Thursday, May 30, 2013

Linda Tannenbaum at InvestinME 2013


Linda Tannenbaum gave the pre-conference dinner presentation at the 2013 InvestinME conference here in London tonight.

The InvestinME conference is organized by Pia and Richard Simpson and their supporters and allies. It is a one-day biomedical conference on ME, and it offers the best, most immediate information on research and treatment into this illness. The dinner comes at the end of a pre-conference day where 39 researchers and clinicians met with collaboration in mind. This year's all-day private session focussed on "Infections and Immunity in Myalgic Encephalomyelitis".

Linda Tannenbaum is the Executive Director of the Open Medicine Institute Foundation in Mountain View, CA. She is also on the board of Simmaron Research. These two entities represent the working relationship/mutual admiration between Dr. Dan Peterson and Dr. Andy Kolgenik. Additionally, with her husband, Linda Tannenbaum founded the Neuroimmune Disease Alliance (NIDA)

Linda Tannenbaum's talk was short and sweet (powerful). She emphasized immediately the collaborative nature of the OMI. The Open Medicine Institute sponsored a forum in June 2012 in NY from which the framework of the Open Medicine Institute - ME Roundtable on Immunology and Treament (OMI-MERIT) was formulated. Twenty seven scientists met for two and a half days, pounding out an agenda as to how best to attack this illness in a collaborative fashion.

This OMI-MERIT group is in a hurry and looking for answers and treatments now. Their funding will be provided by private grants and initiatives. They are not willing to wait one hundred years for the government to wake up and maybe do something. Ms. Tannenbaum stated her belief that this very moment is the best time in history to get at the heart of this issue. OMI announced several weeks ago the receipt of a grant for one million dollars from the Edward Evans Foundation. She listed some of the studies and priorities of the OMI-MERIT research which can be found here. Astonishingly, OMI is promising trial or study results in one year. Foremost among the projects is a gene study with Ron Davis. My modest suggestion would be to add Eric Schadt and the ME/CFS Center at Mt. Sinai to the mix. The ME/CFS Center is directed by Dr. Derek Enlander and funded by a one million dollar grant from one of his patients. It is in the midst of an important Post-exertional malaise study.

The Foundation's goals are quite large and further research funding/grants are being sought. The figure I heard was quite large, although I am not confident enough that I got it straight to quote it at this time. Suffice it to say that they understand that these efforts need big research dollars.

Ms.Tannenbaum's own project with NIMA is to test a herbal medicinal in ME/CFS patients. This will be the first in a set of small, low budget pilot studies of various compounds. This is a very good idea and I, myself, would suggest looking at MAF 314 or something similar (Think Gregor Reid), Oxymatrine, Artesunate, Vasointestinal peptide, Trophic Factor, cell signaling factors and Anatabloc.

OMI is also hammering out a set of tests to routinely run on ME/CFS patients, a test protocol that could be used by others. In this fashion maybe everyone could get on the same page. I have ideas here, too, based on my own experience.

Invest in ME made an insightful choice in having Linda Tannenbaum give this talk at this year's conference. The talk inspires a great deal of hope. Tomorrow we will see presentations from Simmaron Research and OMI in talks by Dr. Dan Peterson, Dr. Andy Kolgenik, and Don Staines.

I have been aware of Dr. Kolgenik's aspiration in regards to expansive research into diagnosis and treatment of this illness.  It seems that now the goods are being delivered. This large collaborative effort very well might prove to be both a fruitful and growing one.

3 comments:

  1. Thank you! I couldn't make the conference this year and have been looking for any updates.

    Your descriptions always make me feel as if I am there and greatly appreciated!

    Wonderful to hear " It seems that now the goods are being delivered. This large collaborative effort very well might prove to be both a fruitful and growing one"

    Thanks to Pia and Richard Simpson for organising the conference each year.

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  2. Thanks, Chris - I wish we could all be at the conference. It sounds great.

    I really like the sense of urgency that OMI seem to feel and that our governments really don't.

    It matters to me, and to other patients, whether we get out of bed this year or ten years down the line.

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  3. AN EASY WAY TO SAY THANKS TO THE OPEN MEDICINE INSTITUTE'S FUNDERS - AND LINDA TANNENBAUM!
    Thank you for posting this very interesting and upbeat information! Linda Tannenbaum is indeed a go-getter; in the emails I've exchanged with her, she comes across with the same infectious optimism and drive that she showed you in her opening talk. AND she is delivering results - the best part!

    FYI Linda will be presenting the Thank You card signed by over 125 patients around the world, to the Edward P. Evans Foundation, while at the conference. Their Executive Director was blown away by the global, heartfelt expressions of appreciation. That card is now closed, but if anyone would like to sign the Thank You card to the latest benefactor of the Open Medicine Institute: the VMware Foundation, you can do so at this link: http://www.groupcard.com/c/ZjA2X_lwClv

    It just takes a minute, and as Linda has frequently said, it makes a BIG difference to let their sponsors know our stories; grasp the enormity of the disability from ME/CFS; and understand the global benefit of their support of the Open Medicine Institute. The VMware card has just over 50 signatures - it would be lovely to bump it up another notch!

    Thanks again for a most welcome positive post!

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