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Mt Sinai conference - Rich van Konynenburg

Discussion in 'Detox: Methylation; B12; Glutathione; Chelation' started by Sasha, Nov 19, 2011.

  1. Sasha

    Sasha Fine, thank you

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    CFS Patient Advocate has a great post supporting Rich and his upcoming presentation at tomorrow's conference, here.

    He's right, it's nuts that it's taken so long for Rich to get a speaking spot at a conference rather than being shuffled off to the poster sessions. We're very lucky to have Rich in our corner.
     
    madietodd and anne_likes_red like this.
  2. Dreambirdie

    Dreambirdie work in progress

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    Yes, Rich has done a lot for this community. I'm happy to see he will be speaking at the conference.
     
  3. Sing

    Sing Senior Member

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    Yes, I agree wholeheartedly with the first commentator on the Patient Advocate's blog, that Rich is "a gentleman and a scholar". He brings a tone of optimism and good feeling to the area of research, treatment and patient help, which is greatly needed, as well as a sophisticated biochemical knowledge which I am sure will play an important part in unravelling the dynamics of ME/CFS.
     
  4. Marg

    Marg Senior Member

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    All I can say is it is about time. Go Rich go!
     
  5. Sing

    Sing Senior Member

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    Does anyone have any news about the conference today? There is another thread on this subject but I don't know where to find it. Please give us the news if you went!
     
  6. madietodd

    madietodd Senior Member

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    Rich was FABULOUS!!! Dr. Endlander made a few references to "My good friend Rich" and Rich's "great work".

    The conference was wonderful, and kinda overwhelming, and packed with information I certainly won't understand tonight. There were talks about the center's commitment to:

    Studying the genomes of patients and crunching that information to find patterns of dysfunctions and subgroups, Schadt (working for the new center)
    Researching Immunology issues in CFS, Merad (working for the new center)
    Ampligen - information about it, Hemispherix
    GcMaf - information about it, DeMeirlier
    Methylation Cycle's role in CFS, Von Konynenburg
    Overview of current diagnostic and treatment options, Endlander (director of the new center)

    The conference was recorded, but I didn't get a chance to ask when that would be available. We were give a CD called ME/CFS update 2011, which I haven't looked at.
     
  7. beaker

    beaker CFS/ME 1986

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    On the previous thread about the conference I asked this :
    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
    !


    Was there any information given at the conference about either foundation ?
    Thank you .
     
  8. madietodd

    madietodd Senior Member

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    Beaker, I'm sorry I had no chance to talk privately with Dr. Enlander (or anybody else). This was a launch very focused on the new CFS research center, and nothing was said about Dr. Enlander's personal charities.

    Would you like some help trying to get this information? I had a lot of email contact with Dr. Enlander's staff prior to the conference; I could try asking those people for information.

    Madie
     
  9. richvank

    richvank Senior Member

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    Hi, all.

    Thanks to you for all the votes of confidence. Here is a summary of Dr. de Meirleir's talk on GcMAF at the Mt. Sinai meeting. I wrote it in response to questions beforehand from Sushi, and am reposting it on this thread:

    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, the patients 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
     
  10. Sasha

    Sasha Fine, thank you

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    Hi Rich - how did your talk go? Did you get any sense of whether you were getting interest from other scientists (if you're able to say)?

    We're all hoping so!
     
  11. Sasha

    Sasha Fine, thank you

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    Hi Rich - how did your talk go? Did you get any sense of whether you were getting interest from other scientists (if you're able to say)?

    We're all hoping so!
     
  12. Roy S

    Roy S former DC ME/CFS lobbyist

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    I'm wondering if there was any information on any proposed rituximab trials.
     
  13. denlander

    denlander

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    Rich Von Konynenburg

    I have been in email contact with Rich for nearly a decade. We met in person for the first time at the Mount Sinai meeting yesterday, a standing only crowd. It was my pleasure and privilege to invite him to speak. We use have used his methylation cycle theory in our treatment protocol for 10 years.
    Yes I agree, the politicians in the various groups continuously insulted him, overlooking his ability and knowledge. They relegated him time and time again to a poster in some out of the way hallway.
    Like all of the other speakers, he was given a half hour time slot. He spoke beautifully. He was included in the panel that fielded questions at the end of the meeting.
    It was a good meeting made even better by Rich

    Derek Enlander MD
    New York
     
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  14. denlander

    denlander

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    Yes as we reported at the Sinai Meeting Dr David Bell and I will attempt to replicate the Retuximab study.
    Derek Enlander MD
     
    merylg, Sing, Ember and 2 others like this.
  15. currer

    currer Senior Member

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    I am very glad to hear that Dr Bell and Dr Enlander will do a rituximab trial.

    But this is too important a matter to be left just to independent doctors with limited budgets.

    Where are the US government health agencies on this? There are a million ME/CFS sufferers in the US.

    Surely, given the dramatic improvement in many patients following rituximab the governmental health agencies ought to be taking an interest?
     
  16. Sasha

    Sasha Fine, thank you

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    Thanks, Dr Enlander - it's good to know that you support Rich and use his theory in your protocol. I think we all wish that there were more doctors using it to whom we could all have access. Without support even of a general practitioner to get the appropriate blood tests and so on, most of us are on our own with it.
     
  17. richvank

    richvank Senior Member

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    Hi, Sasha.

    Dr. Enlander was very gracious, and I enjoyed finally being able to shake his hand, after all these years. I had the opportunity to say what I wanted to say. I passed out hard-copy handouts, with references (including the Swedish seminar video link) so that if people were interested in more details, they can find them. It's difficult to say what the impact was on the other scientists. If you've read the Patient Advocate's report on another thread, you can see that the scientists who are joining the new Mt. Sinai ME/CFS research center are top-flight people. I would say that Eric Schadt, in particular, is in the creative genius category, and I don't say that about very many people. He said that he will use a data-driven approach to the research. As I understand it, this will involve using the approach he has successfully used with other disorders. He doesn't go in with a hypothesis, but analyzes the genetic data (and I think he uses SNPs in the entire genome, rather than gene expression) using algorithms that are able to find associations between various SNPs. At that point, he applies various hypotheses to develop an understanding of what the data are telling him. So I would hope that at that stage, he might look to see if the GD-MCB hypothesis would make sense of the data. Perhaps the two approaches will converge, but we will have to wait to see.

    Miriam Merad is very up-to-speed on new developments in immunology. It sounded as though she is going to start out by working to see if ME/CFS is an autoinflammatory disorder.
    I can't say that I understood everything she said, as immunology is progressing rapidly, and I have not kept up.

    I think that just getting to meet one another and to hear each other's perspective was very helpful. As was noted, both Eric and Miriam are new to the ME/CFS field. They don't have a lot of experience with it yet, but they should be able to bring new approaches, and I think that's a good thing. They are serious scientists, and I very much welcome the interaction.

    Best regards,

    Rich
     
    Sing likes this.
  18. Snow Leopard

    Snow Leopard Senior Member

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    Excellent to hear about new scientists dedicated to the field. :thumbsup:
     
    Sing likes this.
  19. beaker

    beaker CFS/ME 1986

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    Yes ! That would be fantastic. I'm sure I'm not the only one who would be interested

    Thank you .
     
  20. Sasha

    Sasha Fine, thank you

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    Thanks, Rich - that all sounds very promising. Thanks for going to the conference and once again putting lots of effort in on our behalf!
     
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