GcMAF trial

Jenny

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It looks as if further trials of GcMAF are planned for patients in Belgium, the Netherlands and the UK. I've been emailing them and the info I've got is rather confusing, but it may be worth contacting them if anyone is interested.

http://www.gcmaf.co.uk/info/

Jenny
 

Frank

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I've contacted them and said that i will probably know in july if i am XMRV positive, so they could test GcMAF on me. If this happens you'll surely hear from me.

The Dichloroacetate on the site i find very interesting as well.
 

acer2000

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Glad to hear.. I really hope the WPI does a trial with GcMAF on people that were in the original XMRV study as well. It sounds really promising! Please let us know if you try it.
 

Hope123

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I've seen it used primarily in the context of stimulating white blood cells in cancer patients who have undergone chemo and have a low count and thus are vulnerable to infections. It was viewed as a supportive treatment. But I have not heard it used as a potential treatment for cancer or other illnesses. However, this is not my area of knowledge. I would caution those who try this out to find out all the risks involved and to pay attention to who is funding or pushing the trial. When I saw it used previously, I remember it as a very expensive treatment.
 

Jenny

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Stone - I'm afraid all I know about this is that it stimulates or moderates the immune system and that Kenny de Merlier (sp?) is trying it.

I'm sure others know more.

Jenny
 

Frank

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Got a mail back from them
Dear all,

I'm sending this blind copy to all involved to protect your identity and to prevent myself from having to email everyone in person. (Possibly you have received a forwarded version).
Over the past few days we have received numerous inquiries from CFS / FM patients, probably because of this:

The word is out. Prof. Kenny DeMeirleir is running a trial with 10 people on GcMAF (posted on Cort's Forum). In addition 2 other people from your community we currently know of are trying GcMAF, one of them XMRV positive, the other one pending results of the XMRV test. Using GcMAF is not a miracle cure, eventhough it may be presented like one on the internet or by certain physicians. Patients (incl. cancer and hiv patients) who are currently using our GcMAF report varying experiences. Some struggle greatly with the effects of their suddenly reactvated immune function as their bodies are fighting off cancer or viruses now. There is data coming from a research project involving genetic issues that might tell us for whom exactly GcMAF will be a solution and who might need some additional treatment in order for GcMAF to work for them. In addition, we need to wait and see what the current GcMAF patients' experience will be before we distribute to people outside our area.


We fully understand that many of you have been suffering from these illnesses for decades and the kind of opposition, disbelief and insult you have received from the medical community and most likely from your family and friends as well. Many have injustly lost so much of their quality of life, some are left completely bedridden without help, some have died and some have committed suicide because they simply could not go on living with these illnesses without hope of ever finding out what is wrong with them, let alone hope of finding a cure. I hope by mentioning this you realise that we are aware of the devastating effects of your illnesses, and we are sorry, deeply sorry. If GcMAF really is of value for CFS / FM patients, we will do everything in our power to make it widely available to patients.


GcMAF is not a vitamin supplement, it is a very powerful immune stimulator. The effects can be immense. We know that many of you don't 'just' suffer from CFS and/or FM, but many also have undiagnosed 'mainstream' immune disorders and other conditions because of the lack of attention you have received from the medical community. GcMAF can be dangerous in auto immune patients. GcMAF cannot be used with some other protocols and also not with some medications. Because every patient is very different we cannot make general recommendations and will only discuss these topics with those who have been accepted in our trial and will start GcMAF soon.

Our organization can ONLY help people in The Netherlands, Belgium and the UK at the moment. We are looking for ways to increase production and for ways to ship to other countries and continents, but we have not found a secure way to get it through customs yet. GcMAF is a product containing human and animal DNA, there are extensive restrictions for shipping those type of products in some countries.

Please be aware that we are not a medical organization. This is a patient initiative to make GcMAF available to larger groups of patients, because after 17 years of running small clinical trials, the original researcher still refuses to do so. If and when a patient decides to use GcMAF it will be at their own risk and cost. Our GcMAF is safe and the macrophage activty has been tested. It is a functioning product. To monitor the exact effects of GcMAF, we are currently running our own small trials to gain some more experience, but the plan is to make it available for the public at an affordable price. Officially there are no doctors involved in this project. If and when we would be able to send someone GcMAF, they would have to work together with their current physician or a nurse to administer the (first) injection and to monitor your progress.

