GCMAF factory closed down in the UK

Santino

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So to put it together: It does not make sense?!

I meant, that I found the topic gcmaf. Not Gcmaf themselves...

I am on very resctricted diet. Any food with vitamin A, beta Carotin, high amounts of C give me flu like reaction. Many foods trigger my nepritis and I suffer from constant brain fog since I took one high dose Vitamin D3 (600.000 IU).

I also had the same brain fog from LDN which I now have from the Vit D. It does not go away.

I did FMT in a clinic but that also did not help me. Trying out to introduce foods back into diet did not work and made symptoms worse.

I don´t feel like any "normal" doctor would work with me in a way which would be helpful for me. I guess the would not listen to the things I found out for me...

So if anybody knows anything which I can try out what is not any diet protocol (because I can just eat 4 foods anyway at this moment), please let me know...
 

Sushi

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I don´t feel like any "normal" doctor would work with me in a way which would be helpful for me. I guess the would not listen to the things I found out for me...
That is probably true! There are some very good "abnormal" doctors however, depending on what country you are in.

Sushi
 

Santino

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I live in Germany. Let me know if I can find somebody here who is not an idiot and knows more than most doctors and myself. I could also go to Netherland.

Problem is that I tried so much things out and never met a doctor who could tell me things I did not know. Most doctors seem to know nothing what about newest evidence or what might help people with autoimmunity, brain fog etc.

I guess most doctors would just give antidepressants when people try to explain brain fog...
 

ukxmrv

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In Germany you could maybe consider seeing

1. Dr. Carmen Scheibenbogen at Berlin Charite

OR

2. Dr Beiger


I've not seen either of these myself. If you do a search on this forum you should hopefully be able to find some patients and see what help that they can give

I think that Dr Enlander (New York) sometimes sees patients in Germany as well.

When I had a restricted diet I did EPD and was able to introduce foods back in over time. That was through the Homeopathic Hospital in London and I don't know if anyone offers that in Germany.

It's not much to go on sadly.
 

xrunner

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So if anybody knows anything which I can try out what is not any diet protocol (because I can just eat 4 foods anyway at this moment), please let me know...
Hi @Santino
we had a similar conversation some time ago so I'll keep it brief, based on my own view as somebody who used to suffer from MCS and has now completely healed from that.

Your reactions and evolution of symptoms suggest your immune system is developing sensitivities to many foods and supplements.
Based on my own personal experience, I would discourage you to "try out" anything.
In fact you have more chances to recover by not experimenting with any supplements, diets or anything else not supported by an experienced specialist.

By trying things out you're likely to make it worse (this happened to me) as you keep loading your immune system whilst not giving it a chance to "calm down" which may lead you to MCS.
The best thing you can do is to avoid anything that triggers your reactions while sticking to foods that you tolerate well and allow time to heal your system (assuming the root cause is not an underlying trigger such as for e.g. mold, lyme, mercury toxicity).

In terms of treatments that may help you recover more quickly, there's only one that in my view worth trying and that would be an antigen vaccine which in the short-term can help you eat a wider range of foods while over time can lower your sensitivities.
Best wishes
 

Santino

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I called Dr. Scheibenbogen because I live in Berlin. but she is not available until october 2015 + they told me that she is no expert in autoimmune diseases and I am at the wrong address if autoimmuntiy is there.


May I ask if you were treated by one of those Doctors? How did you find that they maybe helpful?

Thank you!
 

Santino

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Hey xrunner,

I cannot imagine that my body will heal by itself if I just continue eating rice, chicken and flax seed oil...
 

Sushi

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GcMaf is a huge scam. Professor Ruggiero in Italy - who used to claim GcMaf effectiveness - got permanently banned from medical profession due to its unsafe and unethical way of operating in the medical field.
I am not sure what this has got to do with the validity of GcMAF or Prof Ruggiero actually.
There are a lot of scams in medicine unrelated to GcMAF etc
 

barbc56

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AFAIK, there isn't any science to back the medical claims for GcMAF. Most of the studies about it's medicinal properties have been retracted not only for being poorly designed but also for conflict of interest and in one case forging a signature.

I am not discounting people who have reported improvement but without some medical validity, how do we know that it was GcMaf that caused this?

Who knows, maybe it does work, but at this point in time there's not enough evidence to say it does or doesn't work.

