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What's New
SPAIN INITIATIVE! Advocacy en Español!
Click here for the picture that Clara Valverde, sent us in regards to their Popular Legislative Initiative for FMS and CFS medical services in Catalonia, Spain. They handed in 80,000 signatures (50,000 are needed to present the law in their
Parliament) and we will still do another delivery before the summer (as a tip...). She wanted us to tell you "
Thank you all for your wonderful support!" Note that their organization is fighting for CFS-ME and fibromyalgia in one swoop. Kudos to Clara Valverde and to the other women of valor behind the efforts of "Liga SFC". Viva las mujeres de Espana! Ellas tiene muchas ganas! (Pardon nuestro Spanish por favor!)
Dr. Kenneth Friedman, former and distinguished member of the CFS Advisory Committee, and currently Chairman of our Public Policy Committee who wrote this most eye opening article regarding the state of CFS research at the National Health Institutes (NHI). A must read for CFS patient advocates! Click here for article.
Tell your Senators to support Medicare Drug Prices Negotiations.
Support the Medicare Rights Center efforts and call your Senators today!
P.A.N.D.O.R.A. 's Grass Roots Initiatives
by Marly Silverman
Support the I Need A Hero Project - Congressional Caucus
If your congressman is having a Town hall meeting or open house in your neighborhood I hope you can attend as it is a solid opportunity for patient advocates to communicate with our congressional leadership without having to fly to our nation's capital. If you live outside of South Florida please send P.A.N.D.O.R.A. an e-mail with the information on any town hall or open-house meetings in your area so we can publish on our web site.
We attended the Aug 14, 2007 meeting at the Light House Point location and we personally thanked Rep. Ron Klein for signing the letter addressed to the NIH Director - Dr. Zerhouni. Click here to read the letter. Please note that we are pleased to report that from Florida, Reps. Ileana Ros-Lehtinen, Ron Klein and Robert Wexler already signed off on the NIH letter.
If your representative has yet to sign this important advocacy letter, attending a town hall meeting is a perfect opportunity to take a copy fo the NIH letter to the meeting with you and to mention the name of his colleagues who are already supporting our efforts in Florida and beyond and ask him to add his signature and support. Below is the introduction letter that you need to combine with the letter from the NIH.
We hope to engage our Florida U.S. Senators as well! Please send them a e-mail supporting P.A.N.D.O.R.A.'s efforts.
Click here for a letter of introduction from P.A.N.D.O.R.A. regarding your request addressed to a member of the Senate.
Click here for a letter of introduction from P.A.N.D.O.R.A regarding your request addressed to a member of the House of Representatives.
NOTE: You can use the letter of introduction simply as it is, download it to your personal computer and print it and attach the NIH letter above to it. You can use it as sample letter and modify it at your convenience.
 I Need A Hero Project© Campaign
We are proud to say that P.A.N.D.O.R.A. delegates were able to get 3 Florida congressmen to sign up, more than any other state represented in the letter generated by the CFIDS Association. Indeed it was a major accomplishment for our advocates Barbara Soliday and Dr. Lina Garcia who were part of the P.A.N.D.O.R.A.'s Florida delegation. They deserve our sincere gratitude as well. They walked the hall of Capitol Hill with efficiency, grace and perseverance. They were on a mission!
But our work is never done! We need to effectively create awareness and educate our Senators about the quality of life issues of our community.
When contacting your senator (s) and or representative, make sure you ask in your e-mail: To support P.A.N.D.O.RA.'s appropriation request for the Florida Neuroendocrineimmune Institute (FNI); to join other senators and sign up on the letter spearheaded by Senator Reid asking Dr. Zerhouni to ensure that CFS/ME/CFIDS is given appropriate funding for much needed research; and participate and support our I NEED A HERO! Campaign for a congressional caucus.
