chronic fatigue syndrome, fibromyalgia, fms, cfs, myalgic encephalomyelitis, me, lyme disease, chronic lyme disease, cld, environmental illnesses, multiple chemical sensitivies, mcs, gulf war syndrome, gws, gulf war illnesses, empowerment groups, support groups,cfids
chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids
chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids
A Non-Profit Organization
501c3

chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids




To make a financial donation to P.A.N.D.O.R.A., click the button below.

 

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WELCOME TO THE WEB SITE OF P.A.N.D.O.R.A.!

ONE VOICE, ONE COMMUNITY, ONE

CAUSE™

It is estimated that 20 MILLION AMERICANS are stricken by Neuroendocrineimmune Disorders. Worldwide the estimates can be staggering. Recently a demographics expert suggested that between 23-28 million individuals are now suffering with Chronic Fatigue Syndrome or ME worldwide. Despite of these high numbers, our single voices have no impact. We are yet to estimate the total financial, social and demographics impact of all the illnesses that we embrace in our mission. But we are working on it.

OUR MISSION IS...

TO BE A STRONG VOICE FOR MANY©

  • We are One Strong Voice for Many©in our neuroendocrineimmune community. We are lending our voice to create awareness of the plight of individuals suffering with neuroendocrineimmune disorders.
  • Our mission is to address and alleviate many of the issues that affect the quality of life of persons who are diagnosed with chronic fatigue syndrome (CFS), (also known as chronic fatigue immune deficiency syndrome (CFIDS) in the U.S., and abroad also known as M.E. or ME; fibromyalgia syndrome (FMS), Gulf War illnesses (GWI), multiple chemical sensitivities (MCS) or environmental illnesses (EI) and persistent Lyme disease (PLD)
  • As part of our outreach program in the community we also embrace individuals who have been diagnosed with multiple sclerosis (MS) and other related illnesses as these illnesses considerably overlap with CFS and with FM.

Our vision is to interrupt this cycle of suffering experienced by so many! You can help us. Donate to P.A.N.D.O.R.A. today. Click in the Google Donate Button below. Your generous donation will support the process required to establish Neuroendocrineimmune Disorders Research Centers in the U.S. and abroad. These special research centers dedicated to our community of suffering, will lead to scientific breakthroughs, physician training, scholarships for the chronically ill, and most importantly improve the quality of life for individuals with Neuroendocrineimmune Disorders (NEIDs).

WHY YOU SHOULD CARE

Neuroendocrineimmune Disorders (NEIDs) affect men and women of all ages. Government officials estimate that there are 20 million Americans (CDC,NIH,NIAMS,NIAID, NIEHS) stricken with NEIDs. These illnesses can be particularly harsh in children, teenagers and young adults as our school systems are not prepared nor have the training and knowledge to be able to provide what is required by federal & state law in providing special accommodations. Often parents are mired in allegations of medical neglect, dependency, unable to provide for their children and in the most draconian outcomes - being charged with Factitious Disorder by Proxy (FDP) formerly known as Munchausen Syndrome by Proxy. Even the elderly is not immune to NEIDs.  The social services available to the elderly often overlook the physical challenges of having NEIDs. Adult men and women suffering with NEIDs are being discriminated in the work force, encountering legal disability process that reputedly questions the existence of these illnesses. They daily encounter a bias in the disability system across this country, that is hurtful, counter productive, and one that even the most educated physicians on the subject of these illnesses have not been able to break.

Yet, we persist. The uncertainty that these illnesses bring to people's lives are shocking, brutal, disabling and devastating. As these illnesses wax and wane, life altering adjustments have to be made often. The isolation of being confined to a bed or to a home because one is too ill and physically weakened, damages the emotional and will break the spirit. These individuals are quite fragile and yet, the lack of compassion displayed is a hindrance to these individuals potential recovery and well-being.

These illnesses rob the individual from the ability to cook, clean and bathe, and if he or she has a family, it robs them the ability to provide for their families too. There are no community social services being provided to these individuals with these special needs anywhere in these United States. Being bed or home bound takes a toll in a personal or family life.

