P.A.N.D.O.R.A. -  Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.Valentines 2

There is more hunger for love and appreciation in this world than for bread.- Mother Teresa

P.A.N.D.O.R.A.'s NewsletterFebruay 2010

Share the Love

Showing concern, love and appreciation feeds the soul, the body and the spirit. Too often our organizations are staffed by dedicated patient advocates who have NEIDs or are caregivers of someone who has NEIDs. Their only dream and goal is to take away the suffering and the lack of quality of life that patients experience 24/7. Their tenacity and their stamina do need to be renewed and nurtured. 


February is the month of love. We love our patient community, and we often have love expressed to us. Let's share the love with other organizations that tirelessly serve the patients on a local and national level.


Please write a message of appreciation on their website, make a donation to them or send flowers to their office.  


One Voice, as One Community, with One Cause

Researchers Need Love, Too 

More love to share? Spread a little more love to our researchers who have made great personal sacrifices to help us find a cure of NeuroEndocrineImmune disorders that are complex and receive little respect.

As they devote many hours to our service, we know they need more support to reach their goals. Share a little love this season with a donation to these research institutes or send them a message of appreciation. 
Organizations Unite to Send Message to CDC
Petition SignatureA new CDC director of the Chronic Viral Diseases Branch provides an opportunity for a change in the way CDC conducts ME/CFS research. PANDORA and ten other organizations are taking advantage of this opportunity by making a united statement through a letter that was sent on January 3.

Individuals are also asked to join this effort by signing a petition that sends an e-mail to Dr. Elizabeth Unger's bosses telling them to urge her to make the changes that were included in the letter. 

After the petition was started, Unger responded that she received the letter and is discussing the action points with others in the CDC. She also said they were already looking into two of the requests: setting up better communication with the patient community and more collaboration with other researchers.

Already, over 530 have signed the petition. Will you be the next person to sign this and tell the CDC to change? 
Clinical Director Speaks about Opening WPI Clinic
Phoenix Rising has a very interesting interview with Dr. Jamie Deckoff-Jones who is the clinical director at the Whittemore Peterson Institute. She is now working to hire physicians to work at the clinic.

According to the article, she says: "I am looking for family practitioners, internists, pediatricians and emergency physicians who are compassionate, capable of creative thinking and motivated by a need to serve. Also a need to learn. I am currently talking to several doctors, with and without experience treating the conditions in question"

This is exciting news for people with neuro-immune diseases in the western side of the United States. According to a document explaining the purpose of WPI, their goal is to provide a model for centers of excellence. For years, the Chronic Fatigue Syndrome Advisory Committee has recommended the federal government establish such centers.

"These clinical centers will not only provide expertise in the care of patients with neuro-immune diseases, such as myalgic encephalomyelitis, fibromyalgia, autism and Gulf War illness, but will also facilitate the exchange of important information to aid future progress," the WPI document says.

We need multiple centers to serve the many patients. Please support the WPI and the future NEI Center.
MCWPA Ad Results
The Washington Post ad brought results in news media coverage, including a radio interview where a strong message is given and an explanation of the debilitating nature of the illness. You can listen to the interview here. See more news coverage, including an article in the Indy Star, which included comments from Dr. David Bell, can be seen here.


MCWPA has more actions planned, based on a patient survey. The survey results tell us patients want the following five actions the most:

  • Send press release announcing next big biological finding in ME/CFS
  • Public service announcements to be aired on T.V. and airports
  • Support "Doctors Need to Know" information campaign
  • Design a print ad and contribute to some of the cost for organizations to run May 12
  • Send letters to patient organizations of other illnesses associated with retrovirus
Look for more announcements on progress in reaching those goals.
Florida GWI, AIDS and ME/CFS Physician Recognized
Dr. Nancy Klimas, a long-time researcher and clinician for ME/CFS, GWI and AIDS, was recognized as a distinguished alumni at the Miller School of Medicine. Any time a physician receives recognition it helps to put NeuroEndocrineImmune disorders into the public conversation. The University of Miami Health System website announcement says:

Dr. Klimas attributes her sense of community and her desire to "give back" to her medical school faculty and alumni and

UHealth-University of Miami Health System 

colleagues and patients. "When someone opens a door for you," Klimas said, "You have the responsibility to do the same for others. This award will open many more doors."


Such recognition from peers is rare among those who devote their professional career, and more, to finding answers and treating these patients. 

Interview Highlights "Invisible" Documentary
Invisible MovieOur friend, Rik Carlson with the Vermont CFIDS Association, is getting some news coverage for his documentary. Listen to this great interview here. Carlson speaks openly about his experience with ME/CFS and the anger he experienced. Be sure and listen to all three parts.

We want to thank Rik for his remarks about PANDORA and our efforts to increase physician knowledge of this illness. 
Your Reviews may Lead to $5,000 for PANDORA's efforts to Advocate for You

PANDORA needs your help! We have an opportunity to win the $5,000 prize that GuideStar USA, Inc., the leading source of nonprofit information, and KIMBIA, a group that empowers nonprofits and other organizations to increase giving, are making available through their Winter 2011 GuideStar-KIMBIA Nonprofit Giveaway.  


