Monday, November 21, 2011

Mt. Sinai ME/CFS conference report - Sunday November 20, 2011


It was with an air of anticipation that I walked up 5th Avenue early on a fine Sunday morning, heading to the ME/CFS conference at Mt. Sinai Hospital. All my hopes and anticipations were realized - and were exceeded, very much exceeded. It was a remarkable day and we have Dr. Derek Enlander and his colleagues at Mt. Sinai to thank for this.


The conference began at 11 in the morning and ran until 4:30. Dr. Enlander set the agenda and guided the series of lectures in his own respectful and low-key fashion. Like Dr. Malcolm Hooper, Dr. Enlander employs understatement, refusing to draw disproportionate attention to himself. Yet, Dr. Enlander has a manner of presentation that allows his steady, confident personality to be felt. As usual Dr. Enlander is “all there, all the time”, as has been his habit for a long time. Talk to any of his patients and you will get this same appreciation and respect. I was tremendously impressed with how he ran this conference. All speakers kept to the schedule and the conference ran like clockwork.


This was surprising to me - as the conference had only been organized in the last three weeks. From the modest beginnings of a “collaborative meeting” between Dr. David Bell and Dr. Derek Enlander, this situation quickly and seemingly naturally morphed into a full day conference, first with the addition of Dr. Kenny De Meirleir and later Dr. Eric Schadt and Dr Miriam Merad. Additional speakers were Rich van Konynenburg, an independent researcher, and Dr. Strayer from Hemispherix. Dr. David Bell was unable to attend the conference due to illness, but he is solidly on board with this effort – and we will see him at the next conference. Dr. John Chia was invited to the conference but was unable to attend. Look for him in the future.


This event followed the format of the InvestinME conference in the UK, one day filled with hard-hitting research and treatment presentations. If anything, this day was even more deeply focused - which is really saying something. I am a great admirer of Richard and Pia Simpson, and what they give us with the annual InvestinME conference in London.


In the first lecture, Dr. Eric Schadt gave an overview of his systems biology approach to research. This will be applied to ME/CFS in order to get at the underlying pathology. Dr Schadt, a geneticist, is quite astonishing in his approach and presentation. Dr. Schadt brings a great deal to the table. He is seen as the very cutting edge of figuring out complex relationships. Part of Dr. Schadt's work will be to continue and expand the research of Jonathan Kerr. Here is an article in Esquire about Dr. Schadt.


Dr. Merad, an immunologist at Mt. Sinai, spoke of her work in innate immunity and its relations to ME/CFS. Here is a biography of Dr. Merad.


Both of these researchers are new to the ME/CFS world and are part of the research team being assembled at Mt. Sinai. Ila Singh, a virologist, has also recently joined the Mt. Sinai research team. Many of us are familiar with Dr. Singh and her work in XMRV. Dr. Singh was unable to make a presentation as she was moving from Utah. She will certainly be present at the next conference.


The Mt. Sinai research team includes a geneticist, an immunologist and a virologist, all three working closely together on this project. The amazing thing is that here are three researchers at the same research hospital, all pledged to work together in a collaborative fashion towards cracking this illness. This is unheard of in the world of ME/CFS. This indicates a seismic shift. While Dr. Schadt and Dr. Merad gave indications that they do not know much about ME/CFS, they emphasized that its complexity is not that much different from other situations on which they have worked. Their response to the patients was indeed sympathetic and the two researchers must have learned a great deal about the nature of the illness and the difficulties that afflict these patients.


During the wrap-up panel discussion, Hillary Johnson asked a few pointed questions that, as usual for her, were extremely illuminating. Hillary cuts to the quick - and a sense and weight of history attends her every word. Hillary stands like a rock for the long abused patients with this illness. She is a wonder to me. Her question was : Weren't these researchers afraid to go down this road of ME/CFS research? - a road fraught with peril and the remains of many previous researchers? The Mt. Sinai researchers seemed genuinely unfazed by this. Their answer was no, no they were not hesitant. Instead, they were eager.


Hillary also insistently sounded out the depth of their commitment (in terms of hours and staff). This is a very tough question to ask anyone, essentially asking are you for real or are you a bunch of phonies? In other words, was this a sidelight for them? Both the Mt. Sinai researchers expressed in very clear terms that this was going to be a serious effort with various researchers in their labs working steadily on the project. Obviously this is a reflection of the money committed to do this work. Dr. Schadt said he had just hired twelve new people for his lab and that some of them would be working full-time on ME/CFS. It was amazing to hear this, just amazing.


Mt. Sinai has placed a bet here - and I believe that it is a winning bet.


