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

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P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc. Newsletter
In This Issue
Intimacy and Pain
PANDORA chosen as official charity by Florida Health Expo
9th International IACFS/ME Conference
Sleep Survey for FMS
Delray Research Associates
This is an easy-to-remember telephone
number that connects people with important community services. While
services vary from community to community, 2-1-1 provides callers with
information about and referrals to human services such as food banks,
clothing utility assistance, respite care, and more.

New Group in Boca Raton, Fl
If you are interested in joining an FMS support group in Boca Raton, contact Renee Gelfond at 561-995-0865.

Clike here for a list of support &
empowerment  groups in South Florida and beyond.

Join Our Mailing List
Assistance with medical co-pays

Patient Advocate Foundation has a program - The Co-Pay Relief - that helps financially needy individuals who have chronic pain issues (Fibromyalgia and other pain illnesses). You must have individual medical or prescription insurance to quality for this program as they only pay for co-pays. 

Click here  to apply for the
program. Applications are taken monthly. Apply now!

Join Our Mailing List

Chocolate for Valentine's Day

Heart card

American Flag


Marly Silverman, Founder, P.A.N.D.O.R.A.Be My Valentine! Sweet words to hear!

You all may not realize this, but to PANDORA, you are forever our valentine! Here at PANDORA, we have a special bond. You matter to us! Your well-being is important to us. It is the  main reason why our work continues.

Once again, we are bringing you a newsletter with pertinent information that we hope will assist you in your personal health challenges while dealing with CFS/ME, FMS, CLD, GWS/I, and/or EI/MCS. We personally know the ups and downs that neuroendocrineimmune disorders (NEIDs) can bring to our lives, yet, despite these challenges, we succeed in creating family and personal environments that are conducive to healing and wellness.

I am pleased to announce that a special grant from PANDORA honoring Dr. Steven Croft, a rheumatologist and specialist in treating fibromyalgia patients, has been implemented. The decision on how this special grant will be spent will change annually. It could be applied for medical student scholarships, scholarships for individuals with chronic illnesses, or as a grant to financially needy patients in Florida. We are leaving this open for now. We initiated this effort last year, and it was never finalized because we had hopes that Dr. Croft's current health challenges would be improved, and we then would have his input. Dr. Croft was a member of our Medical Advisory Board and was filmed with me in a video highlighting fibromyalgia treatments and patient/public education.

I am extremely saddened by the news that Dr. Croft's health has deteriorated considerably. He was my rheumatologist for many years, treating me for fibromyalgia and other associated issues. Dr. Croft is among the top treating specialists for fibromyalgia in the state of Florida and is recognized nationally. If you were a patient of Dr. Croft, you will agree with me! Nancy Villard, one of our dedicated volunteers who was also one of his lucky patients,  shared: "What can I say about a doctor that enabled me to continue working in a pressure cooker of a job with fibro for 11 years? He is kind, compassionate, and open minded. When I wanted to try botox, he made arrangements for Dr. Hirsch to go to Jackson Memorial and be trained. He always gave value to what I had to say. He listened to me and reassured me that we would never run out of options."
Dr. Croft's family has set up a page on Caring Bridge where you can read updates of his journey. Click here to leave a caring message to Steve Croft and his family. This is the time to express how much he has meant and will always mean to us all. Express and share your thoughts with Steve and his family. Mention how significant his dedication and caring concerns for FM patients have trully made a difference in the lives of fibromyalgia patients in the U.S. and abroad. Our thoughts and prayers are with him and his family.

The news buzz on FMS continues as a controversial AP article hits the net. See my take on this issue later in this newsletter.

If you have CFS/ME and are able to travel, you should strongly consider attending the IACFS/ME conference on March 12-15, in Reno, Nevada. And please do join this crucial organization or donate to it. We are all trying to support one of their most important exciting fund raising efforts - $1,000,000.00 - Yes, ONE MILLION DOLLARS! If your financial situation prevents you from donating at least in the $100 level.  Donate $5 by check and you will feel richer for it.