Do you know that there are 25 representatives in the House from Florida? There are 435 voting representatives in the House of Congress. We have an enourmous task in our hands. In the future we will need your help to engage your Florida House representative to support our I NEED A HERO! project - a campaign to establish a Congressional Caucus for CFS, FM, GWI and MCS (neuroendocrineimmune disorders). The same needs to be repeated across the nation.
P.A.N.D.O.R.A.'s participation in the CFIDS Lobby Day was enhanced by the opportunity to also attend the 2-day CFS Advisory Committee meeting at the Department of Health and Human Services. It was extremely rewarding for our delegation to watch Rebecca Artman, the sole patient advocate in this distinguished committee representing our patient community so well!
P.A.N.D.O.R.A.'s advocates Barbara Soliday, Dr. Lina Garcia who were part of the P.A.N.D.O.R.A.'s Florida delegation during Lobby Days 2007 deserve our sincere gratitude as well. Click here to see the picture of these amazing 2007 Advocates Extraordinaire in action.
OTHER GRASS ROOTS INITIATIVES WHICH ARE ONGOING:
The Empty Chair Project -
During my testimony to the CFS Advisory Committee, I mentioned the Empty Chair Project and what it meant to our community. I also highlighted the Vermont CFIDS Association involvement with this project. I also stated that we would bring the Empty Chair project to every CFSAC meeting until they had the capability to broadcast the meeting in "real time" to the disabled members of our community who can't afford or are not physically able to travel to Washington DC because they are too ill. The picture from the Vermont CFIDS Association shows the gathering of 22 individuals determined to make a difference for our community in Vermont and beyond.
Click here to read P.A.N.D.O.R.A.’s latest letter to DHHS to the attention of Secretary Leavitt and Dr. John Agwunobi, Assistant Secretary of Health outlining our overall concerns. Back to top |
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Upcoming meeting: April 3
Neurology and Sleep Medicine
Speaker: Dr. Damon Salzman
Diplomate of the American Board of Psychiatry and Neurology, Diplomate of the American Board of Sleep Medicine
Miami CFIDS Support Group
What: TBA
When: TBA
Topic: TBA
Contact people:
1. Meeting Coordinator: Barbara Soliday at bsoliday@excite.com
Phone: 305 666 7262. They have an online group through yahoo.com. E-mail Barbara for complete information.
Central FL CFS/FM/MCS Support Cyber group.
If you live in Central Florida and or would like to be part of an online group here is the information on the Central FL CFS/FM/MCS Support Cyber group. The moderator is Leslie Pallone, who is also a member of P.A.N.D.O.R.A. and a long time, experienced patient advocate. She is also a mental health counselor who provides services to CFS/FM/MCS patients at a very special rate- lower rates than most co-payments.
Contact:
Moderator - Leslie Pallone Contact: Essie510@juno.com
ANOTHER SPECIAL FIBROMYALGIA EVENT IN PALM BEACH COUNTY!
Contact: Bonnie Jacobson at 561-575-1978 to reserve a seat
If you live in the Northern Palm Beach area and would like to be part of the group Bonnie is trying to develop, please contact P.A.N.D.O.R.A. and or call Bonnie directly at 561-575-1978. The group’s vision is to provide ongoing support for individuals who want to try the guaifenesin treatment protocol devised by Dr. St. Armand.
New Online Group
Dominie Bush, has a new online support group for individuals with neuroendocrineimmune disorders. It is titled
Dominie's Support Group on Yahoo at http://health.groups.yahoo.com/group/dominie. The facilitator is Christina. If you want to ask a question, get feedback from others with FMS/CFIDS, share information, or just vent about this illness, visit the site and click on JOIN THIS GROUP.
We recently became aware of a Boynton Beach support group for Fibromyalgia. Details to come soon.
 For other states empowerment/support group meetings
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05.05.2008
JUST IN TIME FOR P.A.N.D.O.R.A.'s Awareness Month for Neuroendocrineimmune Disorders celebrations, Yvette Taylor, a director of P.A.N.D.O.R.A. is honored by the Sun-Sentinel as one of the Unsung Heroes in the South Florida community.
