P.A.N.D.O.R.A. -  Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.

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SEPTEMBER is NATIONAL PAIN AWARENESS MONTH
Newsletter
September 2011

Coalition4ME/CFS Proposal to Reclassify Chronic Fatigue Syndrome (CFS) in the ICD-9-CM and ICD10-CM Accepted for Review by the National Center for Health Statistics  

 

Coral Gables, FL, September (Date), 2011 - The Coalition 4 ME/CFS on July 15, 2011 submitted a proposal to the National Center for Health Statistics (NCHS) for reclassification of chronic fatigue syndrome (CFS) as a neurological disease in the ICD-10-CM and ICD-9-CM. It was accepted for review at the upcoming meeting on Sept. 14, 2011 at the Center for Medicare Services (CMS), in Baltimore, Maryland. 

 

 

Mike Munoz
Mike Munoz, Coalition4ME/CFS.org 

"The goal of this proposal is to ensure alignment with ICD-10 and the clinical modifications embraced by other countries, and to ensure alignment with the best current case definition for CFS, which includes both viral and bacterial triggers are in place" stated Mike Munoz, a member of the steering committee of the Coalition4MECFS.

 

To read the entire press release and proposal, please visit the coalition website at Coalition4ME/CFS.org  

 

PANDORA Founder Shows Support at meeting to reclassify CFS  


Marla Silverman NEW PHOTO 3 2010 CROPPED
Marly Silverman
PANDORA founder Marly Silverman was in Baltimore to show support for the Coalition 4 ME/CFS proposal to have chronic fatigue syndrome (CFS) reclassified as a neurological disease. The ICD-9-CM Coordination and Maintenance Committee listened to the presentation in support of the proposal in the late morning or early afternoon of Wednesday, September 14, EST. For a play-by-play of the meeting, visit the
Coalition4ME/CFS Facebook page.

PANDORA wins Citgo 2011 Fueling for Good $5,000 gas card 

YouTube video on Citgo win

Thanks to our supporters who voted for us daily in the Citgo "Fueling for Good" program, PANDORA was one of four charities who won a $5,000 gas card.

See PANDORA's Thank You note at the bottom of this  2011 Winning PSA produced by Lynn Bousquet creating awareness for ME/CFS.   

Thank you!

Click here to watch video

PANDORA Founder & Dr. Nancy Klimas featured in Miami Living Magazine 


Miami Living magazine Marly Silverman, PANDORA founder and Dr. Nancy Klimas were featured Miami Living Magazine Fall issue! "The Doctor Is In" written by Marla Schwartz highlights the advocacy work of both Dr. Klimas and Marly Silverman. Congratulations!

 

Click here to view the PDF. 

 

Visit the magazine's website to find out where you may get your printed issue.  

PANDORA to attend IAFCFSME Conference in Ottawa, Canada 


Kenneth J. Friedman  
Kenneth J. Friedman, PhD 
As we have been asked about the recent International ME Consensus Criteria publication PANDORA would like to share that we are in the process of reading and evaluating this breakthrough publication in the ME/CFS and in the NeuroEndocrineImmune diseases (NEIDs) scientific community.

PANDORA board member, Dr. Kenneth J. Friedman will chair the session devoted to case definitions of International ME Consensus Criteria at the IAFCFS/ME Conference in Ottawa, Canada from September 22-25, "Translating Evidence Into Practice."  

Follow conference updates on Facebook

 

Meet Claire Randall:  International Advocate Extraordinaire


Claire Randall "In my late 20's, when I was living on the Gold Coast (Australia), ME hit - in those days (late 1980's) it was still referred to as "Yuppie Flu" and had only just started being referred to as CFS.  The chlorine in the water on the Gold Coast proved to be my trigger at that time.  I would take a shower before going out and end up vomiting or simply pass out; and I would have to go back to bed and sleep .. and sleep.  And so the Dr visits started ... and the blood tests ... I got tested at least 4 times for Glandular Fever ("mono") and 4 times for Pregnancy (always negative - same Dr - go figure!  Obv.didn't trust his own tests?)  Finally I was referred me to a specialist who chatted with me for about 30 minutes (I recall he had to wake me at one point); and immediately diagnosed CFS - I was advised "nothing can be done". 

Read more from Claire and how "extraordinary" she truly is!

NEI Center-Conceptual Rendering
P.A.N.D.O.R.A.'s Mission

To be one strong voice for manyŠ . . .
  • Creating and Raising Community Awareness 
  • Advocating for Quality of Life Issues
  • Providing Support and Educational Resources
  • Establishing Partnerships in our worldwide community
  • Supporting Scientific Research
  • Encouraging Empowerment groups
  • Organizing Educational Medical & Patient Conferences

These goals will assist patients with neuroendocrineimmune disorders and their families in leading productive and fulfilling lives.

Built on Hope * Strong on Advocacy
Finding a Cure through Research


1 Voice - 1 Community - 1 Cause™

In This Issue
Coalition4ME/CFS Proposal
PANDORA Founder Shows Support
PANDORA wins $5K Citgo Gas Card
Miami Living Magazine Features PANDORA
PANDORA to attend IAFCFS/ME Conference
Meet Claire Randall
Our Mission
P-A-N-D-O-R-A.ORG

We have a new website!   

Pandora new website   

 http://p-a-n-d-o-r-a.org/ 


NEI Center

NEI Center LARGE Logo 3 2010 

The NeuroEndocrineImmune (NEI) Center™ will be 

the first research center to incorporate patient social services assistance, physician education, biomedical and clinical research, and patient computer aided disease diagnosis and treatment (CADDT) specifically designed for multi-system illnesses and complex diseases.    

   

To read the entire mission statement and for more information, go to

 P.A.N.D.O.R.A.'s Facebook Cause Page for the NeuroEndocrineImmune (NEI) Center

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Agent for Change
Marly's Blog
Agent for Change

Marly Silverman, Founder, P.A.N.D.O.R.A.

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