Dr. De Meirleir flew in from Brussels for the day and gave an excellent presentation on his compassionate use of GcMAF in ME/CFS. His preliminary data, reported elsewhere, indicated that 68 of 108 patients showed improvement in at least two of the seven major categories of ME/CFS. More data will be forthcoming soon, with larger numbers of patients.


Dr. Strayer of Hemispherix spoke about past and ongoing trials of Ampligen. Dr Enlander is running an Ampligen trial in NY, joining those in Utah, NV and NC.


Rich van Konynenburg gave a fine and compressed version of his glutathione depletion and methylation blockage concept, as applied to ME/CFS. One can see an extended version of his lecture in my previous blog post. Rich can talk in a very convincing way “until the cows come home” and he was there at the end talking to patients and professionals until the lights were turned out. What a fine addition Rich was to this conference!


Dr. Enlander himself gave the final lecture, presenting information on his treatment protocol and the various options available at present - and future considerations.


The seminar room was at capacity - about eighty people, with the overflow sitting on the floor. There was a sense of anticipation and excitement amongst the attendees. This Mt. Sinai conference presented no bullshit, no fluff -just straightforward research and treatment possibilities. One can imagine an expansion with a clinician/researcher brain-storming session the evening before, combined with a dinner. One can clearly see where this is going now.


This conference happened at the right time and involved the right people.


It was a bit surprising that Fred Friedberg, the head of the IACFSME association took a "pass" on this conference. He lives 45 minutes away and saw fit to “not show up”. Others from the CAA were noticeably missing. Lipkin could have walked over, but decided not to. While they were not particularly "missed", I think at the next conference, perhaps in six months, we will save a seat for them to watch a video in an adjoining room. For the CAA itself we will reserve a place on the floor in the back. The next conference is going to have to be in a larger auditorium - and it will also be packed.


It is important to emphasize that this Mt. Sinai Center has no connection, as yet, to the CFI - directed by Ian Lipkin at Columbia. This CFI effort on the part of the Hutchins family, involving Harvard, Princeton, Yale and Duke, holds out the possibility of further serious and deep research into this illness. We can only hope for CFI success, and that they have the inclination to cooperate with their colleagues at Mt. Sinai. The two initiatives have a great deal to share - and it is time to set aside egos.


The organizers of this Mt. Sinai conference indicated that the doors are open – that they are “open to suggestion” in terms of alliances and collaborations. It was noticeable that Dr. Maureen Hanson and Dr. Susan Levine were in the audience, both of whom I imagine would be interested in cooperating in this Mt. Sinai effort. Who wouldn’t? This was a very exciting day.


The conference was videotaped and audio recorded by Peter and Nicholas Cairns. The various lectures will be put online and on DVD - and perhaps in the future some short preview interviews can be filmed of the major figures in this Mt. Sinai effort. I am a great believer in getting key pieces of information out to the larger world, and short “impact videos” are one economical and efficient way to do this. This also works well for fund-raising.


I leave to the end of this post a very important acknowledgement. This Mt. Sinai ME/CFS Center is fueled by a generous gift of Dwight Merriman. None of this would be happening without this gift. It is a matching gift, and soon we will be given instruction how we can contribute to this effort that is going to have such a long reach.


At the very end of the conference, there was a profound moment where Dr. Enlander, in response to a question, extemporaneously spoke for about two minutes on the extreme severity of this illness and its ruinous effects on patients. It is clear that this physician has a deep empathy for the subject.

38 comments:

  1. Free Judy Mikovits. It was she that helped move much of the recognision of this illness forward. She does not deserve to be in jail.

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  2. Did both Dr. Friedberg and Dr. Lipkin speak directly with you regarding why they did not attend? If they did not, you don't know why they did not attend. Do you know why Dr. Chia did not attend? You don't seem upset about that in quite the same way. Perhaps these other researchers had other commitments made prior to three weeks ago or possibly they were ill as well.

    Advocates cannot expect people to work together and make cheap shots at the same time. It is generally counterproductive.

    Just for the record Dr. Enlander has been quite vocal in saying the research at Mt. Sinai will have nothing to do with psychiatry. Perhaps they were not invited.

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  3. Thanks very much for reporting on this for all of those of us who can't attend these things (I live in the UK). We're very grateful to you. This sounds a very hopeful new venture.

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  4. Chris,
    Thank you for your observations and for reporting on this conference. Once again you and your family are giving your time and energy to help pass on information.
    In these troubling times, your efforts are much appreciated.
    ps: I also enjoyed your thoughts on future seating arrangements...

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  5. Judy MIkovits was scheduled to speak at the Q and A. Her absence should have been noted.

    I bet many in attendance, including to his great credit Dr. Enlander who invited her, wanted to hear what she had to say.