02.02.2008
P.A.N.D.O.R.A.'S FIRST ANNUAL GOLF CLASSIC
GOLF FORE A CAUSE! SWING FORE A CURE!
01.15.2008
AN IMPORTANT E-MAIL ANNOUNCEMENT!
New York Times reporter asks his readers: IS FIBROMYALGIA REAL? This old myth surfaces once again and we need your voice more than ever!
01.12.2008
The 2008 AMERICA'S GIVING CHALLENGE
PARADE MAGAZINE & THE CASE FOUNDATION ARE DONATING $750,000 TO CHARITIES SELECTED BY COMMUNITY- MINDED INDIVIDUALS
Join Marly & become an Agent for Change for our community
12.27.2007
Don't Let Chronic Pain Ruin Your Holiday Season
Sleep O Elusive Sleep
IMPORTANT ANNOUNCEMENTS FROM P.A.N.D.O.R.A
For a complete list or previous newsletters click here
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Research Trials for Neuroendocrineimmune Disorders
AFFTER RESEARCH SURVEY deadline is April 21, 2008
This questionnaire should take about 10 minutes to complete; we appreciate you taking the time to participate!
Start the survey by clicking here: AFFTER's Questionnaire 2008
NEW! CFS-ME PEDIATRICS RESEARCHER NEEDS YOU AT DEPAUL UNIVERSITY!
If you are a parent with a child suffering with CFS-ME, get involved with research issues directed to children and teenagers. The Chronic Fatigue Research Team is looking for families with children with CFS-ME.
Contact:
DePaul University
The Center for Community Research
990 W. Fullerton Ave.
Chicago, Il. 60614
773-325-4628
NEW! University of Miami CFS-ME/GWS NIH Research Center
Good Day-Bad Day Chronic Fatigue Syndrome Research Study
A. Requirements: Participants must
1. Have CFS
2. Be between 18-55
3. Live in Miami-Dade or Broward Counties
Click here for complete information and requirements
NEW!
Dr. Nancy Klimas is now recruiting for a CFS/GWS research study!
Purpose of study: To use a new method (called microarray) to find genetic markers that may be related to Gulf War Illness (GWI) and Chronic Fatigue Syndrome (CFS). This will help us better identify and understand the likely causes of these illnesses. Click here for complete information.
NEW!
Fibromyalgia Clinical Trials
National Pain Research Institute, Winter Park, Florida
Joan Cutillo, LPH, CCRC
407-622-5766 extension 1420
Fax 561-372-0219
Beth Israel Medical Center, New York City
Lisa Shichijo, Clinical Research Coordinator
Department of Pain Medicine & Palliative Care
Phone 212-844-8533
Click here for information on additional locations throughout the country and in Canada, exclusions and requirements .
Source: Pro-Health FM Newsletter
NEW! Click here for The Nature & Management of Fatigue Study
This is an international, 12 month research study of fatigue in people living with a chronic illness who are aged 18 or over. The aim is to describe fatigue in chronic illness and how people manage their fatigue.
NEW! The Niagara Health Study at Brock University, Canada
NEW! Dr. Nancy Klimas is now recruiting for a CFS/GWS research study!
Purpose of study: To use a new method (called microarray) to find genetic markers that may be related to Gulf War Illness (GWI) and Chronic Fatigue Syndrome (CFS). This will help us better identify and understand the likely causes of these illnesses. Click here for complete information.
AFFTER - Advocates for Fibromyalgia Funding, Treatment, Education and Research, Inc. is conducting a research project. For complete information go to our Research Page.
NEW!
Fibromyalgia (FM) research is being conducted in our back yard as well as in the state of Florida and at other U.S. locations.
Contact: Karen at 954-786-7331 or for additional information regarding the trial, please visit the FDA web site or click here and choose all 6 items displayed.