P.A.N.D.O.R.A. has received two  Valentine gifts:
  • We were chosen as the official charity for the Florida Health Expo, which will be held on April 19, 2009; a portion of the proceeds from the event will benefit our organization and we are extremely grateful to Steve Zuckerman, the show's producer.
  • We were given a $250 donation from The Case Foundation on my behalf. I was randomly chosen to receive this special gift as I participated in one of their surveys.
Finally, we want you to get ready for Walk in My Shoes, a walkathon to benefit P.A.N.D.O.R.A. The beautiful graphic at the bottom of this page highlighting this fitness, fun, family event, was created by Lynn Bousquet, our Volunteer Graphic Artist. She did a wonderful job! The event will be held on May 23, 2009, during P.A.N.D.O.R.A.'S Awareness Month for Neuroendocrineimmune Disorders.

I hope you enjoy our Valentine newsletter.

Till next time and in Good Health and In Beauty,

Marly C. Silverman
Publisher & Founder

P.S. As I sit here typing up this short introduction, my mom lies in a hospital room; she is very ill. Our family is hurting emotionally by the thought of losing her, the matriarch of our extended family. As much as I understand the cycle of life, that generations come and go, watching my Mom getting old and fragile is not for the weary. Please include her in your prayers.

Intimacy Pain: The Art of Staying Connected
By Amanda Crowe, MA, MPH

Sarah Spolum, 25, and Rhett Weyenberg, 32, met four years ago in a ceramics class at the University of Wisconsin at Madison. He was a fine arts major, and she was looking for a creative outlet to her speech pathology coursework. Upon graduation they opened a small ceramics studio together. In love and building a life together, the couple is now facing the tragic realities of home hospice care.
Rhett was diagnosed with melanoma in 2000. His treatment was initially successful. But, in 2007 it returned - although this time the cancer had spread to his chest cavity and lymph nodes. Despite several rounds of increasingly aggressive therapies, the cancer continued to grow. The tumors, now pushing into his lungs and other vital organs, had resulted in constant aching and jabbing pain. In addition to trying to come to terms with his prognosis, the ability to maintain physical intimacy has become more difficult. . . .

Click here to read the complete article
Reprinted with Permission of the American Pain Foundation
The News of the APF, Winter 2009, Vol. 9, Issue 1, p. 4





Sunday, April 19th, The Crowne Plaza Hotel, Belvedere Road (across from PBI Airport), West Palm Beach, Florida, will open its doors to the FLORIDA HEALTH EXPO at 9 a.m. Tickets are $15 in advance (per person) and $20 at the door. Check the  FLORIDA HEALTH EXPO site for complete information.


The Florida Health Expo is a one-day comprehensive health and wellness event for the entire family. The Expo brings together local and national natural healthy life and lifestyle solution providers, product companies, alternative practitioners, chiropractors, health food retailers, and community nonprofit organizations showcasing information about their products and services to thousands of individuals interested in leading a healthy lifestyle. There will be over 40 interactive and highly engaging seminars and keynotes; product demos and samples; complimentary health screenings; live lectures by leading industry experts; lots of free product samples; live entertainment; and film screenings.

If you can volunteer at this event e-mail here.

As the official charity, PANDORA will receive a percentage of the proceeds.

9th International IACFS/ME Conference

9th International IACFS/ME
Research and Clinical Conference  
Peppermill Resort, Reno, Nevada

Latest Advances in Virology,
Genetics, Pediatrics,
Brain Functioning, Epidemiology, Treatment, and Assessment

Click here for complete  information


The world's leading CFS/ME researchers and clinicians will be at the biennial IACFS/ME Conference to present and discuss the latest advances in Virology, Genetics, Pediatrics, Brain Functioning, Epidemiology, Assessment, and Treatment.

This Conference, which is intended for patients, caregivers, students and CFS/FM advocates, will consist of sessions designed exclusively to promote better understanding of the difficult health issues persons with CFS/FM are faced with daily.

Click here to register for the patient conference
Click here to register for the medical professional conferences

If you cannot make to the conference you can still be part of it. Show your support for the IACFS/ME Organization.
Become a member today!

If we do not support the only professional medical association for CFS/ME in the U.S., who will? Dr. Kenneth Friedman, who is a member of P.A.N.D.O.R.A.'s executive board, is also the membership chairman for the IACFS. Let's show him our support.

