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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. Sasha

    Sasha Fine, thank you

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    Interesting blog post here - it says:


    Treatment research will involve methylation cycle defect, viral effects and correlations, immunology, immune system defects (Ampligen, GcMAF, MAF 314, Nexavir, Hepapressin), and mRNA before and after Post Exertional Malaise.​


    and


    And now today comes the announcement of the first conference at the Mount Sinai ME/CFS Research and Treatment Center. This will occur on Sunday November 2oth. Registration will be at 10:30 in the morning with the conference starting at 11. The conference, entitled "New Methods of Diagnoses and Treatment," will feature Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. David Bell, and Dr. Eric Shadt. Subjects will include treatment summary of GcMAF, MAF 314, Retuximab, CMX 001, Ampligen and Nexavir. This is just the kind of consolidation of clinical experience and allied research that is needed at this exciting time.​


    Please go to the blog for a look at the full thing and to give CPA the traffic! He deserves it.
     
  2. ixchelkali

    ixchelkali Senior Member

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    That's pretty exciting. Boy, would I like to attend that conference. If I lived around there I would go, and PEM be damned. I hope they can attract some doctors; I'd like to think of that bunch passing along their collective knowledge of ME/CFS to the wider medical community, especially young doctors. I think there are doctors who are sympathic to their patients, but who have no idea that there might be treatments that could help.

    I'm pleased to learn they plan to do research on methylation cycle defect. It would be good to have some serious science done on that. And Mt Sinai has a good enough reputation that their research should be given serious consideration.
     
  3. ixchelkali

    ixchelkali Senior Member

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    Mary Schweitzer just mentioned that they are going to videotape it and put it out on the Internet.
     
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  4. taniaaust1

    taniaaust1

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    This sounds so great. :)

    I too are very happy that methylation cycle problems are going to be spoken about at that.
     
  5. richvank

    richvank Senior Member

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    Me too, tania. I just signed up to go. Dr. Enlander has been doing a version of methylation treatment for some years, and he reports good results with it.

    Best regards,

    Rich
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Mt. Sinai is in my parent's neighborhood and my Dad is going to try to check it out. Happy to report my folks are getting much better with the acceptance of ME as a 'real' disease! glad Dr. M is going to be able to attend.
     
  7. madietodd

    madietodd Senior Member

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  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Glad to hear your family is coming around to accepting your illness.

    GG
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thanks, GG!
     
  10. richvank

    richvank Senior Member

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    Hi, all.

    Dr. Bell is unable to come to the Mt. Sinai meeting, and I have been asked to speak on methylation in his half-hour time slot. I am sorry that he can't come and will miss seeing and hearing him. He was the person who first asked me to come up with a treatment protocol based the GD-MCB hypothesis, and that's why the simplified treatment approach was born.

    Please wish me godspeed. I think this could be a good opportunity to get more research attention to the methylation issue in ME/CFS, and I think that will pay off for everyone in the ME/CFS community

    Best regards,

    Rich
     
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  11. Sasha

    Sasha Fine, thank you

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    Very good luck, Rich! I'm sure you'll do a fine job at your presentation. You came across extremely well in your presentation in Sweden that we saw on the video. I really hope the SMP gets more research attention - it would be great for patients if it did.
     
  12. SpecialK82

    SpecialK82 Senior Member

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    Thanks for filling in for Dr. B Rich, all the presentations sound like they will be a hit - looking forward to seeing on video!
     
  13. Enid

    Enid Senior Member

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    Great news - all those who know coming together and sharing research and their findings.
     
  14. Battery Muncher

    Battery Muncher Senior Member

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    Rich,

    That's great news. I've followed your posts with interest, and am certain that you have a lot to add to the conference.

    Good luck!
     
  15. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Great Rich,

    I am sorry that Dr. Bell cannot come but I am very glad that you will do this presentation to this particular audience! Your input could help "tweak" some very good treatments to be better.

    If there is a natural place to slip in a couple of questions from "us out here", I and others would be grateful: "Does treatent with GcMAF in any of its forms improve NK cell absolute count and function?"

    Also, I know there is research going on as to "just what is it that produces nagalase" in our population. Another "hot" question for some of us and it could even be circuitously related to Glutatione (that is an obvious attempt at tempation!)

