Friday, November 25, 2011

Mt. Sinai ME/CFS conference - Dr Eric Schadt lecture

Dr. Eric Schadt gave the first lecture at the Mt. Sinai ME/CFS Center conference on Sunday November 20, 2011. This conference was organized by Dr. Derek Enlander and his colleagues at Mt. Sinai Hospital in NYC.

Dr. Schadt was recently hired by Mt. Sinai Hospital to head their Department of Genetics and Multiscale program. Here is an article in the NY Times about Dr. Schadt at the time of this hire. This article and others describe Dr. Schadt's visionary ideas. The lecture delineates how he will approach ME/CFS in his lab. There is a profile of Dr. Schadt in Esquire here. Dr Schadt will work with his colleagues Dr. Ila Singh, a virologist, and Dr. Miriam Merad, an immunologist, to get at this horrible illness of ME/CFS. The Mt. Sinai ME/CFS Center for research and treatment was initiated by a generous gift from a patient of Dr. Enlander.

Information will be forthcoming on how the ME/CFS community can support the work at Mt. Sinai.

This audio and video was made by Peter and Nicholas Cairns.

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.

Thursday, November 17, 2011

Mt. Sinai conference - Rich van Konynenburg

The upcoming conference at Mt. Sinai (on Sunday November 20, 2011) is a step in the right direction. This conference, the first of the new Mt. Sinai ME/CFS treatment and research center, embraces the serious exchange of treatment and research ideas in ME/CFS. There are some new names here, and we look forward to hearing from them. There are also some more familiar figures. The interaction should be illuminating.

The conference will start at 11 and will feature five half-hour presentations by Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. Eric Schadt, Rich van Konenynburg and Dr. Merriam Merad. After a lunch break there will be a panel discussion with the participants. (Judy Mikovits was scheduled to join the panel discussion, but will be "unable to make it" as she was arrested on Friday, November 18th in her hometown in CA on a fugitive from justice charge.)

I was pleased to see the name of Rich van Konynenburg among the speakers. Rich is an "independent operator" in the ME/CFS world - and one of the best. Over the years, he has developed a very convincing biochemical explanation for the part that methylation blockage and glutathione depletion play in ME/CFS. Rich has existed on the periphery for too long. He needs to be brought into the discussion. Rich is a welcome addition to this list of speakers, and perhaps this exposure will get some traction for his ideas.

I have followed closely the work of Rich for a good number of years now. Rich has presented poster papers at each of the major ME/CFS conferences (and at various other conferences). Once in a blue moon, he is actually invited to speak, and to present his thesis on the connection of the methylation blockage and glutathione depletion in ME/CFS. His ideas are firmly based in biochemistry and very well might play an important part in understanding and penetrating this illness. Certainly Dr. Enlander believes in the reality of methylation blockage, and his formula for treatment involves elements either borrowed from Rich's theory or coincident with it. Other clinicians also are paying more attention.

Rich's presence at the recent IACFS/ME conference was very noticeable, as he seems willing and able to talk individually with people without prejudice. He is on his feet all day of the poster conferences, presenting in a nutshell his complex set of ideas. Why he has never been given a time slot to directly address a conference session I will never know. His ideas need further exposure.

Here is a article by Rich van Konynenburg on Phoenix Rising. A revision of the original simplified protocol and a discussion can be found here. Discussions of the methylation protocol can also be found on various ME/CFS forums.

The first time I observed Rich van Konynenburg in action was at the 2007 IACFS/ME in Ft. Lauderdale. At that point, attendees to the conference could come to an open microphone and ask questions directly to the panels. In general the panel members "froze up" with the clarity and persistence of Rich's (and others) questioning. It was obvious that the "ability" of the panel members to engage unfamiliar territory was limited. Rather than trying to come to terms with what Rich was suggesting, they changed the format at the next conference to written questions - and in this way the organizers could control (and eliminate) the questions that were more penetrating or "difficult". This "technique" is used more and more today by important people who are averse to things "entering in". My response has always been, "Let's hear more from this fellow".

Recently, Rich gave a three-hour long lecture at a conference in Sweden. It is available online in three sections and they can be accessed in the following videos. I recommend viewing it in parts, as it is well worth watching.

Treatment for this complex, yet measurable, dysfunction is relatively simple, and can be found in various places on the internet. Rich himself engages on various forums, discussing with patients and advocates the specifics of his ideas, disassociating himself from giving medical advice.

It becomes obvious that his interest in ME/CFS is a labor of love. Certainly he cannot be accused of making money off of his idea, as he is always "on his own dime". Instead we find that his motivation to "get involved" is similar to many others in this field. He has a friend who has the illness.

Rich also is free of the usual entanglements - as he is neither an academic researcher nor an ME/CFS clinician. Instead his background is in electrical engineering. In his retirement, he has turned his fine mind onto the problem of solving or getting to the source of ME/CFS. Actually, like other important contributors to the mechanisms of ME/CFS (Dr. John Chia comes to mind here with his revisiting of older UK research of enteroviral involvement in ME/CFS), these ideas on glutathione depletion are not new, but borrowed from practitioners in autism. Rich had the insight to see the connection. We will all benefit from his insights.

Monday, November 7, 2011

Mt Sinai ME/CFS Center - November 20, 2011 conference

A surprising amount of research and treatment into ME/CFS has been generated in the wake of the efforts of the WPI over the last few years. This is especially true of the last few months. Annette Whittemore and Judy Mikovits lit the spark and elevated ME/CFS to a level where it now gets fair consideration.

One of the most exciting pieces of recent news is the opening of an ME/CFS Center at Mount Sinai Hospital in NYC. This center is currently funded by a generous gift from a patient - with the possibility of matching gifts to come. The center is about to open - and the first conference is going to happen in two weeks - on November 2oth.

Mount Sinai is one of the major hospitals in NYC, and it is tremendous news that this center is opening - focusing on this difficult and debilitating illness. This is a dream come true. The last major CFS treatment and research center at an American university was run by Dr. Phillip K. Peterson at Hennepin County Hospital in Minneapolis in the 1990's. It closed, for unknown reasons, in 2000.

The main clinician at the Mount Sinai ME/CFS Center will be Dr. Derek Enlander. Dr. Enlander is a familiar name to all of us, and he is considered to be one of the very top clinicians making inroads into this disease. Dr. Enlander has treated patients with ME/CFS in the NY area since the mid- eighties, and he has always kept an open mind towards treatment modalities. While his clinical experience with ME/CFS is very deep and broad, Dr. Enlander also has a wider medical practice - and has taught at Mt. Sinai for many years. He is the perfect individual to coordinate a larger effort to get at this illness.

Additional senior faculty will be Dr. Ila Singh, who has recently been recruited by Mt. Sinai from Utah, and Dr. Eric Schadt, PhD. Here is an article on Dr. Schadt.

The clinical practice will employ various treatments currently being used by Dr.Enlander, including GcMAF, Ampligen, Hepapressin, and Immunoprop.

Some of the research will delve into genomics, and one current study is underway - and recruiting patients. You will remember that Dr. Enlander was quite close to Dr. Jonathan Kerr and Kerr's work in the UK. Dr. Schadt is well qualified to continue and expand this work. Most of us are familiar with Dr. Ila Singh, and welcome her back to NY.

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.

This enterprise is privately funded and has no connection to the recently announced CFI. We look forward to Dr. Enlander's participation on a larger stage. This is certainly a bit of good news.

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 Schadt. 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.

Registration $30 in advance, $40 at the door. The conference will be held in the Seminar Room, first floor, Icahn Institute, Mount Sinai Research Building, 1425 Madison Avenue (at 98th st), NYC.