(IOM) Conference

[philamom]

This is a very quick update on the federal investigation that was ordered by the Congress of the NIH on Lyme and other Tick Borne Diseases last year. This decree ordered the NIH to convene a conference to study the "state of the science" in an objective, unbiased manner bringing together as many divergent views as possible.

 

The NIH hired the Institute of Medicine (IOM) to hold this conference. The reason for this message is that this hearing is available live now, and also is providing video links for viewing later by the public. If you view live, you can submit questions from the public. http://www.tvworldwide.com/events/iom/101011/default.cfm?id=12858&type=flv&test=0&live=0

 

What is most notable in this hearing, is the science elucidating chronic lyme (it's a given that it exists), and the devastating impact of these illnesses, as well as the chronic form of Babesiosis which has been found to have a mortality rate of 3-20% especially in immuno-compromised patients. In addition, it was found that several co-infections are immuno-suppressant, and working altogether set the scene for a severe, intractable, not well understood chronic illness. It was clearly found that the combination of Borrelia (Lyme) and Babesia cause an especially difficult disease to eradicate and part of this derives from the finding that these organisms have an "open" structure and can exchange DNA, creating an ever evolving organism. What is beautiful to behold is how much real science is going on to better understand these diseases that is now getting a spotlight - and clearly the need for better and more research. The best news is that very recent evolutions in proteomics give great hope that quick progress can now be made. In addition, finally, the basic science is being done - just recently (published this month by Benjamin Luft, PHD), 13 major strains of Borrelia have now been genetically sequenced --this data has been extremely revealing and now provides the necessary basis to really understand this illness, without the confusion of many "definitions" of Lyme disease that have had little or no biological basis (EM rash, swollen knee, CDC positive test).

 

This conference is about the "state of the science" and the direction and need for federal future research, and will result in a summary with recommendations to that affect that will be provided to the US Congress. Even though it is focused on research, as it is intended to be unbiased and has been funded by the US Govt, it will have significant weight for the current treatment and approach to Lyme disease.

 

For many of you suffering from these diseases, you should take heart -- the science is telling the story, and revealing what patients have been experiencing, and even more importantly, recent evolutions should speed up progress on better diagnostics and better treatment strategies. There is progress.

 

These webcasts will be available on line for a while (don't know how long) - take advantage of them and pass this on to interested parties.

 

An update on the state of legislation in PA will follow later this week.

 

 

 

Chair, LymeAction PA, a state-wide coalition, www.lymeactionpa.com

[mama2alex]

Thanks! Watching now...

[mama2alex]

Pamela Weintraub, auther of Cure Unknown is talking next!

[PacificMama]

thanks for the link. I just watched Pamela Weintraub's presentation... it was great. For anyone who'd like to view it, you can click on the above link -- she begins just after the 43:00 mark.