Thursday, October 17, 2013
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.
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Thank you as always for going to conferences and telling us about them. It means a lot.ReplyDelete
I am especially pleased with signs of collaboration with Lyme. Science needs this, and so does politics.
Things need to move a thousand times faster. All too many people, many sufferers included, are satisfied with a pace that will yield meaningful widespread treatments in no less than 100 years from now.
Here, her. As you know, PANDORA Org sees the overlap and similarities. We are contributing to a doctor from Alabama attending the ILADS conference. Ask around for her.ReplyDelete
Dr Horowitz MSIDS as a map for chronic diseases has a lot to offer patients other than those with Lyme Disease http://lookingatlyme.blogspot.co.uk/2012/05/msids-provides-map-for-chronic-diseases.html this links to video( second one) here http://lookingatlyme.blogspot.co.uk/2012/05/lyme-disease-forum-ny-21-may-2012.htmlReplyDelete
I thought one of Dr. Peterson's videos said that lyme patients had adifferent spinal fluid pattern and they wanted to find equivalent blood tests. But then there are a lot of tick borne diseases. citybugReplyDelete