Here are some links I found helpful.

http:/wetractionwatch.com/2014/07/25/paper-about-widely-touted-but-unapproved-cure-for-cancer-autism-retracted/

http://scholarlyoa.com/2014/07/24/w...cure-proven-effective-in-a-predatory-journal/

http://wwddtydty.com/2014/11/gcmaf-superhero-health-problem/

http://www.anticancerfund.org/therapies/gcmaf

Barb
 
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Thanks for raising this.
There are many questions to be answered in this field.
There are questions about the journals used for publication. Even established journals have questionable science published.
Regards
 

barbc56

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Yes. I have been reading about this very subject and I was surprised how many. I also read that many of the studies, even in the more prestigious journals as you mentioned in your post, aren't registered.

I don't know the impact of studies not registered and what it means.

I keep meaning to look this up, had forgotten and your post made me remember. I've got to start writing things down. I have always been a list maker but sometimes it just seems like too much trouble as far as energy.

Thanks.

Barb
 

JayS

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The mess surrounding GcMaf is unlikely to be resolved anytime soon. A shame, really, because anecdotal evidence is quite positive for many patients, but we all know what that amounts to.

When Yamamoto first published his research, well, I wish I knew more about it. I read @barbc56 's links some time ago, and I haven't revisited them, so I may not be remembering entirely correctly. But my understanding is that GcMaf can be said to lower nagalase. The problem is that Yamamoto's research claimed that as evidence of effective treatment for cancer patients, on the basis that nagalase is a marker for cancers. I don't know that this part of it is considered valid. I could be wrong, but something tells me that if they'd only claimed that it lowered nagalase, without touting this as proof of efficacy as a cancer treatment, they might've had more defensible claims. Of course, then a paper becomes less valuable to a journal. When I saw that Yamamoto had been accused of misconduct, that seemed rather odd. I had heard a few stories about him and he didn't seem the type, but then I would've thought he might've mitigated the claims somewhat. I always wondered if making the bolder claims wasn't actually his idea, but he went along with it. That was the sense I got, but I honestly have no idea, and that's pure speculation on my part.

David Noakes is somebody I heard negative stories about from several people, so not much surprises me about him with regards to either his claims, his dodgy business practices, his factory, or his politics.

Marco Ruggiero I've only heard positive feedback about--although he has gained a reputation as an HIV denialist. That's never going to be helpful, for reasons that should be obvious. Considering all the good I'd heard about him, I was a bit surprised when I'd heard he'd partnered with Noakes. Whatever the case, I think both that none of these principals look at GcMaf as being primarily an ME/CFS treatment, and that what would be needed to substantiate any positive effect--clinical trials and publication in reputable journals--will never happen. A shame, because, again, anecdotally it has seemed to help quite a few people. But nobody's really gone about it the right way. That doesn't mean it deserves the scorn it receives, which seems based in no small part on the actions of its promoters, when all that should matter is its efficacy and safety.

Unlike many other 'remedies' promoted by shady (or otherwise compromised) individuals, I do not think this is snake oil. But, heck, some people say Ampligen is a 'toxic placebo.' GcMaf is just one relatively small mess on the fringe of the enormous mess of ME/CFS.
 

ErdemX

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For the last 2 years I've been reading everything I can about GcMaf and now I am even much more sceptical about it ever.

Everything about First Immune, including every sentence on their web site, their "clinics", their claims and "scientific papers", their doctors, their sale policy and this guy at top of them looks like a major deceit to me.

After all those years, this substance hasn't been examined scientifically from objective labs and we still don't know what we are supposed to inject to ourselves, where the blood comes from, what it really has inside and what its real scientific effects and long terms impacts are. There is a big ethical problem that all those claims about its miraculous curing effects and scientific studies are only declared by the company that sells it - for a very heavy price tag. We are not talking about chlorine dioxide, which you can get for less than 50 dollars. Thats a substance sold for 450 euros a small vial, and we are supposed to use it weekly for a very long period, more than a year with no guarantee of clear benefit.

First time when I saw their web site, I was very curious why the addresses and multiple photos of their clinics are not present with the doctors listed. They were claiming a %70 cure rate for CFS in their clinics, yet there was even no single photo of a clinic, not even on the entire internet? Where were all that cured people? And after a couple of years things has become even more shady, purchasing a blood product to inject yourself for cancer, autism or CFS has become a very unsecure, suspicious online procedure.

And I was also shocked to read that when their production lab was raided by police in Guernsey, they found like 10.000 vials. And this guy sells one vial for 450 euros to hopeless people suffering from horrible diseases, telling them that no prescription and no doctor is required and still blames the evil Big Pharma? Well, what I clearly see is an evil Little Pharma.

