Very brief NJCFSA confernce overview XMRV, Levine & Enlander

Discussion in 'Fibromyalgia Main Forum' started by bakeman, Oct 24, 2009.

  1. bakeman

    bakeman New Member

    Sunday Oct 17. 11:30 AM - 5 PM Northern Jersey
    Speakers: Dr. Susan Levine & Dr. Derek Enlander

    Dr. Levine: spoke about a small study she conducted involving orthostatic intolerance & CFS. Long story short, treating OI did not appear to relieve CFS symptoms.

    Dr. Enlander: spoke about methylation. The information mostly went over my head but he said he was having positive results.

    XMRV: Dr. Enlander was excited about the about the xmrv research for many reasons; it has the potential to push Simon Wessely out of the picture for good, its good for publicity and can get new researchers interested. He said however to not get too excited until the results can be reproduced.

    Dr Levine was less impressed and less excited about the study for 2 reasons. She wanted to know more information about all the people used in the research. She seemed to be concerned about how & why 3.7% of the healthy population tested positive. Further she agreed the study must be reproduced & with more information on the subjects.

    I was sleep deprived this day so if anyone else attended this conference please feel free to add info I may have missed.

  2. Elisa

    Elisa Member

    Thanks for posting this info - very interesting - you did great, even sleep deprived!

    God Bless,

  3. jasminetee

    jasminetee Member

    Hi Bakeman,

    Thanks so much for going and for giving us updates about Levine and Enlader's stances on XMRV and methylation.

  4. chrislopez

    chrislopez New Member

    The Main speakers were Dr Derek Enlander and Dr Susan Levine. Dr Enlander spoke for an hour gave a broad overview of recent research including the XMRV viral work. He said that it was too early to judge the outcome and the initial results have to be reproduced and duplicated by other researchers before we can determine the meaning of the original results. He however was excited for other reasons, he stated that the publicity resulted in the Press reporting that CFS/ME was indeed a disease rather than an imagined problem. He underlined the deFrietas retrovirus research 20 years ago resulted in a setback in CFS because it was not reproducable.
    He then spoke about the methylation cycle and the results of his treatment protocol (based on RichVank). 65% of patients improve on this treatment. The protocol is based on the Kutapressin-like product, Hepapressin Complex includes aminocid complex,folic acid,magnesium sulphate,calphosan,methylcobalamine and some other things; Immunoprop, a glutathione/ l-cystine product (; Immunoplus contains follinic acid and other things ; An electrolyte mixture based on Blassi (Spain) research, and sublingual Methyl cobalamine instead of injections.
    Dr Levine gave a listless uninformative talk for ten minutes, she seemed uninterested and was uninteresting. I think she is burnt out. A medical student talked on some research.
    Dr Enlander was presented with a plaque by the Society for his work, we noted Susan Levine left the room for the presentation, it was not polite. Maybe she had to go, but her timing was poor, nor did she apologize.
    In all, a good conference because of Enlander's talk, I hope he speaks again.

    [This Message was Edited on 05/13/2010]
  5. gapsych

    gapsych New Member

    Thanks for the information.

    Where can I get info. about the research saying 65% of patients improved and the definition of improvement.

    Wow, how rude of Dr. Levine. Is there animosity between the two. I know this frequently happens in the scientific community.


    ETA I did not realize this post is from October. Maybe that meansI can get more information.[This Message was Edited on 05/13/2010]