I am sure you have online friends in The Netherlands, Belgium or The UK. They may contact us so we can run one more trial with patients in our area who we can monitor closely. We will require extensive medical reports supporting any (sub)diagnosis these patients have in the form of a PDF of the original test results/physicians' reports etc, and a list of other symptoms they might have, and a list of current medications and supplements etc before placing them on the waiting list. It is estimated we can start the third trial within 2 months, but we will help patients based on the date of application (first in first send) because we cannot differentiate between one sufferer and another. So, the sooner we have the patient info the better.

If you are receiving this message and do not live within our 'trial area' basically the same applies. Apart from the fact that we first want to run a more extensive trial in our area, the only added criteria will be the question wether we can ship to where you live or not. But perhaps your international patient network can assist with that. Please do not offer to travel to our area to speed up the process, patients in our area actually have to be permanent residents.


A condition from us will be that we will receive medical updates regarding your illness. That means having to re-do the XMRV test after treatment. That means having to re-do all tests (if relevant) that showed abnormalities in the past. And we will ask patients to make a public statement if and when GcMAF has contributed to restoring their health. Without this information we cannot substantiate GcMAF cures anything. If we cannot prove that, we cannot continue our project, which would endanger the physical distribution of GcMAF to yourself and other patients in the future.

Kind regards,
The GcMAF.info team
 

gu3vara

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Interesting, thx Frank.

I would certainly be willing to try it (despite having hashimoto, wonder how big is the risk with this relatively harmless autoimmune condition)
 

HopingSince88

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Totally OT

Talk about cognitive impairment. Every time I see "CgMAF" - what my brain tells me I see is

"McGruff" - LOL sort of...

for those of you not in the US...McGruff is a dog (sort of a mascot) in a cartoon that is a public service advertisement. His tag line is "take a bite out of crime."

absolutely nothing to do with the thread topic. Just thought some of you would get a laugh out of it.
 

Rita

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Got a mail back from them
Very, very interesting the mail from the GcMAF,infoteam.
I hope this treatment works in a lot of patients and can be available for more and more patients.
Its important also that Dr.Mikovists know about this.
 

mojoey

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It's worth pointing out that the GcMaf Frank is talking about is not the same product as Yamamoto's. Yamamoto is the researcher behind the original studies and is currently trying to patent his own synthetic version of it and has been working on clinical trials for some time. If Judy were truly interested in trying GcMaf on patients, she would contact Yamamoto directly. As of right now, I only know of 2 doctors in the world that are doling out his version of GcMaf, and they are selling at very prohibitive prices. That's why cottage industries such as the one Frank contacted have sprung up to produce their own cheaper versions of the product.

Whether any of them will render the same effect as those shown in Yamamoto's studies on HIV and cancer, only time will time. The standard protocol for HIV and cancer is 16-22 injections. Any use on CFS patients would be completely experimental at this point, as in my communications with Yamamoto I can tell even he has no idea how many injections it would take to reverse CFS completely despite his claims of working with CFS patients. He told me he'll be publishing the results of another study this coming fall.
 
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I'm a guy with HIV. I bought gc maf by Noakes. It 's true. That's not Yamamoto. The protocol provides for hiv 18 injections.
I am the third dose.
I can know the names of two doctors who sell product Yamamoto?
I know there is a center in Israel.
In Italy,Yamamoto working with Professor Ruggiero University of Florence. In Vienna, AIDS 1010 will present results of a trial.
hola
 

redo

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What is GcMAF?
From what I have read it seems to be labeled as a Macrophage activating factor (that's where the -MAF in the name comes from). Simply put, how I understand it is that it's use if for activating the immune system, so the immune system could handle problems, such as HIV.

Here's a video from youtube showing the basics of GcMAF.
[video=youtube;y7BLpR214t0]http://www.youtube.com/watch?v=y7BLpR214t0[/video]
 

redo

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Stone - I'm afraid all I know about this is that it stimulates or moderates the immune system and that Kenny de Merlier (sp?) is trying it.