So maybe we should skip this part of the story and just focus on the chance of healing with this product, try our luck. If it cures us, than nothing really matters. But than that is a very confusing part of the story. We all know that our disease is not stable, changes in days, hours, and years; changing in symptoms and severity. People who use GcMAF reports changes, sometimes improvement, sometimes worsening, big worsenings in hope of a big healing at the end - and I rarely saw a clear happy ending in any forum, maybe only a couple of people. And we never know that if those up and downs are really and solely from the effect of GcMaf. In the past there had been times that I wasn't on any supplement and drug, and yet my symptoms were changing like crazy with up and downs. Now after years I'm watching the same story about LDI with sadness. A very expensive substance with no scientific objective data, no one really knows whats inside, strange dosages with claims that it can effect very badly or nicely, needs to be used long term with patience, and very sick people in forums talking about thair daily confusing experiences, in search of a meaning. That's really sad. I just joined the Facebook group and frankly I dont see those cured people, its like a doomsday there; very sick people asking each other how the other felt on 10C, if their core dose is 14D and where to go now. And again, a phone consultation (correct me if I'm wrong) with the master is like 500 dollars? I wonder how long the waiting list will be now, after the Instagram post of Yolanda Foster with three tubes of enigmatic substance that has more than 13.000 likes.

Lately I sent a message to Betterhealthguy and asked about his final thoughts on GcMAF. He had a very detailed log on his blog about his treatment back on 2011-2013 ( http://betterhealthguy.com/gcmaf-log ). He was very patient, despite he suffered from a lot of inflammation while on it. He told me that he doesnt feel that it was helpful for him at all and it was a very difficult treatment because of constant inflammation with no clear benefit.

There are so many other negative aspects of that matter which I wanted to write, but I am too tired now :) But I would love to hear different opinions..
 

halcyon

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But I would love to hear different opinions..
I pretty much agree with everything you wrote.

I had a passing interest in gcMAF at first because my nagalase level came back high. I actually had no idea it was a blood product until I heard about the lab being shut down. If I had known that from the beginning I never would have even had an interest in it. It makes me wonder how many people injected themselves with it and had no idea it was a blood product.
 

Sushi

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For the last 2 years I've been reading everything I can about GcMaf and now I am even much more sceptical about it ever.
Everything about First Immune, including every sentence on their web site, their "clinics", their claims and "scientific papers", their doctors, their sale policy and this guy at top of them looks like a major deceit to me.
I fully agree about First Immune and their claims and director, but that doesn't cover GcMAF used responsibly, reasonably priced and with realistic claims.
There is a big ethical problem that all those claims about its miraculous curing effects and scientific studies are only declared by the company that sells it - for a very heavy price tag.
Again agreed--however there are others who supply it responsibly, though no longer in the US.
Thats a substance sold for 450 euros a small vial, and we are supposed to use it weekly for a very long period, more than a year with no guarantee of clear benefit.
It is supplied by some doctors for a fraction of that price -- as an experimental treatment.
People who use GcMAF reports changes, sometimes improvement, sometimes worsening, big worsenings in hope of a big healing at the end - and I rarely saw a clear happy ending in any forum, maybe only a couple of people.
I can only report my own experience and that of a few friends. We all have had long term, tangible benefits--though certainly not cures!
 

Lou

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For the last 2 years I've been reading everything I can about GcMaf and now I am even much more sceptical about it ever.

Everything about First Immune, including every sentence on their web site, their "clinics", their claims and "scientific papers", their doctors, their sale policy and this guy at top of them looks like a major deceit to me.

After all those years, this substance hasn't been examined scientifically from objective labs and we still don't know what we are supposed to inject to ourselves, where the blood comes from, what it really has inside and what its real scientific effects and long terms impacts are. There is a big ethical problem that all those claims about its miraculous curing effects and scientific studies are only declared by the company that sells it - for a very heavy price tag. We are not talking about chlorine dioxide, which you can get for less than 50 dollars. Thats a substance sold for 450 euros a small vial, and we are supposed to use it weekly for a very long period, more than a year with no guarantee of clear benefit.

First time when I saw their web site, I was very curious why the addresses and multiple photos of their clinics are not present with the doctors listed. They were claiming a %70 cure rate for CFS in their clinics, yet there was even no single photo of a clinic, not even on the entire internet? Where were all that cured people? And after a couple of years things has become even more shady, purchasing a blood product to inject yourself for cancer, autism or CFS has become a very unsecure, suspicious online procedure.