For many Americans in communities across the country, we will find individuals unable to speak; unable to ambulate, and due to the cognitive impairment that accompanies these illnesses, these individuals are also unable to evaluate their personal situation. Combined, these challenges are a huge hindrance to quality of life, as the inability to express the reality surrounding them, also prevents these individuals from seeking public assistance or asking for family assistance. These individuals become INVISIBLE.

FINDING A TREATING PHYSICIAN

IS DIFFICULT, FOR SOME IMPOSSIBLE

Most often, these individuals do not have the financial means to see a physician, nor to pay for the specialized medical services that two dozen or so specialists found in the entire United States provide. Most of the specialists for Neuroendocrineimmune Disorders are Cash Only medical practices, meaning no medical insurance is accepted, including Medicare, which is a safety net by many who were lucky to obtain Social Security Disability benefits. Medicaid services due to its serious limitations on payment reimbursement will not provide access to these specialists either. Sadly a large majority of NEIDs patients are or will need at a certain time in their lives, these medical government programs or social services safety nets that are not geared to fully assist them.

Usually, primary care physicians are not familiar with NEIDs and often are intimidated by the task of treatment availability. In the sheer luck of finding a primary or family physician who wants to help his/her patients, they have difficulties referring their patients as there are not enough specialists in the U.S. much less in the world, to care for these patients. a A visit to an emergency room is met with scorn and cruel statements by the ER physician that "CFS, FM, Persistent Lyme Disease, MCS or even GWS do not exist". The medical ignorance displayed is not only cruel, but a sign that our medical schools are failing the public and are failing the NEIDs community. The community of suffering that P.A.N.D.O.R.A. represents, deserves better! P.A.N.D.O.R.A. in partnership with our strategical partners are indeed making a difference. But we still need YOUR HELP!

Pictured above: Dr. Gordon Broderick Dr. in charge of the CFS, Gulf War syndrome & Fibromyalgia research center at the Department of Medicine, University of Alberta, Canada who is the recipient of a $3,000 special grant from P.A.N.D.O.R.A. in memory of Dr. Steven Croft . Our grant to  Dr. Broderick is to be used for two of his intern medical students assistants. They are in the picture, next to Dr. Broderick: Landon Berger (middle) and Andrea Kreitz (right). The grant from P.A.N.D.O.R.A. for Andrea Kreitz will complement her internship focus on the study of immune imbalance in Gulf War Illness, which is funded by the U.S. Department of Defense.  Also with our grant, Landon Berger (middle of photo) will receive a travel stipend to work with a collaborator at Cornell University in the use of neuro-imaging for diagnosis of chronically fatigue syndrome patients, which is also funded by the CFIDS Association of America, Inc.

Pictured above are Dr. Kenneth Friedman, our Director Public Policy & a member of our executive board, holding two checks one for a $5,000 grant to the University of Miami - CFS-GWS Clinical Research Center (Dr. Nancy Klimas) and another for the Vermont CFIDS Organization for a medical student scholarship fund during our Golf Classic - Golf Fore A Cause, Swing Fore a Cure, on May 23, 2008.

Pictured above is Dr. Kenneth Friedman holding a $2,000 grant check donated to the IACFS-ME Association for a medical-research scholarship honoring Dr. Nancy Klimas, a member of our medical advisory board.

QUALITY OF LIFE

Quality of life issues have been a major focus in everything we do on behalf of PwNEIDs.  Through partnership with other local, state and national organizations that share similar goals and mission we are indeed making a difference. Our awareness poster displays most of our educational community outreach programs that contribute and ensures quality in scientific research, quality of medical treatments, and quality of life for our community of suffering.

Please support P.A.N.D.O.R.A. nationwide efforts by making a donation of any size. As a 501 c 3, charitable organization, every generous donation we receive is tax-deductible under the IRS laws.

MEMBERSHIP IS FREE

We invite you to sign up for our free membership and free newsletter by clicking in the above right corner of this page. We are one of the very few non-profit organizations that don't charge for membership. We want to remain in this way. If you are a NEIDs' patient or care for one, all we ask is that you lend us your voice so we can be effective. Together we are strong. Together we can make a difference!

