MAF 314, looking for someone to share

[Rita]

http://www.iacfsme.org/Conferences/2011Conference/tabid/492/Default.aspx
In page 53 there is a
"Compassionate Use Treatment of CFS with GcMAF sub-lingual". Cheney.
In page 45
"Compassionate Use of Gc MAF in ME/CFS Patients". De Meirleir.

http://hivskeptic.files.wordpress.com/2011/09/ruggieropresentazione-siai-2011.pdf
Ruggiero, Pacini and Cheney with MAF 314.

But I think is only a little part of the trial, because there are only a few CFS patients in this presentation

 

[Questus]

Hi,

Does anybody have a link to Dr. Cheneys MAF 314 trial results actually? How did M.E. patients respond to it compared to GcMaf??

Thanks

As a long time patient of Dr. Cheney in the 80's and 90's and a current patient of Dr. Klimas...I want to respond to your question 'how did CFS patients respond to it compared to GcMaf?' Perhaps the comparison is apples and oranges, or at best ambrosia, (smile.) I can't answer precisely, but I would make the following comment...

As I previously posted...Dr. Marco Ruggiero claims MAF 314 can raise CD-4 cells by several hundred in a few weeks. Anti-viral AIDS meds can only raise it by about 90 cells in a year.

This is HUGE for people with HIV and huge for CFS PATIENTS who have the same immune status as HIV patients...(not many of us...far fewer than 15%)

For MOST people with CFS it's not relevant. For some of us with CD-4 cell counts well below 500 it's HUGE! For us folks with CFS that have immune studies that mimic those with HIV this is a gigantic, monster leap! I would travel to Europe in a moments notice to get this benefit.

Ironically I'm not concerned or bothered by the cost of Dr. Cheney's requirement of 2,500 to learn the formula. Dr. Cheney is NOT a money monger and I believe the formula will become available via the internet in due time, and if MAF 314 really works those of us who need it will benefit. I trust Dr. Cheney. I trust that if this formula works then it will be available within the year, either commercially or in an easy formula to recreate via internet.

So if you don't know your CD-4 number, (and in probability you don't unless you've had extensive immune studies done)...Don't sweat it. As I said, most CFS patients have normal CD-4 numbers.

If your CD-4 numbers are really truly low, (well below 500) than this formula will not remain a secret for long.

Best and kind wishes to all people suffering with CFS!
Questus

 

[Sushi]

Hi,

Does anybody have a link to Dr. Cheneys MAF 314 trial results actually? How did M.E. patients respond to it compared to GcMaf??

Thanks

Klimt,

Come on chat and I'll tell you more.

Sushi

 

[Sushi]

Ruggiero posted more today (don't know if the link will work--you might have to join): http://hivskeptic.wordpress.com/2011/07/18/a-cure-for-aids/#comment-8730


Marco Ruggiero said

2011/11/09 at 4:55 am


Thank you for your kind words. Given the widespread interest in the issue, I wish to provide some further information. There is a huge difference between a yogurt containing live (probiotic) bacteria and a probiotic in capsules containing the same identical bacteria. The yogurt raises CD4 to the same extent as ART, the encapsulated probiotics do not (at least not to the same extent and with the same reproducibility). Please read and compare the following two articles from the same group; read the first one first.

http://www.ncbi.nlm.nih.gov/pubmed/20463586

http://www.ncbi.nlm.nih.gov/pubmed/21637031

 

[mellster]

Thanks sushi, I experience similar differences with Andrographis, brewing the nastily bitter tea seems to be much more effective than taking it in capsule form Capsules definitely have its limits.

 

[Lou]

As a long time patient of Dr. Cheney in the 80's and 90's and a current patient of Dr. Klimas...I want to respond to your question 'how did CFS patients respond to it compared to GcMaf?' Perhaps the comparison is apples and oranges, or at best ambrosia, (smile.) I can't answer precisely, but I would make the following comment...

As I previously posted...Dr. Marco Ruggiero claims MAF 314 can raise CD-4 cells by several hundred in a few weeks. Anti-viral AIDS meds can only raise it by about 90 cells in a year.

This is HUGE for people with HIV and huge for CFS PATIENTS who have the same immune status as HIV patients...(not many of us...far fewer than 15%)

For MOST people with CFS it's not relevant. For some of us with CD-4 cell counts well below 500 it's HUGE! For us folks with CFS that have immune studies that mimic those with HIV this is a gigantic, monster leap! I would travel to Europe in a moments notice to get this benefit.

Ironically I'm not concerned or bothered by the cost of Dr. Cheney's requirement of 2,500 to learn the formula. Dr. Cheney is NOT a money monger and I believe the formula will become available via the internet in due time, and if MAF 314 really works those of us who need it will benefit. I trust Dr. Cheney. I trust that if this formula works then it will be available within the year, either commercially or in an easy formula to recreate via internet.