And I was also shocked to read that when their production lab was raided by police in Guernsey, they found like 10.000 vials. And this guy sells one vial for 450 euros to hopeless people suffering from horrible diseases, telling them that no prescription and no doctor is required and still blames the evil Big Pharma? Well, what I clearly see is an evil Little Pharma.

So maybe we should skip this part of the story and just focus on the chance of healing with this product, try our luck. If it cures us, than nothing really matters. But than that is a very confusing part of the story. We all know that our disease is not stable, changes in days, hours, and years; changing in symptoms and severity. People who use GcMAF reports changes, sometimes improvement, sometimes worsening, big worsenings in hope of a big healing at the end - and I rarely saw a clear happy ending in any forum, maybe only a couple of people. And we never know that if those up and downs are really and solely from the effect of GcMaf. In the past there had been times that I wasn't on any supplement and drug, and yet my symptoms were changing like crazy with up and downs. Now after years I'm watching the same story about LDI with sadness. A very expensive substance with no scientific objective data, no one really knows whats inside, strange dosages with claims that it can effect very badly or nicely, needs to be used long term with patience, and very sick people in forums talking about thair daily confusing experiences, in search of a meaning. That's really sad. I just joined the Facebook group and frankly I dont see those cured people, its like a doomsday there; very sick people asking each other how the other felt on 10C, if their core dose is 14D and where to go now. And again, a phone consultation (correct me if I'm wrong) with the master is like 500 dollars? I wonder how long the waiting list will be now, after the Instagram post of Yolanda Foster with three tubes of enigmatic substance that has more than 13.000 likes.

Lately I sent a message to Betterhealthguy and asked about his final thoughts on GcMAF. He had a very detailed log on his blog about his treatment back on 2011-2013 ( http://betterhealthguy.com/gcmaf-log ). He was very patient, despite he suffered from a lot of inflammation while on it. He told me that he doesnt feel that it was helpful for him at all and it was a very difficult treatment because of constant inflammation with no clear benefit.

There are so many other negative aspects of that matter which I wanted to write, but I am too tired now :) But I would love to hear different opinions..


You've been reading about it, have you tried it? For me, though it doesn't seem to work for all, it knocked the socks off other things I've tried.

However, am among those Halycon mentioned, didn't know it was a blood product and haven't tried again.

That said, I understand your skepticism. Too bad it's not available through mainstream medicine with necessary ultra caution for its sterility(though for all I know claims to its safety from available sources are valid, i.e. didn't get sick, far as known to date).
 
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ErdemX

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It is supplied by some doctors for a fraction of that price -- as an experimental treatment.
Now I am a patient of KDM and he wants me to put on GcMAF after our next consultation. Although I don't know how the pricing will be, he is probably one of the doctors you mention. He is a strong believer in the product. But last month I read a post of a lady on a Facebook group, who happens to be a patient of Dr. Enlander. She said that Dr. Enlander wanted to put her on GcMAF but because he is getting out of stock, he wanted her to buy 10 months of injections. She said she was desperate and had to spend 8000 dolllars on GcMAF. I don't know what to say really.

I can only report my own experience and that of a few friends. We all have had long term, tangible benefits--though certainly not cures!
I also remember two people on this forum who said they reached almost remission with GcMAF. It could be @Olena and @CindyWillis . It's great to hear that and such a wonderful motivation for us, but the numbers of those reportings are unfortunately very low.

You've been reading about it, have you tried it? For me, though it doesn't seem to work for all, it knocked the socks off other things I've tried.
I ordered GcMAF from the Japanese clinic Saisei Mirai, because I didn't trust First Immune and Olena form the forum said the product is of excellent quality, works for her and lastly they really look like a normal health clinic with branches on different big cities in Japan. I used it for 2.5 months and reached to a very high dosage. I never had a bad or good reaction, nothing very noticable, but my health was already going down before that and after 2.5 months I was very ill and stopped it. Now I am on the new oral colostrum form it for 1.5 month and again no noticable effect yet.

There was a warning on the First Immune web site against the Japanese GcMAF, a very hostile declaration claiming that it contains no GcMAF at all and is only regular serum. I never took that seriously. But recently I told KDM that I use the Japanese product, he told me its a "bad GcMAF" and I shouldn't use it. That makes the situation even more complicated..