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

Banner August 2011

August 5, 2011

Vote for PANDORA on Citgo 2011 Fueling for Good Program

Fueling for Good vote button
Vote today and daily until
August 11, 2011

PANDORA could be one of

four charities who will win $5,000 gas cards. Vote today and daily until August 11, 2011. Let's show that our community has a strong empowering voice of and can create awareness for the plight of individuals stricken with CFS/ME, fibromyalgia, chronic Lyme disease, MCS/Environmental & Gulf War illnesses.

We appreciate your support!

PANDORA Founder featured in Miami Dade College Successful Alumni Ad Campaign  

MDC adMarly Silverman, PANDORA founder and Miami Dade College alumni, was featured in an ad in the Miami Herald and El Nuevo Herald on Thursday, August 4 as part of the school's "Successful Alumni" ad campaign. The ad will also appear in the Wednesday, August 10 edition of Diario Las Americas.    


"When I graduated from Miami Dade College it was such a milestone for me," said Silverman. "It has led me to great personal and professional opportunities. I am grateful, proud and honored to be able to highlight two organizations that mean so much to me: Miami Dade College and PANDORA." 

August 17, 2011 deadline for Nominations for Appointment to the Chronic Fatigue Syndrome Advisory Committee

The Office of the Assistant Secretary for Health, Office on Women's Health, HHS, is seeking nominations of qualified candidates to be considered for appointment as a member of the Chronic Fatigue Syndrome Advisory Committee (CFSAC).  CFSAC provides advice and recommendations to the Secretary of Health and Human Services, through the Assistant Secretary for Health, on a broad range of issues and topics related to chronic fatigue syndrome (CFS).  The appointments of three Committee members are scheduled to end during the 2012 calendar year.  Nominations of qualified candidates are being sought to fill these future vacancies. Nominations to be considered for appointment to the Committee must be received no later August 17, 2011, by 5 p.m. EDT. 


All nominations should be mailed or delivered to:



Nancy C. Lee, M.D., Executive Secretary
Chronic Fatigue Syndrome Advisory Committee

c/o Office on Women's Health,
Department of Health and Human Services  

200 Independence Avenue, SW., Room 712E

Washington, DC 20201.

No nominations will be accepted by e-mail. 
More information here 

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."   

May 12 - Lobby Day and International Awareness Day for NEI Diseases 


Lobby Day 2011

Meeting with office of Senator Barbara Mikulski - From left: Tanya Gamble, Marly Silverman, Chris Niestpski, Deborah Moldover, Health Legislative Aid, Michelle Lonchar, Advocacy Coordinator, PANDORA and James Mills. 


Washington: Thirty five (35)  advocates from 14 states gathered on May 12 for PANDORA Awareness and Lobby Day group in Washington D.C. The Advocates Extraordinaire attended, testified and supported others at the CFS Advisory Committee meeting on May 10th and 11th and visited their representatives in Congress on May 11th and May 12th. They also participated in the May 11th Speak Up About ME gathering that focused on pediatric cases of ME/CFS.  


Marly Silverman provided testimony on behalf of PANDORA on May 10, 2011 at 11:45 am, and wore black to honor individuals who have died of the consequences of having ME/CFS and other NEI diseases.   


Special thanks to Michelle Lonchar, PANDORA Advocacy Coordinator who worked hard getting us ready for Awareness Week and Lobby Day Activities at our nation's capital.   

Youth Speak Up About ME - "It was definitely worth it!" 

Speak Up About ME 2011 Lobby Day
We all know that people with ME/CFS suffer greatly when they participate in events such as these, but as one parent said:

"... Jamie was badly crashed afterward (...we all paid a price for being there) and missed 3 more days of school.  Monday night, still with terrible pain in his legs, I asked him if he regretted going to DC, knowing the price now.  
He said, "NO!  It was definitely worth it.""

To Jamie and the other Speak Up About ME participants, it was worth it:
  • To raise awareness of the severity of ME/CFS and the limitations ME/CFS imposes on lives;  
  • To spend time with others who understand what they deal every day;  
  • To take action;  
  • To become empowered.