For a complete list of Research studies in Florida and beyond click here
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Elsewhere In Our Worldwide Community
New Jersey Chronic Fatigue Syndrome Association and Monmouth Medical Center Co-hosted the NJCFSA Fall 2007 Conference at
Sheraton Conference Center,
Eatontown, New Jersey, on
October 7, 2007. During the special educational event Drs Kenneth Friedman and Dharam Ablashi received the 2007 Achievement Award.
Dr. Kenneth Friedman
In order to celebrate Dr. Kenneth Friedman's receipt of such a wonderful award, P.A.N.D.O.R.A. published a congratulatory ad in the NJCFSA's conference book.
 to see the congratulatory advertisement from P.A.N.D.O.R.A.
Dr. Dharam Ablashi and Eilleen Holderman, Trustee,
New Jersey CFS Association
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CFS Advisory Committee Meetings and Research Advisory Committee on Gulf War Illnesses Meetings Announcements
The CFS Advisory Committee wil meet on
May 5-6, 2008!
Click here for the announcement posted on their web site.
While on their web site please check to see if the minutes of the Nov 28-29, 2007 meeting have already been posted. If so download the PDF file and read it carefully.
As a patient, as a caregiver or as a patient advocate, you need to remain informed about the crucial issues affecting our community. Click here for Federal Register Announcement.
Click here for the CFSAC web site
This is a meeting that patients, family members and advocacy organizations in our community should attend. We all need to be part of the solution!
Click here for The Research Advisory Committee On Gulf War Illnesses upcoming Committee meeting in Washington, DC, in Room 230 of VA Headquarters, 810 Vermont, NW. Click here for the meeting's preliminary agenda.
Committee meetings are open to the public and include time reserved for public comments. A sign-up sheet for five-minute comments will be available at the meeting. Members of the public who speak are invited to submit a 1-2 page summary of their comments at the time of the meeting for inclusion in the official meeting record. Individuals do not need to pre-register to attend or speak at the meeting. However, because meetings are normally held at VA headquarters or facilities, all attendees will be required to check in and show valid ID at the security desk.
The Committee welcomes suggestions and information from veterans, physicians, scientists, and members of the general public regarding its mission
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In The News
01.08.2008
The FDA today warned seven compounding pharmacies to cease marketing estrogen/progestin products containing estriol ...read more on MedPage
The FDA has issued a consumer update on their web site:
Bio-Identicals: Sorting Facts from Myths
For More Information
FDA's Office of Women's Health
www.fda.gov/womens/
Menopause and Hormones
www.fda.gov/womens/menopause/
Free publications for women and their families
www.fda.gov/womens/pubs.html
FDA Press Release: FDA Takes Action Against Compounded Menopause Hormone Therapy Drugs
www.fda.gov/bbs/topics/NEWS/2008/NEW01772.html
Consumer Update: The Special Risks of Pharmacy Compounding
www.fda.gov/consumer/updates/compounding053107.html
ARCHIVES:
10.26.2007
Marly Silverman is profiled on Pro-Health e-newsletter.
 To read the article written by Kristy Katzman
10.04.2007
P.A.N.D.O.R.A.'S board member Sabrina Johnson dazzles audience in Washington D.C.!
Sabrina Johnson, once again was one of the main guest speakers at The 2007 Minority Women’s Health Summit; Women of Color: Addressing Disparities, Affirming Resilience, and Developing Strategies for Success’ convened by The U. S. Health and Human Services Office on Minority Health and Office on Women's Health.
Ms. Johnson, the Founder and President of F.A.C.E.S.- Fibromyalgia Association Created for Education and Self-Help, Inc. was invited to participate in this special event addressing health issues, challenges and disparities experienced by women of color in the United States. The title of her presentation was
"Fibromyalgia, Chronic Fatigue Syndrome, and Pain Management Disparities faced by Women of Color and disabled Law Enforcement Officers". The event was held on August 23-27, 2007 in Washington DC.
P.A.N.D.O.R.A. is proud to have Ms. Johnson as one of our dedicated board members and if you wish to contact her to discuss issues that affect our community and more specifically in the African-American community please visit her web site at www.fibrocop.org.