I'm sure others know more.

Jenny
Jenny, can I ask where you got that info?
I'd like to hear more about this. E.g. when it started. I've read somewhere that it was some ten patients getting it, but I can't recall where.

It's worth pointing out that the GcMaf Frank is talking about is not the same product as Yamamoto's. Yamamoto is the researcher behind the original studies and is currently trying to patent his own synthetic version of it and has been working on clinical trials for some time. If Judy were truly interested in trying GcMaf on patients, she would contact Yamamoto directly. As of right now, I only know of 2 doctors in the world that are doling out his version of GcMaf, and they are selling at very prohibitive prices. That's why cottage industries such as the one Frank contacted have sprung up to produce their own cheaper versions of the product.

Whether any of them will render the same effect as those shown in Yamamoto's studies on HIV and cancer, only time will time. The standard protocol for HIV and cancer is 16-22 injections. Any use on CFS patients would be completely experimental at this point, as in my communications with Yamamoto I can tell even he has no idea how many injections it would take to reverse CFS completely despite his claims of working with CFS patients. He told me he'll be publishing the results of another study this coming fall.
Thanks for the info m0joey.

Prohibitive prices... It's a shame if people are making money off this and not doing it on a pro bono basis. Especially when it's in such a early stage and they don't even know what the results will be (pos or neg). I hope the high cost is because it's expensive to acquire, and not because they're greedy.

I certainly hope the GcMAF linked to in the first post (http://www.gcmaf.co.uk/info/) doesn't fall into that category.

They've got this on the about us page. Does anyone know for certain if they are doing it pro bono, or for-profit?
I haven't seen their site until today, so all I know about them is from what I can read on the site...

Who are we?
We are five part time volunteers committed to bringing the increasing number of published but relatively unused cures to as many people as we can.

A biochemist with 30 years laboratory experience analysing disease, two biomedical graduates, a Doctor (MD / oncologist), and David Noakes, the contact person, who has a track record in public life.

We are interested in cures that can be proven at the molecular biology level. We expect our numbers to increase.

As the obvious police state around us grows, particularly in the medical arena with government dictats and the arrival of the frightening Codex Alimentaris, we are very wary of vengeful pharmeceutical corporations and governments. See "The controversy".

We wish you well in every sense of the expression.
 

Sushi

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Here is a YouTube video of Dr. De Meileir speaking about his experience with GcMAF and XMRV: http://www.youtube.com/watch?v=JDYqVDrnlZw

He reported on one confirmed XMRV patient with CFS who has shown a lot of improvement in the weeks he has been treating her with GcMAF. He also said that he is treating 10 patients but only has data, so far, on this one.

Hope this helps.

Sushi
 

Sushi

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The GcMaf De Meirleir is using, is not a synthetic version!
Thanks so much for the report. This is very interesting. I know De Meileir is doing a patient trial, so the costs for patients in the trial may not be the full costs for the GcMAF, but do you know the price per shot or infusion that Dr. De Meileir would charge for someone not in the trial?

Also, did you get any reports (other than what he presented in the YouTube clip) of results--both positive and negative? A big question for me and others is whether the inflammation response (IRIS) has been a big problem for patients and whether the protocol De Meileir is using includes measures to prevent or offset this.

I suspect you are pretty tired (that is an easy guess!) but I'd really appreciate hearing anything more you have learned--whenever and however you are able to share it.

Thanks,
Sushi
 
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I'm a guy with HIV. I bought gc maf by Noakes. It 's true. That's not Yamamoto. The protocol provides for hiv 18 injections.
I am the third dose.
I can know the names of two doctors who sell product Yamamoto?
I know there is a center in Israel.
In Italy,Yamamoto working with Professor Ruggiero University of Florence. In Vienna, AIDS 1010 will present results of a trial.
hola
Hi Paolo82,
Have you had some progress?
My brother have got hiv and I want help him.
Please,let me know if your cd4 count is rising.
Thank you,
Best wish
Lizzy