So if you don't know your CD-4 number, (and in probability you don't unless you've had extensive immune studies done)...Don't sweat it. As I said, most CFS patients have normal CD-4 numbers.

If your CD-4 numbers are really truly low, (well below 500) than this formula will not remain a secret for long.

Best and kind wishes to all people suffering with CFS!
Questus

Hi Questus,

I'm not sure I understand your post. However, if you are saying only those me/cfs cases whose immune status are hiv-like, who suffer constantly from colds, flu, etc, if you are saying only that subset of me/cfs people will benefit from maf 314 then I can't agree.

I belong to the opposite subset. I almost never get a cold or the flu. No idea what my CD-4 count is, but I do know treatment with gcmaf has helped me greatly. I've read of no reason why maf 314 won't be an effective treatment for a great many of us, surely more that the fifteen percent mentioned belonging to your subset.

I hope it will help us all, as I'm sure you do as well.

 

[Questus]

Look at the links above that Sushi just posted. These abstracts define how Maf 314 work.

Maf 314 is effective at raising T-4 cells, (CD 4) cells. If you don't have a deficiency in this cell population, I'm not sure what you're suggesting Maf 314 is going to do for you?

It has nothing to do with getting colds or flu!

Perhaps asking your doctor to do a simple CD4 and CD8 cell count would be helpful. It can be done without doing the whole immune study sha-bang! Find out what your T-4 cell count is and go from there.

GCmaf works differently than Maf 314 and for people with ALL kinds of illnesses. Am glad it helped you!

Maf 314 simply works by elevating T-4 cells. Not sure what your argument is.

And yes, of course I want everyone well, more than you might imagine.

Best,
Questus

 

[Rita]

Discussion 4 from the presentation of Ruggiero-Pancini-CheneyMaf 314)

"We hypothesize that the observed clinical and laboratry results can be attributed to the combination of re-establishment of a healthy gut microbiome associated with direct stimulation of the immune system by naturally produced Gc MAF, a task that cannot be accomplished by administration of encapsulated probiotics or chemically producen GcMAF alone"

 

[Lou]

Look at the links above that Sushi just posted. These abstracts define how Maf 314 work.

Maf 314 is effective at raising T-4 cells, (CD 4) cells. If you don't have a deficiency in this cell population, I'm not sure what you're suggesting Maf 314 is going to do for you?

It has nothing to do with getting colds or flu!

Perhaps asking your doctor to do a simple CD4 and CD8 cell count would be helpful. It can be done without doing the whole immune study sha-bang! Find out what your T-4 cell count is and go from there.

GCmaf works differently than Maf 314 and for people with ALL kinds of illnesses. Am glad it helped you!

Maf 314 simply works by elevating T-4 cells. Not sure what your argument is.

And yes, of course I want everyone well, more than you might imagine.

Best,
Questus

My point is that folks not belonging to your subset are already being helped, and no need to discourage others with me/cfs that this very promising treatment will not work for them. Since information regarding the trials has become quite limited on the forum I can only guess one way it may help those not in your situation is by activation of macrophages. I think Rita's post goes much further in explanation of benefits to a wider patient group.

Best regards

 

[Questus]

I originally posted the link to Hivskeptic to illustrate the extraordinary CD-4 test results of Maf-314...(CD-4 and T4 cells are the same thing btw).

Maf-314 has been PROVEN to raise T4 cell counts. Very exciting!

I wouldn't want to discourage anyone from trying anything safe, in fact I try very hard to encourage people with CFS...People I speak to by phone and private email.

The point I'm making is perhaps similar to when Dr. Cheney was taking people to Panama and doing stem cell transplants. I was hopeful, but wanted to see the 'proof' for CFS patients. Stem cell transplants are life altering for many different diseases, and in fact legal in the U.S. for quite a few diseases that have been proven to be helped by it.

Okay, so stem cell transplants didn't work for CFS and I saved time, precious energy and a lot of money by waiting.

My point is MAF-314 has only been proven to dramatically impact T4 cells.

I too HOPE MAF-314 will dramatically alter other aspects of the immune system...Particularly NK cells and their function. But I will wait for proof before assuming that it does.


Here is a fascinating article about another group who was doing research and studies on people using yogurt specifically to improve CD-4 cell counts...

A French food company known in the US as DANNON. An independent Data Safety Monitoring Board (DSMB) recommended that the STUDY BE STOPPED prematurely. What remains unclear, however, is why a study of this nature would be stopped when there is little evidence of harm, limited commercial access to the tested agent and a desire for long-term follow-up data from studies of nutritional supplements.