This generous gift would help us accomplish our mission, specifically advocating for an improved quality of life for people with NeuroEndocrineImmune disorders on many fronts. Anyone with firsthand knowledge about us can write a review about us on GuideStar. Your review will appear in our profile on both GuideStar and GreatNonprofits, GuideStar's partner that makes it possible to write and post reviews. There is no charge for writing a review, but you are limited to posting only one review for our organization.  


To write a review, please click on PANDORA's profile page. For more information, see the official rules here. The giveaway begins on February 1, 2011 and ends at 11:59 p.m. EDT, February 28, 2011. If you use social media, please share this with others. Also, see the press release here

Remember, NEIDs Afflict African Americans, too
February is Black History month. PANDORA works hard to advocate for the under-served NEI patient community. Oour goal is to help with research into the impact NEI illnesses have in minority communities.

In this month, we want everyone to know that NEI disorders afflict people of all races. Let's not forget the people of African descent, all over the world, who also have the pain and suffering from NEIDs.  
What if no one Showed Up?
Imagine a meeting concerning NeuroEndocrineImmune disorders was held and no one showed up. We would love to have that happen, if the diseases had been eradicated. Until that happens, it would be tragic for patients to not be represented at these meetings.

PANDORA is making plans to attend some of the following meetings to make sure the patient quality of life is considered when people in power make decisions:

NIH State of the Knowledge Workshop - Maryland - April
Suffer in Silence No More - Kansas - May

Chronic Fatigue Syndrome Advisory Committee (Spring) - Washington D.C. - not scheduled yet
IACFS/ME Conference - Ontario, Canada - September  
New Jersey CFS Association Conference - New Jersey - October
Chronic Fatigue Syndrome Advisory Committee (Fall) - Washington D.C. - not scheduled yet

PANDORA attends these meetings to form collaborations and make sure those in power know the plight of people with NEIDs. It would be unacceptable if no one showed up.  
Committee in NH Considering Changing Pain Law
The U.S. Pain Foundation is urging pain sufferers tell New Hampshire committee to stop insurance companies from arbitrary limitations on what pain drugs they will cover. A summary of the law and contact information for committee members can be found here
Educate Doctors about Pain
The Power of Pain Foundation is urging people to urge New York senators to require pain education for physicians in that state. An e-mail notification says, "Many health care professionals are unaware of the resources available to their patients to relieve chronic and acute pain." Information about the bill can be found here.

The bill number is S2723-2011.

People are encouraged to call or send e-mail to the following senators:

Senator Jeff Klein - 518-455-3595 - jkclein@senate.state.ny.us 

Senator Kemp Hannon - 518-455-2200 - hannon@sentate.state.ny.us 

Senator Tom Duane - 518-455-2451 - duane@nysenate.gov  

Nominate PANDORA

With such great success in the Chase Community Giving project, we feel that we can work together and do more. So....

Let's Do it Again!

American Express is offering $200,000 to five different charities every three months. People vote for their favorite charities once a week. The next three-month round of voting starts on Jan. 1, 2012, but they are accepting nominations for that period now. To be eligible, a non-profit organization must be nominated by many people, meet the American Express requirements and be approved by the TakePart Advisory Board.

  • being operationally stable
  • Having a presence across the United States
  • Having a clear and meaningful mission
  • Having a broad support base
  • Serving diverse audiences


To read complete information on the American Express Project, go here
We can't pass up a chance at $200,000.  

Go here to fill out the nomination form.


Be sure and enter the full name: Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research and Advocacy, Inc. For step-by-step instructions and a specific suggestion for the comments window, go here.


After nominating PANDORA, we encourage you to do the same for other patient organizations.


NEI Center-Conceptual Rendering
In This Issue
Share the Love
Researchers too
Bold Message to CDC
Comments Wanted on GWI
Klimas Recognized
Interview about Invisible Documentary
Positive Reviews Wanted
African Americans and NEIDs
We Show up for You
Pain Law Change Possible
Educate Doctors about Pain
Nominate PANDORA
Our Mission
NEI Center

NEI Center LARGE Logo 3 2010The 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.

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 November 10, the Facebook petition had 1,833 signatures.  

Sign the Facebook  

petition here... 

Agent for Change
Marly's Blog
Current Topic:
Time to Make a
Difference Together

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

Birthday Wishes

Thank you to everyone who has put the NEI Center, MCWPA or other PANDORA projects in their Facebook birthday wish. This is a great way to raise funds for your favorite charity or cause.Birthday Cake


Recent individuals who have done this include Kati Debalic, Lori Chapman-Kroger, Cort Johnson and Kathryn Stephens.


Kathryn committed to matching donations made to MCWPA with an equal donation to WPI. What a great idea!

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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!

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.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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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™