    Mikovits was arrested on Friday night, I think unjustly, and this community deprived of her passion and insight.

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  6. I have tears in my eyes. This is great news for the ME/CFS community. After the WPI debacle, it is wonderful to have reasons to look forward with hope again. I am so grateful to all the doctors and researchers involved in this effort, whatever their level of commitment. I hope the disease will prove intriguing enough to draw them in and keep them interested even when the stigma and politics surrounding the disease make the going rough. Thank you, patient advocate, for your report! You have a lucky daughter.

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  7. For KAL:

    A little geography lesson: Columbia is within walking distance of Mt. Sinai. Stony Brook is an easy ride on the LIRR. Irvine, CA is 3000 miles away. Perhaps Dr. Lipkin and Friedberg have excellent reasons for not attending but there is little question that it would have been much easier for them to attend than for Dr. Chia. Thus, it is far more disappointing that high profile locals would not attend than someone having to fly across the country. However, as this geared towards substantive research, I am not sure what Dr. Friedberg would be able to contribute.

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  8. Thank you so much Chris for this summary. A huge ray of hope so need right now!

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  9. Do we know the amount of Dwight Merriman's contribution to Mt. Sinai? No program will get too far if it's underfunded.

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  10. @Kal; I think it is because doctor Chia is on the other side of the country (the West Coast) and those two doctors are very nearby.

    What you said about prior commitments is true though, we can't be expected to make judgments of someone's 'seriousness' off one conference, but rather extended patterns of actions.

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  11. Chris, great post...thanks for getting it out so fast. I'm bummed I was not able to make it and missed seeing everybody. I look forward to the video! Go Dr. E!!!

    All the Best,
    Karen Ravitz

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  12. Do we know if Dr. Lipkin and Friedberg were even formally invited? I would like to know more before passing any judgements on their absence. Regardless, thanks to the Patient Advocate for attending and for posting this summary!

    One question: was Rituximab discussed at all?

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  13. Thank you Chris once again for taking the time to go to this meeting and for painting us all such a great picture of events. You and your family are very much appreciated.

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  14. Thanks Chris again for covering this...
    and Thanks again to Peter (whom I've met) and Nicholas for helping with the video.

    Those of us that have XMRV/HGRV antibodies
    defintitely missed Dr. Judy's input and I HOPE thewre WILL be a place for her at the Next Conference also... with many getting better taking ARVs, including Dr Snyderman and Dr Jamie that WAS going to attend.

    Many of us have suffered a relapse in our Energy envelope due to recent events..
    We hope that the thousands of us that have Retroviral antibodies PLUS many coinfections will also have our concerns addressed. Whatever we have, as it currently has NO NAME Yet...and we are not being treated by Dr's...

    PS: I agree about the video viewing and the separate room if not back of the room for the others mentioned.

    The rest of us happily await the posting of the video of this event for the patients that could not have obviously fit in the room had they had the money or health to travel there... Thanks for everyone that did and Thanks to those that put it on.. and Bless the attendees for the dedicated.

    Still Waiting...

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  15. Thanks much, Chris! This is certainly a game changer. A little FRIENDLY rivalry might not be a bad thing, either. Who knows. This is all dizzyingly good news at a time when good news was much needed. What a ride!

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  16. This does sound promising, a very much needed beam of hope. It's heartening to hear that funding and talented scientists will be working on this. In a situation where progress can't come soon enough, thank you for focusing on the positive and the hopeful. The tireless efforts of you and your family are a gift to patients.

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  17. Chris, you are simply a very lovely man. Thank you for so much hope at this time. And to Dr. Enlander, who is also lovely, of course, and to all those involved -- as well as those who couldn't attend but are in our hearts, too.

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  18. I believe, as do you, that not attending says a great deal regarding ones commitment or even worthiness of our fragile trust. Lipkin?

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  19. How could I forget in my earlier message, Anon. 6pm:

    Huge thanks to Dwight Merriman!

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  20. Thanks for a desperately needed piece of good news.

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  21. Hope, I so needed that. Whenever I see you have written in your blog I quickly go and read it. Thank-you for all you do and your excellent writing style. Easy to read and take in. I am very appreciative of all you do.

    Thank-you, Lynn

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  22. Hey, how do we get in touch with Dwight Merriman? I'd like to send him a thank you card. And do we know how much he donated and why he has the interest?

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  23. Really? No mention of Dr. Mikovits? Wow... surely there must have been some discussion of what is going on. Disappointing...

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  24. Many thanks for all of the great information in this post. I am excited about this new research taking place, and as you, hope that both(Enlander and Lipkin) can join forces, as two usually accomplish more than one.