Click here for the press release from F.A.C.E.S
Click here for the unique fund raising efforts from F.A.C.E.S.
9.20.2007
Richard Payey, who was in prison for a conviction on drug traficking and drug possession, receives a pardon from Florida Governor Charlie Crist and will be released from prison immediately.
 to read Richar Paye's story that finally had a good ending.
Our sincere gratitude to the Pain Relief Network who helped with the efforts to release Richard Paye. The American Pain Association and P.A.N.D.O.R.A. were among the many advocacy organizations that spread the word about Paye's ordeal and participated in a nationwide letter campaign to Florida Governor's Crist.
It is sad that a law that in principle intended to combat drug traficking instead allowed overzealous law enforcement agencies to charge a chronically ill patient with drug traficking causing greater financial, physical and emotional pain to Richard and to his family. The irony also was found in the fac that Paye while in prison was being prescribed the same amount and a similar type of pain killer that caused him to be arrested, tried, convicted and sent to prison for a long time.
P.A.N.D.O.R.A. is grateful to our members who wrote letters to our Governor asking him to remedy this great injustice. Richard Paey is a chronically ill patient who was arrested, tried and convicted as drug trafficker under a Florida mandatory drug law that requires that personal possession of a certain amount of drugs, in this case, pain killers medically prescribed for his illnesses, be considered as if the individual had the intention to sell and to distribute.
Click here to read one of the many articles depicting his story
9.04.2007
8.20.2007 -
HAPPY ANNIVERSARY TO THE CFIDS ASSOCIATION!
The Summer Quarterly Publication of the CFIDS Chronicle, published by the CFIDS Associaton, under the Profiles Feature- Organizations Making History - by CFIDS Association Staff Contributors. The article celebrates its 20th anniversary by highlighting the many other organizations making a difference in teh lives of people with CFS and related illnesses.
You will find quotes from several hard-core patient advocates in our community among them: Mike Munoz, president of Rocky Mountain CFIDS/FMS Association, Ken Casanova, president Mass CFIDS Association, Dr. Lucinda Bateman, founder of OFFER, Ray Coliton, Manager of Co-Cure, John Herd, winner of the P.A.N.D.O.R.A. Sand Castles Awards for Outstanding Male Advocate of 2007, and Rich Carson, from Pro-Health, one of our wonderful benefactors.
Marly Silverman, the founder of P.A.N.D.O.R.A. was also quoted in the article - "Empowerment, respect, dignity and safety, - the life net to a very unkind world that doesn't embrace CFS and other neuroendocrineimmune disorders in the way it should. That's what organizations like ours provide"
This is an issue that you don't want to miss it!
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 JUNE 21, 2007
FIRST NEW DRUG EVER APPROVED BY THE FDA FOR FIBROMYALGIA!
- Lyrica (Pregabalin), Pfizer
The first new drug ever to be approved by the FDA for Fibromyalgia was released today on the FDA web site. Lyrica, (generic for Pregabalin) is manufactured by Pfizer, Inc. Click here for FDA press release
Purdue Pain Advocacy Community Newsletter features article about PANDORA written by Kimberley Tiller, RN, MPH, page 13, under 'PAIN COMMUNITY CONNECTION". Read it here.
'Give Me Your Tired,' Conference Invites Chronic Fatigue Patients, Doctors Looking For Answers - Interview with Rebecca Artman. Click to read more
Gulf War Veterans' Time Leaves Lasting Impact on Their Health. Read the article. Some Doctors, Friends, Relatives Dismiss Sickness. Click to Read Article
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Need an CFS specialist, an Attorney, a Chiropractor physician, a Rheumatologist, a Neurologist or a Massage Therapist? We have them all listed for you. The list is expanding. Remember to read our disclaimer.