THANK YOU to everyone who helps us (including and not limited to
  • P.A.N.D.O.R.A.
  • Phoenix Rising
  • The Rocky Mountain CFS/ME & FM Association
  • The Vermont CFIDS Association
  • The ME/CFS Worldwide Patient Alliance
  • CFS Solutions of West MI
  • CFOG (Chronic Fatigue Syndrome and Fibromyalgia Organization of Georgia)
  • National ME/FM Action Network
  • Wisconsin ME/CFS Association
  • Coalition 4 ME/CFS
The numerous individuals who generously give of their time, expertise, support, ideas, and who help Speak Up About ME be the success that it is "Speak Up About ME!" In doing so, you help young people with ME/CFS become Invisible No More!
P.A.N.D.O.R.A., Coalition 4 ME/CFS, Coalition 4 Fibromyalgia, Applaud IOM Pain Report
IOM report
WASHINGTON, DC - June 29, 2011 - "As organizations representing millions of Americans who suffer from chronic pain, of health professionals who care for these Americans, and of researchers and educators working to improve the care and treatment options available to these Americans, we are united in our enthusiasm for the Institute of Medicine's (IOM) attention to this issue and by the release of this landmark report that identifies pain as a major public health problem."

PANDORA was among the national organizations listed in the press release which signed off on the IOM report on the day that it was released.

Read more

Organizations Announce formation of the Coalition 4 Fibromyalgia 
Coalition 4 FM logo
Coral Gables, FL--- June 13, 2011---NeuroEndocrineImmune Disease (NEIDs) organizations have formed the second phase of the Coalition network to serve their patient community and change public policy. The Coalition 4 Fibromyalgia mission is to present a unified voice with common goals and objectives that will improve the quality of life for fibromyalgia (FM) patients and their families. This professional collaboration will strengthen its member organizations, promote resource-sharing, encourage networking and provide leadership training.
Read more
New Advocacy Group in Belgium
Wake Up Call Belgium
Frank Op DeBeek reported that they have now formed a new organization in Belgium to raise awareness for ME/CFS.
Wake-up Call Movement: ME / CFS & Fibromyalgia Action Group (Welkom Wake Up Call Beweging from Belgium). The founders are committed to the political management and revitalization of CFS/FM disorders using wake-up calls.

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
Vote for PANDORA on Citgo Fueling for Good Program
Miami Dade College Honors PANDORA Founder
CFSAC Nominations Deadline
PANDORA to attend IAFCFS/ME Conference
Lobby Day
Youth Speak Up About ME
New Advocacy Group in Belgium
Our Mission
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


NEI Causes petitionPetition to U.S. Secretary of Health

By popular demand, we have set up a "sister" petition on Change.org asking US Secretary of Health & Human Services, Kathleen Sebelius,

to meet with PANDORA concerning funding for the NEI Center(TM). We were surprised to find people signing the petition within minutes of our posting it.

If you have not signed the petition we have on Facebook and are not on Facebook, then please sign this other petition here.  


There are now 320 signatures listed in our sister petition on Change.org.   


NOTE: if you have already signed the petition on Facebook, please do not sign this sister petition. This sister petition is for those who do not use Facebook.  As of May 7,2011 there are 2,186 signatures on Facebook.   

Sign the Facebook  

petition here.  

Agent for Change
Marly's Blog
Agent for Change

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

Marly Silverman's
Birthday Wish

For my birthday on August 16th, I'm asking my friends and family for a special gift: help me raise $250 for Fibromyalgia Sufferers Unite. It's a great cause that Supports PANDORA and its community and advocacy programs.      

Birthday Cake


Please click here to check out my Birthday Wish
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Ryan is Home

Ryan Michael Baldwin with Dog

The Baldwin family still needs your help.
Click on the image to join the "Bringing Ryan Home" Facebook Cause Page

Don't Dump It!
te It!

Click here for more info

.O.R.A. is going "Green"!

Donate your old cell phones, ink toners and ink cartridges and proceeds will benefit P.A.N.D.O.R.A.

In Memoriam

in Memoriam

In memorium
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