1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

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

Discussion in 'General ME/CFS News' started by Sasha, Nov 11, 2011.

  1. maryb

    maryb iherb code TAK122

    Messages:
    2,704
    Likes:
    1,681
    UK
    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.
  2. Spring

    Spring Senior Member

    Messages:
    133
    Likes:
    88
    Netherlands
    Thank you very much Rich for your detailed report on KDM's speach! And Sushi thanks gor asking Rich.
  3. Rrrr

    Rrrr Senior Member

    Messages:
    1,393
    Likes:
    253
    thank you, rich, for all this!!! did kdm or enlander talk about MAF at all?

    rrrr
  4. denlander

    denlander

    Messages:
    26
    Likes:
    76
    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
  5. anniekim

    anniekim Senior Member

    Messages:
    584
    Likes:
    183
    U.K
    Thanks Rich and Dr Enlander for your updates on the conference, sounded excellent.

    Rich wrote in his report that KDM
    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?
  6. ukxmrv

    ukxmrv Senior Member

    Messages:
    3,266
    Likes:
    1,631
    London
    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)
  7. Sasha

    Sasha Fine, thank you

    Messages:
    7,436
    Likes:
    5,301
    UK
    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.
  8. denlander

    denlander

    Messages:
    26
    Likes:
    76
    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
  9. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    838
    UK
    Many thanks for all this - Dr Enlander and Rich - great help to us here. (not forgetting KdeM of course).
  10. Sasha

    Sasha Fine, thank you

    Messages:
    7,436
    Likes:
    5,301
    UK
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

    Messages:
    6,197
    Likes:
    4,810
    Albuquerque
    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
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    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.' :D

    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!
  13. madietodd

    madietodd Senior Member

    Messages:
    2,393
    Likes:
    1,556
    East Coast, USA
    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!
    justinreilly likes this.
  14. shannah

    shannah Senior Member

    Messages:
    833
    Likes:
    156
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    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.

See more popular forum discussions.

Share This Page