LymeNet Flash: beward of student's LYME MAP; IDSA associated by woods foundation

This is topic beward of student's LYME MAP; IDSA associated by woods foundation in forum Activism at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/8/2094

Posted by bettyg (Member # 6147) on :

hi all,

i received the below in my email today and wanted others to be aware of it.

it's about a student wanting to make a LYME NATIONWIDE MAP of where folks are and their brief story.

but if you start going thru the various pages, you'll discover what i did as i have stated before.

just a heads-up on this project ... bg
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Hey LYME support buddies: go to this site and put ur case up maybe we will be recognized as the epidemic we know this is:

http://sites.google.com/site/LYMEDISEASEMAPproject/home

It's a map and you can add your story to your town. Really simple.

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hi there; this looks good until you startr reading the site;

*sponsorsed by robert wood foundation; tincup posted alot lately in activism about him & how he's NOT helped us chronic lyme folks;

*links show idsa guidelines only!! not anything about ILADS guidelines. [tsk]

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*so sorry, this is one i won't forward on; idsa manipulates things to their advantage! but thx anyway.

*bettyg, iowa activist

Posted by Cold Feet (Member # 9882) on :

Betty, TinCup;

Did you mean this project is funded by this group: http://www.rwjf.org/

Wait, just found it:

About the Young Epidemiology Scholar Program: This program encourages high school students from across the United States to learn about the science of epidemiology and careers in public health. The program is run by the College Board and sponsored by the Robert Wood Johnson Foundation.

Posted by Abxnomore (Member # 18936) on :

Why don't you delete the post rather than giving the
robert wood foundation any exposure at all?

Posted by bettyg (Member # 6147) on :

so you read the same as me .... good.

Posted by bettyg (Member # 6147) on :

NO abx.
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i want members to know about this and look into WHO is doing and providing funding/sponsorship for this survey BEFORE they send in their info.

many others folks received this survey from 1 of our members in our regular email.

Posted by Pinelady (Member # 18524) on :

Around here we call that a snake in the wood pile.
MORE DETAILS ABOUT PROPOSED CENTER

This effort is spear-headed by CFS advocate, Kenneth Friedman, PhD, UMDNJ, and a Florida-based "neuro-endocrine immune" support group, P.A.N.D.O.R.A., for which he is Director of Public Policy.

The Center will be located at the University of Medicine & Dentistry of New Jersey, home to both Mr. Friedman and Robert Wood Johnson Medical School.

We are concerned that Robert Wood Johnson Medical School (deeply involved in the Lyme vaccine clinical trials & was home to someone acknowledged in the IDSA Guidelines) has published numerous articles strongly discounting the notion that chronic Lyme disease symptoms remain after standard IDSA treatment.

If symptoms remain, they are either considered by them to be psychiatric in nature or a result of autoimmune disorders, such as fibromyalgia and chronic fatigue syndrome.

At the recent IDSA Lyme Guidelines Review Panel hearing, it was reported that, "these syndromes have more in common than their apparent differences would suggest and may be best considered under the rubric of a Functional or more accurately, Dysfunctional, Somatic Syndrome."
http://flash.lymenet.org/ubb/ultimatebb.php/topic/8/2099

[ 10-19-2009, 11:03 AM: Message edited by: Pinelady ]

Posted by bettyg (Member # 6147) on :

pinelady, thx for update for those who may have not read the other link ...