tag:blogger.com,1999:blog-1078685116296921818.post4350398654283043928..comments2023-04-26T09:15:19.142-04:00Comments on CFS Central: 2011 Open-Label Ampligen TrialMindy Kiteihttp://www.blogger.com/profile/12570126270241201680noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-1078685116296921818.post-36955135199147154962013-05-17T14:49:46.302-04:002013-05-17T14:49:46.302-04:00Well, given the dodgy business practices at Biosph...Well, given the dodgy business practices at Biospherx, it would seem that having human guinea pigs bear the costs of an experimental treatment would help the company provide even higher unwarranted bonuses to its executives.<br /><br />As it turns out though, even a large profitable company, La Roche/Genentech, has the same set for their Rituxan open label trials. Well, if things go badly we can Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-69053878377019903032012-02-16T16:23:49.049-05:002012-02-16T16:23:49.049-05:00Patients enrolled in the trial are paying a portio...Patients enrolled in the trial are paying a portion of the actual cost of the drug. I do not believe that this small drug company is trying to take advantage of the patients enrolled in the trial- quite the contrary. The big pharma companies could afford a free trial, but this is a very small company asking patients to help offset the cost. My son is enrolled in the trial- we are glad to have theAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-10224662476469209282012-01-30T00:35:06.469-05:002012-01-30T00:35:06.469-05:00Hi I agree that the costs of the Ampligen trial ar...Hi I agree that the costs of the Ampligen trial are high and many people who would like to try it will miss out HOWEVER we will all benefit from the research and information gained by those who can afford to trialling this drug.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-29577431208908105612011-12-01T08:39:55.655-05:002011-12-01T08:39:55.655-05:00Hey guys. I can tell you that I also went to the ...Hey guys. I can tell you that I also went to the Fibro & Fatigue Center in Stamford (by the way they are closed now). I went 3 years ago when you could pay-as-you-went. However, when they asked me for $6,000 my questions was "but you've already got me on a protocol which I see the doctor every six months so why more?" Then a a few months later they closed their doors. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-29353800907762337842011-04-05T12:26:40.135-04:002011-04-05T12:26:40.135-04:00Ridiculous price.
I went to the Fatigue Center ye...Ridiculous price.<br /><br />I went to the Fatigue Center yesterday. Yes, their cost is $6,000, plus another $2,000 in meds, as they mentioned. I was debating whether I should sign up until I read your post.<br /><br />MickeyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-47900200770603572542011-04-02T15:31:12.097-04:002011-04-02T15:31:12.097-04:00Those of us who truly need this drug are the sever...Those of us who truly need this drug are the severely ill who are on disability and who cannot possibly afford to participate in this trial, never mind the time it requires!!!<br /><br />GinaAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-20423651868177363992011-03-17T06:26:17.677-04:002011-03-17T06:26:17.677-04:00The big name doctors are joining the trial of Ampl...The big name doctors are joining the trial of Ampligen.<br />Dr Charles Lapp in Carolina, Dr Derek Enlander in New York, Dr Lucinda Bateman in Salt Lake City, Dr Klimas in Miami, and Dr Peterson in Reno.<br />After spending $6,000 for useless therapy at the FATIGUE CENTER in Connecticut I am joining this trial. The Fatigue Center made me pay $6,000 upfront for ineffective drips on a Teitlebaum Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-58658786464163460462011-02-28T10:40:08.611-05:002011-02-28T10:40:08.611-05:00The drugs is quite expensive then there are other ...The drugs is quite expensive then there are other cost that we have to payNioxin Reviewshttp://www.thinninghairwomenhq.com/nioxin-cleanser-system-2noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-89621211709157072882011-01-30T07:57:35.795-05:002011-01-30T07:57:35.795-05:00i would not touch that drug with a 10 foot pole......i would not touch that drug with a 10 foot pole...they use patients and then they dump them...a very untrustworthy company...i hope they never ever get to market...nancy kaiser was first cfids patient on it and she is dead today...also the inventor of the fax machine was one of the biggest investors in ampligen who had cancer and used the drug...he also is dead today...ampligen is a waste of timeaidan walshnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-64874957663923318892011-01-28T20:19:11.869-05:002011-01-28T20:19:11.869-05:00I