10 years starPANDORA .org logo side

Lots Happening for 20th Anniversary of
NEIDs Awareness Month in May
April 2012

$20 Gets You a Chance for a One-Week's Stay in Resort in Orlando

In PANDORA's 2012 Advocacy Raffle, just $20 gets you a chance to win 7 days at Westgate Lake & Resorts Spa in Orlando, Florida. Money raised through the raffle will go to PANDORA and the

Tina Tidmore and Dr. Kenneth Friedman on the Radio  

On March 26, Tina Tidmore and Dr. Kenneth Friedman told the public about the implications of the Rituximab study and the possibility that ME/CFS is an autoimmune disease. Interestingly, Friedman tells of an invitation-only meeting in June, which he said should lead to a published article discussing what the Rituximab study portends. The hope is that this will lead to government researcher interest. Be sure and listen to the whole interview when you can.  
The radio host is Leslie Carol Botha. The show is "Holy Hormones Honey" and airs on Monday nights in Ft. Collins, Colorado. Leslie's interest in ME/CFS started with the MCWPA ad in The Washington Post in 2010. Since then, she has interviewed Tina three times. She also interviewed Rivka Solomon, an ME/CFS patient who also runs That Takes Ovaries, a women's non-profit organization.  
Leslie's show looks at new and controversial theories concerning vaccines and women's health.  

May 2 Webinar on Finding Affordable Medications  


PANDORA and NeedyMeds have teamed up to present a special webinar thatAssistance Sign will feature a variety of resources available to those suffering from NeuroEndocrineImmune disorders, such as chronic fatigue syndrome, also known as myalgic encephalomyelitis in most other countries, and fibromyalgia.  


When: May 2, 2012

Time: 1 p.m. Eastern time

Presenter: Elizabeth Messenger, Outreach & Education Manager at NeedyMeds.  


Elizabeth will explain how to find the assistance listed on  www.needymeds.org. Highlights include the pharmaceutical patient assistance programs that help people afford their medications, as well as programs offered to people based on diagnosis. Those living with NEI diseases can face substantial financial difficulty in their health care and this presentation will guide them through some options to help ease this burden. 


Marly Silverman, founder of PANDORA will present a short introduction of PANDORA'S 2012 May Awareness for NEI diseases. This webinar is part of the 2012 May Awareness Month activities and efforts of PANDORA and its partners to educate, create awareness and empower patients, caregivers, and the public. The resourceful webinar on May 2nd, will also launch the ME/CFS disease page on NeedyMeds sponsored by PANDORA.


Marly Silverman, PANDORA's founder stated: "We are excited about being able to provide through NeedyMeds a reliable source of information to our members and the overall patient community. NeedyMeds mission is geared to providing resourceful and valuable data to patients with chronic diseases. They provide in one location, at the click of the mouse, easily accessibility to a variety of potential solutions that will ultimately enhance or restore the quality of life for NEI patients."


We hope you will use these resources and provide feedback on this valuable service to PANDORA. The goals of NeedyMeds and PANDORA are to ensure this information can be found at your fingertips and is well organized for patients, families, caregivers and the public.


Register today.   


We look forward to seeing you at the  

webinar on May 2nd from 1-2 p.m. Eastern Time.  

Like us on Facebook 


PANDORA Supports Speak Up About ME and Revives Empty Chair Project 

As the spring Chronic Fatigue Syndrome Advisory Committee meeting looming, Denise Lopez-Majano is working to give voice to those who got the illness when they were young with the spring 2012 Speak Up About ME event.

Empty Chair
Also, for the ME/CFS patient at large, she is working to have patients submit photos to show they would be there if they could. The committee members and government employees take note of the number who attend. So, we want to show them that even if we can't attend because of our physical limitations, we do care about what is happening there. This idea started in 2007 as PANDORA's
Empty Chair project. Denise is organizing it this year. Reminder:
This is for people of all ages.  
Additionally, Denise and Phoenix Rising have a survey about Social Security disability. She plans to show the results to CFSAC members. Please take a few moments and fill out the survey. 
PANDORA is assisting Denise with funds, gas cards and more to help with her advocacy efforts. We urge all to read the latest on her efforts and see how you can participate by reading her blog. 

Dr. Phil Speaks about Chronic Lyme 

Dr. Phil
The "Dr. Phil" show recently aired a segment on whether chronic Lyme disease is real. He had three patients, one of which works for the show discussing their experiences. He also had two doctors giving differing opinions.  
We note that no mention was made of last year's study that shows people with neurological post-Lyme disease syndrome had abnormal spinal fluid proteins from healthy controls, which shows a defect in the brain.  
The "Dr. Phil" segment has been posted on YouTube in three sections: 
After the show, Dr. Phil gave some of his own opinions in
Dr. Phil Uncensored, titled "Deadly Consequences." He mentioned that insurance companies have a vested interest in saying the disease doesn't exist after 30 days. He also has a place on the website 
for people to make comments on the shows. 