    Secondly, I am most distressed about our lack of information regarding Judy Mikovits. I am hoping things on the left coast will simmer down.

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  25. I must comment here, is Mr. Merriman open to some sort of thank you from the ME/CFS patient community? Or maybe the scientific community is enough. Either way, it would be delightful to know.

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  26. This is a very hopeful sign of a very much needed effort, ambitious, yet realistic, committed, far-reaching and a big "up" for all of us with ME/CFS, who wished to attend, but simply could not do it.

    I'm avidly awaiting the video, and welcome all summaries. Thanks very much to this excellent patient advocate and blogger for another well-done post.

    I am quite dismayed that Dr. Mikovits was "otherwise detained," in a California jail. Her input would have added another area of knowledge about this disease.

    Hopefully, she will be out and about and able to continue her virological work.

    Looking forward to the video and very interested in the information that will come out of this terrific endeavor.

    And so much thanks to the benefactor, Dwight Merriman.

    It is a shame that the government is not forthcoming with the funding, but I am so appreciative of this generous donation. I'm sure all ME/CFS sufferers are glad to hear about this and await the findings.

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  27. Thanks Chris! Great to have the atmosphere reported, while we wait with bated breath for the video.

    Hey folks, take a minute or two to think good thoughts for Judy at 21:30 UT (13:30 Pacific) and send some positive energy over to Ventura.

    Yes, I know I'm an old hippy...

    Jace x

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  28. Thank you, Chris, for another helpful, focussed column. I feel that you are effectively being the Patient Advocate for all of us, not only your daughter. I look forward to your reporting to pull together the action and to indicate what will be coming.

    Sing

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  29. i cried reading this.

    hope springs eternal,
    rivka

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  30. I am disgusted that there seems to have been no mention of Dr. Mikovitz, or how about a MENTION of a possible retrovirus underlying all CFS symptoms? There is still evidence of a retrovirus on the table. Indeed it may be spreading around the lab tables of the world. Will we please get Dr. Shyh-Ching Lo to join our efforts? He can validate the retrovirus issue.
    http://www.masscfids.org/research/recent-research/19/295

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  31. "Those of us that have XMRV/HGRV antibodies"

    By which test? Judy says the VIPdx tests were worthless.

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  32. Hi Chris Thanks for the excellent report and thanks to Dr. Enlander and those others who participated.

    @Tina Tidmore: I think it would be great if we could send a card to Dwight Merriman, one to the the Mt. Sinai Team, and one to Dr. Enlander himself. A lot of people have been using Ecards (such as by groupcard.com) lately so it shouldn't be hard to do.

    RE: The WPI and Dr. Mikovits, I think it would be inappropriate of Chris to just have a throwaway line here or there about it.

    -How does that help matters? If Chris wants to cover it, it is probably better to devote an entire entry to it where it can be done with a level of thoroughness and thoughtfulness.

    But this is, by your account, a really auspicious situation! I hope those people who are saddened by the situation w/ WPI and Dr. Mikovits (which includes me definitely...) can take a little solace in seeing a project of this caliber going forward.

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  33. Any idea on when video of seminar of Nov. 20 will be ready and how we can get it?

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  34. I am grateful to Dwight Merriman for his very generous kind gift.

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  35. Dr Enlander in his summary of etiology (causes of the disease) referred to retrovirus in depth with a electronmicrograph of the XMRV virus. He not only referred to the history of Judy's work at WPI, he referred to the subsequent battle of researchers, to Harvey Alter and MLV,and to the historic work of Elaine deFreitas, with a replica of her historic paper . If you were not present at the meeting it would be best to refrain from mistaken comment....
    It was not appropriate to pour hot coals on the jail issue by entering this debate at the meeting,she was fighting for a bail hearing, creating dissent may have caused further problem. Judy's plight caused great sadness to most . ............
    Dr Enlander had already expressed his attitude by inviting Judy and Jamie. ....
    The speakers were magnificent

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  36. I also would like to know if rituximab was discussed. There was an interesting paper from 2010 recently discussed on mecfsforums.com in "Other health news". The study found that rituximab eliminates EBV from the blood and bone marrow (the latter being the reservoir--previously only a marrow transplant was known to be able to do that), and that treatment success of rituximab in rheumatoid arthritis patients was very highly dependent upon pretreatment EBV status.

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  37. Retuximab was discussed in my paper with refernce to the Norwegian study, as was Ampligen, GcMaf, Maf 341, Maf 878, CMX 001 etc. We, Dr David Bell and I, would like to replicate the Retuximab study within the new Mount Sinai ME/CFS Center. The cost of the drug is horrendous and would require extra funds to be raised.

    Derek Enlander MD
    New York

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