Thursday, October 31, 2013

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.

Thursday, October 17, 2013

ILADS/San Diego

I am heading to San Diego for the ILADS conference on October 18-20. ILADS is a four-day conference on Lyme disease, its diagnosis and treatment. ILADS has their own dogma, attached to the long term use of antibiotics in treating Lyme and its coinfections. This is a long and large conference - and it has the feeling of representing "an Industry". It is always well attended by practitioners or researchers who have a big stake in the Industry (Professionals). In this way it is very similar to the IACFS/ME conference that is held every two years. Both conferences take a very broad approach in attempt to represent various constituencies.  The results are mixed - as this approach to conferences always lacks focus.

Patient-driven conferences like Invest in ME or the Physician’s Roundtable are completely different. There is no Industry to be supported. The Mount Sinai ME/CFS conference in November 2011 also took a more focused approach both in terms of subject and duration. There will be another Mount Sinai ME/CFS conference on November 20 chaired by Dr. Derek Enlander and including Dr. Nancy Klimas, Dr. Dan Peterson, Dr. Judy Mikovits, Dr. Eric Schadt and Enlander himself.

At this ILADS conference I will try to ferret out what I can, what is useful to me.

I am very interested to hear Dr. Richard Horowitz lead a section on treating multiple infectious diseases. This will be an extended preview of his book “Why Can’t I get Better? – Solving the mystery of Lyme and Chronic Disease”, which will be available on November 17.

Dr. Horowitz takes a broad view, embracing the complexities of these difficult illnesses with an umbrella framework that includes both viral and bacterial infections. He tries to think outside of the box and has shown a great curiosity over many years now. A recent lecture can be found here sponsored by Xymogen. In spite of the commercial aspect of this presentation, it advances his basic notions.

Dr. Burrascano will give an update on the Advanced Labs culture test. This is an important test and the CDC seems to want it to not exist.

Dr. Joseph Brewer will present a lecture on mycotoxins involvement in ME/CFS and his ongoing ideas of how to treat this. To me this is an important subject and I look forward to hearing Dr. Brewer.

Eva Sapi will provide an update on her Biofilm research.

Dr. Andy Kogelnik of the Open Medicine Institute will give a talk entitled, ”Clinical Research Networks: A Paradigm for Understanding Chronic Illness”. Dr. Kogelnik and the OPI/MERIT initiative have big plans. 

Various researchers will present immunologic side of Lyme disease – testing and treatment.  (I wonder if they know of the research of Dr. Sonya Marshall-Gradisnik?)

There always seems to be such a great disconnect between the Lyme community and the ME/CFS world. For me this is very hard to understand, as they seem to overlap so much. In a remarkable post, Cort Johnson brings us information that Simarron is looking for tick-born illnesses in Dr. Peterson’s samples. I wonder why it has taken so long.  I have never heard Dr. Peterson mention anything of tick born illness. Maybe Lipkin is finding something in this regard?

I have always been surprised at not ever seeing Dr. Horowtiz at a ME/CFS conference. He should be center stage. I did see Dr. Burrascano at a WPI conference in Reno in the summer of 2010, brought there by the phenomenon of XMRV. Since then a few ME/CFS physicians make an appearance at the ILADS conference, fueled by the larger viral and immunological research of Dr. Judy Mikovits. Presenters at ILADS have included Dr. Joseph Brewer, Dr. Jose Montoya, Dr. Neil Nathan and Dr. Kenny De Meirleir. (A De Meirleir lecture on GcMAF, similar to the one presented at ILADS last year, can be found here. GcMAF in Lyme disease has not been seen since Dr. Klinghardt proclaimed it a wonder drug several years ago. )

It has always been a mystery to me that at ME/CFS conferences, no mention is made of Lyme. This even holds true for the Invest in ME conference. Maybe it is time for getting Lyme doctors to ME/CFS conferences. Maybe Dr. Horowitz should make a presentation at the Mount Sinai Conference?

Among the many attendees at ILADS will be Dr. Judy Mikovits, Dr. Chitra Bhakta, Dr. Eric Gordon, and Dr. Karen Vrchota.