ICD-10-CM Implementation Delayed 


The Coalition 4 ME/CFS has not heard back from the National Center for Health Statistics (NCHS) concerning the proposals to reclassify chronic fatigue syndrome into the neurological category in the U.S. clinical diagnostic code manual (ICD-10-CM). A response from the Director of the NCHS was due on December 31, 2011.  


The Department of Health and Human Services has postponed the compliance requirement date for ICD-10 procedure and clinical manuals.  According to the press release, the required changes are putting an administrative burden on providers as the ICD-10 has many more codes compared to the current ICD-9 procedure and clinical manual.  


Meanwhile, Coalition 4 Fibromyalgia members have expressed interest in filing a similar proposal to move fibromyalgia into the neurological category of diagnostic codes and its steering committee is actively participating in a nationwide effort to address the DSM-5 revision.  

CFS Patient Wins Disability Lawsuit
We Want a Google Doodle
Google Doodle
A recent Google doodle.

May 12 is the perfect day for Google to have an image in their search engine bringing awareness to NEI diseases. This patient initiative was started months ago. But May 12 is coming soon. So a push now will help.

See the petition here.
The petition already has 1,152 signatures.

PANDORA's Mission

Through the following efforts, PANDORA seeks to alleviate the suffering caused by NeuroEndocrineImmune diseases:

  • Advocacy for improving patient quality of life
  • Community awareness projects
  • Patient education programs and conferences
  • Physician education programs
  • Research grants
  • Partnerships with other patient organizations
  • Collaborations with academia and the biotech industry

PANDORA advocates for and works toward establishing centers of excellence for research, clinical care, physician education and government services assistance for NEIDs patients and their families.

In This Issue
2012 Advocacy Raffle
Two from PANDORA on the Radio
Webinar from NeedyMeds
PANDORA Supports Speak Up About ME
Dr. Phil Show on Lyme
Coalition4ME/CFS Proposal
CFS Patient Wins against AT&T
We Want a Google Doodle
Our Mission
Celebrating 10 Years
of PANDORA Advocacy 

The year was 2002, and Marly Silverman envisioned an organization that would improve the quality of life of NeuroEndocrineImmune disease patients. After gaining inspiration in a dream, PANDORA was born.


Since then much has changed for the good. Take a look at some of the grants we received and gave in the last few years. 

Please join us in celebrating  

10 years of PANDORA Advocacy. 

Facebook Group for May 12 Awareness Events 
Patients are working together through Facebook to arrange for May 12 Global Action. Remember, 2012 is the 20th year for international awareness for NEIDs illnesses on May 12.

We have a new website!

Pandora new website

Coming Up


We are waiting for the date to be  set for the spring Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. From the last meeting, they have four committee positions to fill. Follow us on Facebook for an upcoming  announcement.   



The DSM-5, which is used as the diagnostic manual for mental illnesses, will have another public input time sometime in the next couple of months. Many  

organizations have sent letters criticizing the new complex chronic somatic disorder and its criteria  as being so broad that many  with chronic illnesses of unknown  etiology will end up being misdiagnosed. 


PANDORA issued two letters during public input and we also joined  the Coalition 4 ME/CFS in joint letter expressing our concerns. We are already collaborating with other national organization, which shared similar concerns. We joined 50 other national and international organization on a petition questioning DSM-5.  


PANDORA is looking to potentially issue a call action on the issue of complex somatic symptom disorder (CSSD) soon if our input is ignored.   

Coming Soon 

Llewellyn KingPANDORA will be making an announcement soon concerning a joint project with donors and Llewellen King. In the mean time, we encourage you to watch the 23 videos this respected journalist and commentator has done on ME/CFS. 

May 12 Seminar
 in West Michigan  

The CFS Solutions of West Michigan is hosting a seminar titled "Facing Chronic Illness: Adjusting to a New Life" on May 12. It will be at:  


St. Mary's Wege Health  

& Learning Center

300 Lafayette, SE

Grand Rapids, MI 49503

Conference Rooms 1-3

Time: 1-3 p.m.  


The conference will focus on Patricia Fennell's four-phase model of chronic illness: crisis, stabilization, resolution and integration.   


Click here to learn more 

All it Takes is a Signature

We know that many people want to make a difference and don't know how, given the limitations of their circumstances. A simple way is by signing a petition:

Donate to PANDORA
 Through EBAY
Giving Works 
ebayEbay Giving Works is a special program where a percentage of sales can be donated to a charity organization. We want to thank several merchants, who have already supported and continue to support us. Here are the instructions. 
Agent for Change
Marly's Blog
Agent for Change

Marly 2011

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