Sign up here to become a member. Tell them P.A.N.D.O.R.A. sent you!


by Marly Silverman
Another controversial and recent AP article on fibromyalgia (FM) and the FDA-approved drugs hit the news. And here we go again! Should we ignore it, or must we respond? My take is that whether you are a fan of the pharmaceutical companies or not, you need to be aware of the hidden agenda behind such articles. They seem to be primarily targeting the valuable work that FM researchers, physicians, and many patient advocacy organizations around the country have accomplished in the last decade by undermining and destroying these advancements, which have proven quite beneficial for the patient community.

Do the recent FDA-approved drugs help every patient with FM? The answer is no! But it is helping some. Are they curing FM patients? The answer again is no! But for many individuals, quality of life has improved. In addition, what these reporters fail to report is that these medicines were being prescribed "off label" anyway to thousands of FM patients. The pharma companies were already making money.

Click here to read the complete editorial

Sleep Survey for FMS From the Fibromyalgia Network 
How are you sleeping lately? Most patients with fibromyalgia will say that they sleep poorly and wake up feeling unrested. While many patients report that they have little trouble falling asleep, they are often not able to stay asleep, have fitful or restless sleep, or find themselves staring at the walls during the wee hours of the morning unable to go back to sleep. With medical research connecting poor sleep quality to enhanced pain and brain fog, good sleep should be considered medicine for the mind, body, and soul.

The Fibromyalgia Network invites you to participate in a survey to help us identify some of your best coping strategies to sleep-related problems. Along the way, we have included a couple of brief sleep tests to help give you a greater understanding of possible sleep issues.

The results of the survey will be presented in the April issue of the Fibromyalgia Network Journal, where we hope to offer many valuable suggestions. Your helpful input can lead to useful tips for many other patients. We realize not all of the questions will pertain to your situation, but please help us by completing the questionnaire. Your participation is vital.
All information contained in this survey is anonymous.

A Note From Delray Research Associates

Delray Research Associates is affiliated with Arthritis Associates of South Florida. Their board-certified physicians have been practicing medicine for more than 20 years, and each of them has a commitment to offering their patients the very best treatments available.
Clinical trials often offer the patient an opportunity to receive a medication that could prove to be more effective than those currently approved before it is available to the general public. Study participants also frequently have the added advantage of comprehensive medical care at no cost to them.
Participants are usually compensated for their time and travel expenses.
We constantly add new studies and would be happy to contact you when a study opportunity arises for which you might qualify. We welcome your inquiries, so please call 561-638-0956 for additional information about participating in research studies.
We currently have studies enrolling for:
Osteoarthritis of the Knee or Hip
Rheumatoid Arthritis
Philip Kallen, MD, FACT; Steven Goodman, MD, FACP; Phillipe Saxe, MD, FACP
Click here  to visit the web site of Delray Research Associates or call at 561-638-0956.

Third Drug Approved for Fibromyalgia
On January 14, 2009, the FDA approved a third drug for treatment of fibromyalgia. Milnacipan, which will be marketed under the name Savella, has been added to the FDA-approved FM medications Lyrica and Cymbalta. Savella should be available at pharmacies in March 2009. Milnacipan was originally FDA approved as an antidepressant that functions as a selective serotonin and norepinephrine dual reuptake inhibitor (SSNRI).

Milnacipan was tested in research studies with persons who have FM to determine its effects on pain reduction, physical function, and overall ability to improve quality of life for this population. Results show that research participants reported at least a 30% reduction in pain and overall improvement in daily quality of life, according to the drug's developer, Cypress Bioscience (San Diego) and Forest Labs (New York), which own the rights to Milnacipran in the U.S. and Canada. Milnacipran "is the only product approved for the management of fibromyalgia that used this complete responder analysis as its primary endpoint," observed Cypress Bioscience Jay D. Kranzler, MD, PhD, Chairman and CEO of Cypress Bioscience.

Like all prescription medications, Savella has potential side effects and cannot be taken by all individuals with FM, but it seems that for a group of FM patients it can make a difference in their quality of life.

Click here for complete information about the latest FDA approved drug for fibromyalgia. 
P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy, Inc.
A not for profit 501 (c) (3) charitable organization
Coral Gables, Florida 33134
email: contact@pandoranet.info

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