COURAGE DESPITE THE ODDS

PwNEIDs (Persons with Neuroendocrineimmune Disorders) are indeed courageous. Despite of the fact that they have to face personal, professional, and life altering challenges, that even for the ordinary person can be trying and difficult, they nonetheless find the will to survive in their attempts to lead a productive life.

But it is a long arduous, confusing and lonely path. P.A.N.D.O.R.A. hopes to alleviate some of the stress by providing you with local, state and nationwide resources, and enhancements that will give you a solid knowledge to go beyond being merely a survivor, and becoming an accomplished thriver.

BRUTAL REALITY TO MILLIONS OF

AMERICANS

Neuroendocrineimmune Disorders are a brutal reality to now millions of Americans and millions worldwide. But we can change that with your generous donation. Help us to continue our mission by creating change within communities across the country and worldwide. Help us to save an individual, and his or her family from NEIDs' devastating effects. Make a donation today. Click on the Google Donate Button below and make a difference!

P.A.N.D.O.R.A. is here to help. P.A.N.D.O.R.A. was built on Hope. We are strong on Advocacy and we support scientific Research, so ultimately a Cure can be found for CFS/ME, FM, GWI, MCS/EI, PLD, and other related and debilitating neuroendocrineimmune disorders.

SOCIAL & POLITICAL BASE

We are taking advantage of the social networks that now exist in the internet to create a political base for the Neuroendocrineimmune Disorders worldwide community. In particular in the United States, we see the crucial need to get the advantages that a social network provides to spread our message and learn from our membership and strategical partners. We now have a strong presence in the ME-CFScomunity.com network and our founder Marly Silverman and Dr. Kenneth Friedman, our Vice President, Public  Policy, collaborate with Daniel Moricoli as they are members of the advisory board for CFSKnowledgecenter.com

Join us on ME-CFScommunity.com

"Community, Guidance and Practical Information for those affected by Chronic Fatigue" is the goal of CFSknowledgecenter.com. As one of our strategical partners. The web-site is quite organic as it includes: a social network cfs-mecommunity.com that allows individuals to post articles, blogs, questions, find information pertinent to CFS/ME. P.A.N.D.O.R.A.'s is actively participating in this web site with the creation of our own social network using a customized set of tools that the site offers not only to PANDORA but also to other organizations within our community.

On P.A.N.D.O.R.A.'s social network at cfs-mecommunity.com, our members and the general public can communicate, share ideas, exchange information, mobilize national and worldwide advocacy, and more importantly, create a supportive environment for long lasting friendships. This interaction will capitalize and benefit our national & international membership. Our goal is to create a unified socioeconomic and political base which will pro-actively become a powerful force for change.

ACKNOWLEDGEMENTS

OUR YEAR AROUND GREEN PROJECT

Our ongoing "Green Project" - Don't Dump it! Donate it to P.A.N.D.O.R.A! and Save the Environment. Since the beginning of 2008, when this green environmental project was implemented, it has generated over $1,200 and we are using these proceeds to offset our ongoing communications internet expenses.

We want to acknowledge the many corporations and local businesses who are helping us with this project.  We are grateful to Coastal Construction.  They have set up several collection boxes through their offices for cell phones, ink toners and ink cartridges. The proceeds of the sales of these recycled items to Dade Recycling Inc. are being donated to P.A.N.D.O.R.A.

If you know of a corporation or business that could be part of this environmental friendly project, please contact P.A.N.D.O.R.A. and we will make sure they join the corporations above and many more who have signed up for the "Green Project".

 

P.A.N.D.O.R.A. is a

recipient of a Google Grant

Award.

The Google Grants program supports organizations sharing Google's philosophy of community service to help the world in areas such as science and technology, education, global public health, the environment, youth advocacy, and the arts.

Designed for 501(c)(3) non-profit organizations, Google Grants is a unique in-kind advertising program harnessing the power of Google AdWords advertising product. Google Grants has awarded AdWords advertising to hundreds of non-profit groups whose missions range from animal welfare to literacy, from supporting homeless children to promoting HIV education.

