Mount Sinai ME/CFS conference - November 20, 2013

Dr. Derek Enlander is chairing an ME/CFS treatment conference at Mount Sinai in New York City on Wednesday, November 20, 2013. This one day conference will include presentations by Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Dr. Enlander himself. A panel discussion including the speakers as well as Dr. Frank Ruscetti and Christine Becker will occur at the end of the day. The emphasis will be on communication and interaction.

(The conference takes place in the Academy of Medicine, 1215 Fifth Avenue. Registration fee is $150 for physicians and $50 for patients. The conference runs from 11-4.)

It is my obervation that this conference is an outgrowth of a Simmaron research discussion held prior to the ME/CFS FDA meeting in May. At that time, Dr. Dan Peterson generously organized a pre-meeting open-format treatment discussion involving both Dr. Klimas and Dr. Enlander, along with a number of other clinicians, researchers and patients. The discussion was a lively one, and free-wheeling, just the kind of discussions necessary to push ideas along. Dr. Peterson's early morning meeting was the only item of real interest at this FDA conference and it is my feeling that this Mount Sinai conference is an attempt to build on that Simmaron discussion.

This is the second conference arranged by Dr. Enlander and the ME/CFS Center at Mount Sinai. Dr. Enlander is one of a very few physicians who is attached to a major university hospital doing research on this difficult illness. The last Mount Sinai ME/CFS Center conference was held two years ago and featured several very powerful and important lectures. Foremost was a talk by Dr. Eric Schadt that can be found here. Additonally Rich van Konenynberg gave a fine presentation on his mehtylation blockage/glutathione depletion ideas. Rich, who died a year later, is sorely missed by the patient community and many others who experienced the very rare character of this man. Rich's fully articulated three-hour lecture in Sweden can be found here. Dr. Kenny De Meirleir's often referenced talk on GcMAF can be found here. Dr. Enlander himself gave a fine presentation of his treatment strategy.

It is well known that Mount Sinai received a generous research gift from one of Dr. Enlander's patients, thus fueling the ongoing ME/CFS research at this center. It is less well known that these conferences at Mount Sinai, with all their very great importance, are constructed on a shoe string. It is time for someone else to step forward and help with this conference, especially considering the reality that very few of these kinds of discussions are ongoing in the field of ME/CFS treatment. This conference has very great potential to expand and ignite substantial treatment discussions - but someone is going to have to help Dr. Enlander in order for this conference format to reach its full potential.

For those readers who are not familiar with Dr. Enlander, here is a short radio interview with him.

"The Garden"

In the course of my job as patient advocate for my daughter, I travel to various places - CA, London, New York City, Ottawa, Brussels. Most of the time I am mired down in patient advocate work, which is only partially rewarding. One positive reality is that I do get to meet many extraordinary people - and this could certainly be the subject of another and longer post. In these travels there are moments of relief -  ducking into the National Gallery to view my favorite painting (Titian's The Death of Acteon), a hot dog with mustard and sauerkraut on the corner of 69th and Lexington on a sweltering day, checking out the Gauguin painting at the Indianapolis Museum of Art, or going to an Orchestra concert in Minneapolis.

Gauguin, 1889

Throughout the mid-West there are these extraordinary museums reflecting broad and deep collecting interests of past inhabitants of these towns - Minneapolis, Detroit, Cleveland, Cincinnati, and St. Louis.

This summer I had the privilege of visiting with Dr. Dale Guyer at his Institute of Molecular Medicine in Indianapolis. I really admire this clinician. I have learned fundamental approaches to ME/CFS from him. At the end of my time with him, I asked if I could have a picture taken with him. Dr. Guyer suggested that we go out into "The Garden" for the picture.

I stepped out back of his clinic and encountered an astonishing world.

Chris Cairns and Dr. Dale Guyer

In the approximately 1/2 acre behind his clinic, Dr. Guyer has planted a vast array of conifers and Japanese Maples. Dr. Guyer explained to me that the two plants directly behind us in the above photo were recently added and are of a species that is quite rare, yet can exist in the environment of Indianapolis.

I can only assume that Dr. Guyer has made every single decision in regards to the plantings and combinations of this rare and beautiful garden. One can discern from the photos the care taken regarding color, variety, size and placement of each and every plant, stone and path. The reality is very powerful. Everything is calculated to deliver the greatest visual and emotional impact. Nothing is haphazard and the entirety has a sense of oneness, of great unity. It is like a gigantic three dimensional painting.

It occurs to me also that this garden is an extension of Dr. Guyer's skill and experience as a physician. Certainly the garden gives a clear insight into the complexity of his personality. His staff jokes that when he gets really refined in his medical practice, he will just send his patients out back to sit, resonate and heal in the environment.

I spent some time walking around "The Garden" and took a few pictures. My only regret was that I did not stay longer, and I have thought about this space and its effect on me a great deal since then. It is very seldom that I am swept away by a spot and enter into a suspended space where I am lost or do not know where I am. This is the profound effect of this garden as you walk into its midst. Suddenly you are transported to - who knows where? It is another world, a world suspended from the raucous existence of modern life.

Dr. Guyer's garden reminded me of another favorite destination of mine, a place that I have not been for many years, but to which I yearn to return: Bok Gardens and Tower in Lake Wales, FL. Although Bok Tower is much different than Dr. Guyer's garden, it has the same powerful effect on the visitor. Much of the impact comes from not expecting it. Bok Garden takes you into a suspended world where you are suddenly and completely detached from yourself. I suppose many people, like me, return there for solace and removal from life's travails - and to reacquire a bit of peace or peace of mind.

I asked Dr. Guyer what he does in his Garden? He says that he sits there in the evening with a glass of wine.

It is not possible this morning to leave this appreciation of Dr. Dale Guyer and his garden without mentioning a recent article that appeared this morning. The article is found here and concerns gut ecology. Both Dr. Guyer and Dr. Kenny De Meirleir  have emphasized the need to heal the gut. It is a central issue in ME/CFS to both of them. Recent research into the gut environment begins to confirm what a number of ME/CFS physicians and researchers believe - that gut ecology might very well be at the center of this illness. If one wonders - as I do - why MAF 314 brings improvement to the patients who have access to it, this article suggests an answer.