CFS Patient Advocate on Nov 20 conference etc. at Mt Sinai ME/CFS Center

[maryb]

Thank you so much for this detailed reply Rich, I hope you enjoyed the conference and I'm sure the opportunity for the spotlight on your work will lead to greater things for you and us patients.

 

[Spring]

Thank you very much Rich for your detailed report on KDM's speach! And Sushi thanks gor asking Rich.

 

[Rrrr]

thank you, rich, for all this!!! did kdm or enlander talk about MAF at all?

rrrr

 

[denlander]

Yes, I spoke about clinical experience of GcMaf , MAF 314 and MAF 878. Kenny reviewed the theory of GcMaf.
I also reviewed Rich's Methylation Cycle theory from 10 years of clinical experience. Rich joined the panel at the conference end, we fielded questions.
It was a good conference with a standing room audience
Derek Enlander MD
New York

 

[anniekim]

Thanks Rich and Dr Enlander for your updates on the conference, sounded excellent.

Rich wrote in his report that KDM

monitors cytokines, C4a, and activated T cells.

Does anyone know what tests measure cytokines and activated T cells, ie what are the names of these tests? Also with regards Iris, it is just a case of grinning and bearing it as it will eventually pass?

 

[ukxmrv]

Dr Enlander.

Congratulations on such a successful conference.

Do you mind if I ask what MAF 878 is? (I know of MAF314 but not this version)

 

[Sasha]

It was a good conference with a standing room audience

Very pleasing to hear that - so many things aren't well-attended because so few patients are well enough to support these things in person. It's great that it was packed out.

 

[denlander]

similar idea, MAF induced by probiotic bacteria in a yogurt base. Research under way to show NK cell and CD 20 cell levels
Derek Enlander MD

 

[Enid]

Many thanks for all this - Dr Enlander and Rich - great help to us here. (not forgetting KdeM of course).

 

[Sasha]

It was a good conference with a standing room audience
QUOTE]

Very pleasing to hear that - so many things aren't well-attended because so few patients are well enough to support these things in person. It's great that it was packed out.

 

[Sushi]

Hi, Sushi.

I asked Dr. de Meirleir about the effect of GcMAF on NK number and function. He replied that he does not have information on that yet. I'm not sure I understood him exactly, but I think he meant that he has the data but has not analyzed it yet.

In his talk, he offered four possibilities for what could be causing the nagalase elevation in ME/CFS patients: retroviruses, herpes viruses, intestinal bacteria, and HERVs (human endogenous retroviruses)....

He explained that both GcMAF and LPS are able to activate macrophages. However, they do it by different mechanisms. When it is done by LPS, it leads to elevated nitric oxide, interference with MRP2, and loss of control of redox status. I think he said that CCD14 was also elevated in this case. He said that these two processes compete and are mutually exclusive. The affinity for GcMAF is higher, and it does not involve release of IL-1 and TNF-alpha. What he called "bad" activation of macrophages by LPS is inhibited by activation with GcMAF....

There has been a suggestion by others that GcMAF might promote autoimmunity. He has not found this in his cases, but he does exclude patients from this treatment who have elevated TGF-beta, IL-6, or high ANA or thyroid antibodies, to be on the safe side....

The video of the meeting will be posted soon by Peter Cairns, son of "PatientAdvocate", who videoed the meeting, so you will be able to check to see if I got the details right.

Best regards,

Rich

Thank you so much for this wonderfully detailed report! There is a lot of very interesting information here. That LPS can also activate macrophages , in a "bad" way, is also fascinating. I know I had high levels of LPS before treatment.

It is good to know that some of the reported negative effects of macrophage activation--elevated nitric oxide and interference with the redux status--are caused by this "bad" activation of macrophages and not by GcMAF. It is also good to know that there is a higher affinity for activation by GcMAF when the two methods are competing.

Once again, the gut looks like it is in a star's role (here the bad guy) in this whole picture.

Thanks again. I am so glad you were able to attend and make your presentation. Slowly more pieces of the puzzle are fitting together.

I look forward to the video, and thanks to "The Patient Advocate" for doing the video work.

Best wishes,
Sushi

 

[justinreilly]

Rich - I'm excited to get to meet you, and - bonus points! - now I get to hear you live!

Life is good.

Congratulations!

My folks spoke with you at the talk. My Mom said that you said you recommended 'an internet site called phoenix rising and had i heard of it.'

They were impressed with the presentation (though they didn't understand that much of it of course). I'm thinking of moving back home to NYC so i can get some real treatment. there isn't really anyone who really specializes in ME and is on top of it like they need to be out here in Colorado. The folks are out here now in Boulder to spend thanksgiving with me.

hope you had a good time at the talk and in NYC!

 

[maddietod]

Justin, your parents were great! If you move to NYC, do you have a treatment in mind you want to go for? Or would you just start seeing Dr. Enlander and see how that goes?

Tell your parents 'hi' from me, and happy Thanksgiving!

 

[shannah]

KDM lecture is up at Chris's site

http://cfspatientadvocate.blogspot.com/2011/11/mt-sinai-mecfs-conference-de-meirleir.html

 

[justinreilly]

Justin, your parents were great! If you move to NYC, do you have a treatment in mind you want to go for? Or would you just start seeing Dr. Enlander and see how that goes?

Tell your parents 'hi' from me, and happy Thanksgiving!

I think I'm going to start seeing Enlander now- after the intake he does long-distance tx, so i could live in CO. I am thinking of also doing ampligen, which would mean i'd move back to NY.