EVERY YEAR - MAY 12 is

International Awareness

Day for

Neuroendocrineimmune

Disorders

Click here to view our Awareness Month Events and our 2009 Awareness Day Poster

PAGES YOU WANT TO VISIT

Advocacy

Advocates Extraordinaire Program/NEI Research Centers Project

Empowerment Groups and sub-menus

What's New

Empowerment & Support Group Meetings

Wellness Directory

Research

Advocates Extraordinaire Program/NEI Research Centers Project

 

FINANCIAL  ASSISTANCE

Financial assistance is now available with medical co-pays from the Patient Advocate Foundation, Co-Pay Relief Program. If you have difficulty paying your medical co-payments and you suffer from chronic pain, you may be able to qualify for this financial assistance program. To file an application please click here. Every month they accept new applications.

 

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chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids

Become a Member of P.A.N.D.O.R.A. Today and Join Our Mailing List
Enter your email to receive our newsletter containing information about upcoming events, empowerment meetings, and updates on research and advocacy.


A TWIBBON FOR P.A.N.D.O.R.A.!

We have created a twibbon for P.A.N.D.O.R.A. utilizing the Advocates Extraordinaire Ribbon designed and donated to P.A.N.D.O.R.A. by Sebastian Chico. Support this very creative effort to raise awareness for

P.A.N.D.O.R.A.'S cause on Facebook and on Twitter.

Here is the link for Facebook.

Here is the link for Twitter

Click here for the NEI

CENTER

press release.

THE PREVALENCE OF

XENOTROPIC MURINE

LEUKEMIA VIRUS-RELATED

VIRUS IN HEALTHY BLOOD

DONORS IN JAPAN

Click here for the PDF file.

 

CFSAC VIDEOS ARE BACK

GOOD NEWS! - Look at what collaboration and cooperation can accomplish in our community! A patient driven initiative collaborative efforts by CFSUntied, Diagnose Support, P.A.N.D.O.R.A. & Stand up 2ME are collecting the videos of the public and patient testimonies provide during the CFSAC two-day meeting on Oct 29 & 30, 2009.

This is a wonderful educational effort that we hope to translate to other languages as well. If you speak Spanish, French, Portuguese, Dutch, Italian, Creole,Hebrew, Japanese, Chinese and Arabic or any other language that you think it could help us to spread the word about chronic fatigue syndrome(CFS)-myalgic encephalomyelitis (ME), please contact P.A.N.D.O.R.A. or any of the patient groups or organizations involved.
http://www.youtube.com/user/CFSACvideos# p/c/D8BA914DCB0E7E9
9

CDC Announcement

The CDC announced on

January 27, 2010, that "Dr. William Reeves has accepted an assignment as Senior Advisor for Mental Health Surveillance in the Public Health Surveillance Program Office (proposed) within the Office of Surveillance, Epidemiology, and Laboratory Services (proposed). The effective start date is currently scheduled for February 14th. Dr. Reeves will no longer be assigned to the CFS leadership program.

We wish Dr. Reeves great success in his new business endeavor. Dr. Elizabeth Unger meanwhile will be the Acting Chief, Chronic Viral Diseases Branch (CVDB), also effective February 14th. We look forward to working with Dr. Unger on issues that affect our overall community.

Dr. Judy Mikovits Video on

XMRV virus Presentation

 

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Dr. Judy Mikovits XMRV Presentation from ProHealth on Vimeo.

Dr. Judy Mikovits Q& A

Session

Dr. Judy Mikovits XMRV Q & A from ProHealth on Vimeo.

Dr. David Bell XMRV Virus

presentation on

January 15, 2010

XMRV Lecture By Dr. Bell-1st Half in Higher Definition- from Barborka on Vimeo.

XMRV Lecture by Dr. Bell-2nd Half in Higher Definition- from Barborka on Vimeo.

Q & A After XMRV Lecture By Dr. David Bell from Barborka on Vimeo.

HemisphRX, the makers of

Ampligen provides grant to

the IACFS-ME Association,

to assist in the Development

of Chronic Fatigue

Syndrome (CFS) Clinical Guidelines.

