I first heard about GcMAF in the fall of 2009 and began asking about it. Not too many people either knew about it or wanted to talk about it. I read about it on various sites, primarily here and in this Bill Sardi article here.
I wrote a question on Prohealth board. Harmod's responses are of interest:http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1379980
Most people in CFS/ME have not heard of this compound. A couple of CFS doctors, one is the US and one in Europe, are using this compound in a very small group of patients. One of them recently reported a strong positive response in one XMRV positive patient and improvement in an additional nine or ten patients who have just started on it. The compound is considered to be relatively safe. The best formulation is said to come from Israel, presumably this company. A less expensive formulation is produced in Europe and is undergoing small experimental trials.
There is a good overview of this compound and its activity at /www.gcmaf.co.uk/info/
I wonder if this compound would have any activity against XMRV? Judy Mikovits was unaware of the existence of GcMAF until last week. Perhaps she can ask around about it?
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GcMAF sounds very promising, though I wonder if Dr. Yamamoto is exaggerating. Anyway, do you know who the doctors are that are using it--or do they wish to be anonymous? I was surprised to hear it was being used in ME/CFS/XMRV patients already, especially because I thought there was a shortage of this stuff and that it couldn't be sourced.
ReplyDeleteBeta glucan is supposed to activate macrophages too (along with boosting NK cell activity) although I'm sure not as well as GcMAF, especially when taken orally. I just started taking Transfer Point beta glucan, which is supposed to be one of the better brands, so we'll see how that goes.
Anyway, thank you for the update.
Teitelbaum is NOT a foremost expert on CFS. At best, he is another doctor taking advantage of patients who search for hope and never find anything more than that.
ReplyDeleteTotally agree on Teitelbaum *not* being a foremost expert.
ReplyDeleteI am seriously considering traveling to Belgium (from Asia) to see Kenny De Meirleir who everyone says is using it. Does anyone know any more about this??? I'd be so grateful for any help.
teitelbaum,hyde,de meirleir,peterson and all the other circus clowns try to come across as world researchers and they can hardly get out of their own beds...a total cfids circus with colorful clowns driving in circles in their small cars...meanwhile patients continue to die and be neglected...i would never let anyone besides the japanese scientist administer Gc MAF (GcMAUF)...now they will tell you that you will need another medicine with that for it to work and who says that de meirleir is using the exact substance that the japanese doctor used in aids...maybe once this quack administers this treatment then it could be highly likely it will not cure and when the real time comes to get the real medicine because one took this route then the real one will not help someone because the other one disrupted something in your immune system...i would wait until science is 100%...a lot of people are desperate which is understandable and tired of being seriously sick but science can sometimes be very wrong when it gets into the hands of quacks... also remember this also, azt causes aids...all hiv positive patients who refused azt did not go on to get aids... also the GcMAF protocol is also increase your daily water intake...is it really the Gc MAF or the water that does the trick...'chronic unintentional dehydration' could also be the cause of chronic illnesses today, also there is no proof whatsoever that hiv is a cause of aids and that is why i do not and will never ever believe in xmrv hype....sincerely, aidan walsh southampton, u.k. www.watercure.com www.watercure2.org god bless all of you who are sick....
ReplyDeleteI could not disagree more... I am a De Meirleir patient and he is anything but a "clown". How offensive.
ReplyDeleteand you will continue to be a patient of de meirleir...i am glad you do not think of him as a clown but let me know when the genius cures you and you stop being 'a patient'...in my eyes he is a clown of the big cfids circus...all his fancy tests that are completely useless and have no scientific merit...sincerely aidan walsh southampton, u.k. p.s. kenny 'd' clown...
ReplyDeletewhen will it be available in australia?
ReplyDeleteI have had cfs for over 25years.
ReplyDeleteIn 1997, I heard DeMeirleir was performing a R-Nasel test.This test was to ascertain whether someone was eligeble for Ampligen, at the time concidered a possible treatment for cfs.
I spent a fortune of my money,travelling to Belgium,get a one night B&B and cover the vast expense of the test and Demeirleirs personal fee. With no result.
I told DeMeirleir, I had CFS for over ten years at that time.What DeMeirleir should have told me,and what I did not know at the time,was that only people who have CFS for 5 years or less, stand a good chance of benefitting from Ampligen. Therefore, this moron performed the R-NASEL test on me, knowing full well, that my CFS profile was not compatible with meeting the criteria for the test.
I telephoned DeMeirleir at leat ten times after the test, and most of the time he was unavailable for comment. I felt like I was the pain in the azz for bothering him, when all I wanted was answers. Six months later, after stubborn perseverance, I did manage to get hold of him one day, and ask him if I was eligible for Ampligen based on the R-NASEL findings.
His answer was,maybe. It's up to you.
What a charlatan!!!!
I have had full blown CFS since 2004 and fibromyalgia since the 1980's. I am almost finished a full year on Ampligen and have had a positive response to it; not only in my level of functioning but in lower antibody levels to HHV6 & EBV. You may check my posts at the Phoenix Rising site under "Niall". So there is hope for you too.
Deletedear anonymous when there is no cure you just make tries or just stay with your disease and dont bother anybody but yourself (i do hate victimism, you are not the only sick perso in the planet with a disease and without a cure, most diseases have no cures)
ReplyDeletemaybe you might save a little more money, for the little you can do with the money if you are sick.....
It is sad that Doctors who are trying to help patients are defamed by anonymous writers. If you wish to defame someone put your name to it, Kenny deMeirleir is a well respected physician.
ReplyDeleteOn the Ampligen question there are five centers for the latest Ampligen FDA study. One in Florida,Utah,Nevada, North Carolina and New York. We are running the New York study. We do not know if "old" cases (over five years old) do not respond to Ampligen. so Kenny deMeirleir was not mistaken in his answer whether Ampligen would work. We do not use R-Nase as a predeterminant for entry in the study , which is open to patient 18 -70 years old.
A parallel study using GcMaf and Maf314 is also underway.
It is obvious that we have as yet not found a global cure for this disease, we are still searching.
Derek Enlander MD
New York
Thank you Dr. Enlander for your experience, intelligence and persistence in helping CFS sufferers like myself, and for your trying different treatments with our community. I heard you speak about 5 years ago at a conference I think you were hosting in NYC.
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