Latest additions: Dr. Albert Robbins and Social Security Disability Attorney David Goetz. Click here for the Wellness Directory
Disclaimer: The directory is provided as a convenience to the Neuroendocrineimmune Disorders community. The physicians, medical practitioners, therapists, medical vendors, providers, attorneys, businesses and other professionals listed on the directory were provided to P.A.N.D.O.R.A. by "word of mouth". Any information or listings in the directory should not be construed as an endorsement of any particular party, services or professionals by P.A.N.D.O.R.A.
P.A.N.D.O.R.A. Inc., is in no way responsible for the accuracy, professional standing and practices of these professionals AND HAS NOT verified the accuracy OF SUCH INFORMATION for the purpose of INCLUSION ON THE DIRECTORY. It is the patient's responsibility to verify their professional standings. The decision to use the services of those listed here are the sole responsibility of the user's list.
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Lean On Me - How to Cope
Phyllis Friedman is a CFS/FM individual whose background in social work and geriatric issues are quite suitable to handle our new coping and empowerment column titled “Lean on Me”. Phyllis will reply directly to you, but depending on the question or topic, she might provide the answer on our web site as well. You can contact her at Pfriedman@pandoranet.info.
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Cort Johnson, founder of Phoenix Rising
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Pat Fero, CFS Co-Op Project
Details coming soon.
In the meantime...Click here to read Pat Fero's interview by Cort Johnson
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Advocates Extraordinaire Spotlight
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Donation Highlights
Join Marly and become an agent for change!
Marly Silverman has entered the America's Giving Challenge. Click here for her flyer.
The individual who has the most unique amount of online donations (minimum $10) through a charity badge can qualify to win $50,000 for their charity of choice.
Deadline for the challenge ends January 31, 2008 at 3 pm. EST. The more unique donations she gets, the better her chances are to win the $50k for P.A.N.D.O.R.A.
Hop on board.
Make a tax-deductible donation to your choice of any of our three categories; General, Research or Advocacy. Read more
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You Shop, P.A.N.D.O.R.A. Wins! Help your favorite cause for free.
Shop through IGive.com
At over 680 brand name stores, a portion of each online purchase is donated to P.A.N.D.O.R.A. Your stores, OUR cause, their money.
 Start With $5 Free! IGive.com will donate an additional $5 to P.A.N.D.O.R.A. when you join and shop within 45 days. Go to IGive.com Save time and money tooo!
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Click on the icon below for complete information and to support DePaul University educational program for chronically ill students.
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Lina Garcia, M.D. is a young physician who will be practicing medicine in the United States as soon as her medical license is approved. She is smart, dedicated and extremely diligent in her contacts with the public. Dr. Garcia has a great interest in specializing in Neuroendocrineimmune disorders like CFS, FM, Gulf War syndrome and related illnesses. P.A.N.D.O.R.A. has embraced Dr. Garcia as part of our mentoring and educating young physicians so our community will have access to new talent, caring, knowledgeable, compassionate and dedicated physicians. Read More
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Don't Let Chronic Pain Ruin Your Holida Season by Karen Sacks, M.S., L.C.P.C., L.M.H.C.
Multiple Chemical Sensitivities Update by Albert F. Robbins, D.O., MSPH, FAAEM
Pursuing a Social Security Disability Claim: Finding Your Way Through the Legal Maze by David Goetz, Attorney At Law
Martin Pall Feature Article- Chronic Fatigue Syndrome and Related Illnesses: An Overall Mechanism
Jason Newfield - Focus on Disability Functional Capacity Testing
Robert Craig Is a Cut-Above With His 'Robert Craig Signature Haircare Line' - article by Marla Schwartz
Is a Name Change for Chronic Fatigue Syndrome in the Horizon?
In English - CFS – An Invisible Illness
In Spanish - El síndrome de fatiga crónica, una enfermedad invisible y debilitante
In Portuguese - A Prevalência de Fibromialgia uma Revisão de Literatura
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Humor Corner
Click here for the humor corner.
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Click here to go to the Empowerment Group Meetings page on our web site