The Ft. Lauderdale/Pompano

Beach Neuroendocrineimmune

Disorders Empowerment

Group has a NEW meeting

place!  Click here

Ryan Michael Baldwin is

now reunited with his

family!  His family

has full custody of their

child.

An alliance of 23 patient advocacy non-profit organizations signed off on a letter to Governor Bev Perdue asking her to investigate why the Department of Social Services (DSS) in Buncombe County, NC has taken the draconian steps of removing Ryan from parental care.  

P.A.N.D.O.R.A. wrote letters to Buncombe County Commissioners, NC State Legislators and NC Federal legislators on his behalf and of his family.

Click here to read the letter written to the Governor Bev Purdue.

We are grateful to Pat Fero, from the Wisconsin CFS-ME Association for calling our attention to the plight of this courageous family.

Click here for the January 6,

2010 article, written by

Nelda Holder, published by

the Mountain Xpress online  

paper in the Ashville-Black

Mountain area.

As the family begins the

process of healing from the

ordeal that was imposed by

the local Buncombe County

DSS, and as shared by his

parents with P.A.N.D.O.R.A.

- "It is is wonderful to have

Ryan home with us". We will

share their story with you

through their own voices.

Due to the legal issues

of this case, we refrained

from making any comments,

which could have been  

misinterpreted or caused

additional pain and

retaliation towards Ryan's

family.

Join Ryan's Cause on

Facebook.

CFS Advisory Committee

Meeting was held on

October 29-30, 2009.

CFS Advocates attended this meeting in person or via the web site video-cast. On the first day October 29, 2009 - 400 Hits in the AM presentation via the the web cast. Hundred more have sent their story to the CFSAC committee. We want to thank those who sent their testimony via e-mail and cc Marly Silverman too.

Click here for the agenda's meeting

Click here for Marly Silverman's CFSAC testimony on October 29, 2009.

Click here for Dr. Kenneth Friedman's CFSAC October 30, 2009 written testimony.

We are sorry that

Luminescent closed his

account but we remain

grateful for the great work

he did.

 

Join P.A.N.D.O.R.A.'s cause

The NEI Center™ on

Join Marly Silverman's Blog

Agent for Change

Join us on Youtube.com

We are number 35 on the top

100 non-profit list on

youtube.com.

All because of you!

Follow Marly Silverman on

Follow P.A.N.D.O.R.A. Twibe on

CFS-MECommunity.com

featured video Dan Moricoli



CDC INPUT FROM PANDORA

Please click here for the expanded and written input that was made orally on April 27, 2009 at the CDC CFS Stakeholders' meeting.  This same input was provided to the CFSAC meeting as well.

CFSAC meeting on May 27-

28, 2009 was one of the

best PANDORA has ever

attended.

Click here to read the written testimony provided by PANDORA. Marly Silverman, founder of PANDORA was given the opportunity during the time assigned for public testimonies to speak. She used Facebook and report on some of the action during the first day. She also posted on ME-CFScommunity.com

Click here to view the archived video broadcasts for both days. We were told that from now on all future meeting of the CFSAC will be broadcasted in order to comply with the ADA government mandates. A victory indeed for everyone involved in getting this off the ground - Rebecca Artman, MAME (Mothers Against Myalgic Encephalomyelitis), Dr. Kenneth Friedman, PANDORA's The Empty Chair Project in partnership with advocates from almost all 50 states including national, state and local sister  organizations including local groups who sent pictures, who wrote letters that we delivered to our congressmen, made phone calls and a special acknowledgement goes to MAME (Mother Against Myalgic Encephalomyelitis) a group of concerned grass roots advocates led by Jean Harris. Her team filed with the Office of Civil Rights to ensure accessibility of these meetings to the disabled would be accommodated. Kudo to her dedicated team! Our patient advocacy community through unity has its VOICE back where it needs to be.

ONE VOICE, ONE COMMUNITY, ONE CAUSE!

WALK IN MY SHOES™-

COMING UP AGAIN in 2010

The 2009 event was a great

success despite the rain.

Click here for pictures

Walk In My Shoes™ Complete Information  

 

chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids

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