients who completed less than 40 weeks. Similar results were obtained with 17.7% improvement in exercise treadmill duration in the Ampligen cohort compared to 4.3% in patients receiving the placebo (p=0.047). Improvements in exercise treadmill duration in the patients receiving Ampligen compared to placebo were greater than twice the minimum considered medically significant (6.5%). Moreover, there was no significant difference in the number of serious adverse events, missed dosages or dropouts (i.e., leaving the study prematurely) among patients receiving Ampligen vs. those receiving placebo, suggesting that the experimental drug was generally well tolerated. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2004 Report Share Posted May 10, 2004 honestly, i don't really know what to think about Ampligen. i guess we will just have to wait and see. thanks bill Quote Link to comment Share on other sites More sharing options...
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