Interesting indeed...Why was this stopped? Dannon went quite a ways with this. It might have already been commercially available. Read about it. http://www.aidsmeds.com/articles/NR100157_dietary_probiotic_1667_17313.shtml

On a different note, the recipe for Dr. Ruggerio's yogurt is not yet available but it seems that the basis for it is colostrum...Here's the wiki definition of colostrum..http://en.wikipedia.org/wiki/Colostrum

The recipe includes many different probiotics. Figuring out what's in it is way outside the scope of something I'd be able to figure out, but I feel certain there are least two people on this board who could. I hope the recipe finds it's way to the internet soon. Godspeed!

I just received an instant message from someone telling me of another class for making MAF 314 is being taught in Austria. They sent me the website, but I don't speak the language so can't comment.

To all who are traveling to Asheville to take part in the Maf-314 class...I wish you all the best! And I mean ALL! I don't have enough good things to say about Dr. Cheney. Saw him for more than a decade and wish I could still afford to see him...He's one of a kind.

Best,
Questus

 

[Rita]

http://www.enlander.com/conference.html

I see here than Dr Enlander has made another version of MAF 314 with the name MAF 878...but I cant get any information in the net.
And also that there is Nexavir lotion and Nexavir suppositories.

I think that the person who theaches to make MAF 314 in Austria can speak english, german and spanish.In his web there is not a mention to MAF 314.Its Dr Ruggiero-Pacini who theached her recently.

 

[maryb]

Just a question for linder220 - did you find out whether it is possible to make a cassein free version Maf314?

 

[Rita]

The colostrum liquid sold in this page is decaseinated.
http://www.colostrum.de/en/infotainment/information-on-colostrum/production/

 

[anne_likes_red]

Great find - Linder I hope you see this

I used to work in textile design and back in the 90's for a special project we had our buttons made locally from casein. It should have occured to me that casein free milk products might be commercially available somewhere!
I'll have to look and see if I can find something similar closer to home.

Thanks Rita

The colostrum liquid sold in this page is decaseinated.
http://www.colostrum.de/en/infotainment/information-on-colostrum/production/

 

[maryb]

Thanks for the link Rita

 

[Vanguard]

So is there anyway to buy/get some of this stuff yet? I hate to say it but won't it take years to go through the patent process?

 

[lobba123]

be aware that casein is very important part of the product, it may not work at all without casein

Just a question for linder220 - did you find out whether it is possible to make a cassein free version Maf314?

 

[tomtomtom]

lobba123
i am using the same colostrum rita suggested, because it is organic and produced in a very gentle procedure of micro-filtration. how come you believe that this particular colostrum may not be effective, because it does not contain casein? in fact, i suggested this colostrum to the doc in vienna when i was there and she said she would start using it, too, because it is cheaper and better quality than the other she had come across previously. also prof. ruggiero only mentioned the negative impact of aspartame (and possibly other artificial sweeteners), but nothing about casein?

are you assuming that it might not work without casein, or do you have good reason or priviledged insight to argue that? if you do, i would very much appreciate your expertise... since i do not know myself.

best wishes and thanks for all the constructive posts,
thomas

 

[Rita]

I think the best is to ask to Dr Ruggiero or Pacini to know about the casein problem.

@lobba123
i am using the same colostrum rita suggested, because it is organic and produced in a very gentle procedure of micro-filtration. how come you believe that this particular colostrum may not be effective, because it does not contain casein? in fact, i suggested this colostrum to the doc in vienna when i was there and she said she would start using it, too, because it is cheaper and better quality than the other she had come across previously. also prof. ruggiero only mentioned the negative impact of aspartame (and possibly other artificial sweeteners), but nothing about casein?

are you assuming that it might not work without casein, or do you have good reason or priviledged insight to argue that? if you do, i would very much appreciate your expertise... since i do not know myself.

best wishes and thanks for all the constructive posts,
thomas

 

[Crappy]

Thank you all!!

I just wanted to express my gratitude for all the Pioneers and Guinea Pigs who freely share here. This illness was so much harder when I was alone.

I hate being sick; but I am proud to be in a class of people who persevere in the face of horrific conditions too often compounded by dismissive, so called; professionals. The information shared on here, is maybe a decade ahead of the medical community in my area. I recently had a consult, out of curiosity, with an Infectious Disease Specialist in my area, only to be told again. Chronic Fatigue or Myalgic Encephalomyelitis does not exist.

Like Comedian Ron White says,you cant fix stupid.

I hate the illness, but I am proud to belong to a group of people who feel worse than the average person can understand or imagine; but they march on, pushing for answers in conditions so horrible, most people will never comprehend. We live in quiet desperation, but we are not alone.

Thank you all for all the participation; and for being so damn stubborn! Not accepting dismissive and diminutive behavior of people who took an oath to help. The help you provide this cause and those affected, is priceless.

Oh, and Merry Christmas!