    Also, I believe Dr. Enlander doesn't feel that the nagalase test offered by Health Diagnostics and its sister lab in Holland is reliable--yet they are the only ones I know who offer it. I know you have a professional relationship with Dr. Audya, and I wonder if he has ever commented on this test or whether you have had the opportunity to discuss it with him.

    Very best wishes for your presentation as this interesting conference.

    Thanks,
    Sushi
     
  16. anne_likes_red

    anne_likes_red Senior Member

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    Very best wishes for your presentation Rich!

    I'm sure Dr Bell will be pleased with the choice of a replacement.
    Only half an hour.....guess we won't be hearing about your socks then...

    Oh, and enjoy your trip to NYC! No doubt there's going to be some quality networking going on behind the scenes too.

    Anne.
     
  17. madietodd

    madietodd Senior Member

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

    Life is good.

    Congratulations!
     
  18. beaker

    beaker CFS/ME 1986

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    I would like a favor from someone going to conference please.
    I have been in contact w/ Dr. E trying to get info on his charities.
    He replied and said there are 2 --both tax exempt. one is a foundation in memory of his wife. the other is a mt. sinai ME/CFS foundation.
    BUT He forgot to give me the contact info for them ---how to donate and which one supports what. ( and even what the exact names are ) I think he was a bit hurried in leaving out all the details !
    I want to support research that they will be doing.
    can someone going please ask for me ? I'm sure others would like to know as well.
    Thanks !
     
  19. waiting

    waiting Senior Member

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    Congratulations, Rich! This is an honour and you're going to do so well!
     
  20. richvank

    richvank Senior Member

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    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).

    Dr. Enlander told me that he had split a sample into three, sent them to the lab, and received three different results. I don't know how different, but apparently different enough that it has caused him to question the reliability of the test. On the other hand, Dr. de Meirleir reported that in 395 patients, the average nagalase level in his practice has been 1.72 nmol/min/mg, while controls have been less than 0.69 (the range of controls is 0.35 to 0.68). Dr. de Meirleir also quoted Dr. Cheney as reporting that in his practice, thepatients average 3.0, with a range of 0.8 to 6.7. He said Dr. Cheney has also reported that he finds the nagalase level in his patients to vary inversely with their Karnovsky scale value.

    Dr. de Meirleir also reported that he has found that if he divides his patients into two groups, having higher and lower nagalase values, he does not find that those with the higher nagalase have a lower VO2max than those with lower nagalase values.

    He did make the point that some intestinal bacteria do produce nagalase.

    He said that in a Norwegian study it had been found that when comparing seriously ill, bedridden patients with a low Karnovksy number to a less-ill group with a Karnofsy number of 60 to 70, it was found that LPS [lipopolysaccharide, from the cell walls of gram-negative bacteria, also called endotoxin] was higher in the bedridden patients. He attributed this to altered intestinal flora and more severe leaky gut syndrome in these patients.

    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.

    He emphasized how small the amount of GcMAF is that is injected in the patients (100 nanograms in 1 milliliter of physiological serum).
    The dosages have ranged between 25 and 100 nanograms per week. Three-quarters of his patients have had the full dosage.
    The duration of treatment of his patients at this time is 5 to 40 weeks, with an average of 15 weeks.
    He reported that 68 out of 100 are improved, and the symptoms improve essentially across the board.

    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.

    He also talked about IRIS (immune reconstitution inflammatory syndrome). This occurs in HIV patients who have been treated with GcMAF, and he attributed it to a heavily damaged immune system and the presence of infections with other pathogens in addition to HIV in these patients. It occurs when there is a repopulation of T cells. I think he said that 20-30% of his patients develop IRIS. In view of this, he tests his patients for coinfections, and he also monitors cytokines, C4a, and activated T cells. It is important to start with a low dose of GcMAF in patients who have the characteristics that would make them susceptible to developing IRIS.

    He said he doesn't have much data yet on the behavior of nagalase under GcMAF treatment, and hopes to have more next week, but at the present he could report that in 15 out of 18 patients for whom he has data, nagalase dropped from an average of 2.50 to an average of 1.87.

    I think that is pretty much what he said, except for basic introductory info about GcMAF, which I know you already know. 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
     

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