am happy that Dr. Bateman is looking into the op...I am happy that Dr. Bateman is looking into the option of providing Ampligen. It gets the drug to those who can afford it and accumulates more data that will hopefully lead to FDA approval some day. we've been waiting for how many decades? I wish it were offered in Colorado. If it were I would pay.Justin Reillynoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-68097822687212162832011-01-13T12:07:11.401-05:002011-01-13T12:07:11.401-05:00I take 10,000 mcg of b12 for energy... its like a ...I take 10,000 mcg of b12 for energy... its like a b12 shot<br />1 b100 vitamin ..... b's for health and immune support <br />D-Ribose powder to help mitochondrial function 5grams 3x before meals<br />Acety-l-carnitine 1000 mg free form 2x daily for increased memory function<br />120 mg co-q-10 2x daily for joint pain<br />I do better with these vitamins by 30% I would say.<br />I have found aAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-20751244842842971162011-01-01T15:44:49.262-05:002011-01-01T15:44:49.262-05:00This study has such huge energy requirements- they...This study has such huge energy requirements- they will never include the sickest of us. Such a schedule would probably literally kill me.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-44881411351725178982010-12-02T02:18:15.173-05:002010-12-02T02:18:15.173-05:00Besides the Prohibitive cost. If a patient that h...Besides the Prohibitive cost. If a patient that has me/cfs and is disabled how and the... are they going to be able to keep up with this schedule. Wow, is all i can say. My wife sleeps 16- 22 hrs a day and physically gets sick if not given that. I think its great somebody is trying something. Unfortunately due to my wife's totally devastating disease ME/CFS we have lost almost everythingAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-68125126272698836062010-11-28T23:33:51.448-05:002010-11-28T23:33:51.448-05:00I had no idea subjects ever had to pay for the med...I had no idea subjects ever had to pay for the meds in clinical trials. I'm glad the research is moving forward, but ... wow.cinderkeyshttps://www.blogger.com/profile/01578961959712679966noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-3437330546841899872010-11-21T14:22:45.831-05:002010-11-21T14:22:45.831-05:00who can afford that?who can afford that?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-72511226440532694942010-11-21T04:26:56.522-05:002010-11-21T04:26:56.522-05:00The staff at the FCC realizes that the cost is pro...The staff at the FCC realizes that the cost is prohibitive for nearly all CFS patients. In blinded studies (as opposed to open-label studies) the pharmaceutical company picks up the cost of the trial and compensates the researcher. Hemispheryx dose not appear to be covering any of the costs in this "trial."<br /><br />As of last week, the FCC had yet to determine whether or not there Shane Carlsonnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-65000950045220567262010-11-20T19:26:09.828-05:002010-11-20T19:26:09.828-05:00The cost is disappointing but remember this is a t...The cost is disappointing but remember this is a trial and lots of people don't get to take part in trials for all sorts of reasons (no researchers in my area). <br /><br />But with enough results, perhaps treatments may become more widely available. <br /><br />Trials may be free in Canada but there is no Ampligen trial there that I know of - a trial like this is better than none on some Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-15094723001085570612010-11-20T16:09:15.191-05:002010-11-20T16:09:15.191-05:00Has the formula for ampligen been changed?Has the formula for ampligen been changed?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-54474251231065974292010-11-19T22:10:30.800-05:002010-11-19T22:10:30.800-05:00Clinical trials are free in Canada. That is especi...Clinical trials are free in Canada. That is especially if you are a cancer patient, a HIV or arthritis patient. Otherwise, there is nothing for CFS. Not even a doctor.Anonymoushttps://www.blogger.com/profile/12281551619335996831noreply@blogger.comtag:blogger.com,1999:blog-1078685116296921818.post-25766815701137674972010-11-19T19:44:29.426-05:002010-11-19T19:44:29.426-05:00I am absolutely astonished at the cost of this cli...I am absolutely astonished at the cost of this clinical trial. It appears health is divided between the rich and the poor in the United States. How insulting after all the years of negelct of diasabled patients...<br /><br />Maybe we should campiagn for equal access to research and treatment for ME patients around the world. I am so depressed by the inequality built into this trial I can't beAnonymousnoreply@blogger.com