A Non-Profit Organization
501c3
|
What's New
|
|
|
| |
Board Members
 |
Meet Marly (Marla) Silverman, Founder & Public Policy
Community Advisor for P.A.N.D.O.R.A.
From The Founder's Notebook |
|
From the Desk of Dr. Kenneth Friedman, PhD, Vice-President, Senior Advisor & Chairman Public Policy Committee |
|
Community Outreach, Special Events
Upcoming Conferences |
|
Hispanic Community Outreach |
|
Yvette Taylor - Humor Corner
Yvette's Latest Essay |
|
Doctor Lina Garcia |
|
Lean On Me - How To Cope
Karen Sacks, M.S., L.C.P.C., L.M.H.C., Director, Public Policy Committee |
|
|
|
|
|
|
|
|
|
|
|
|
| |
Advocacy
Advocate Extraordinaires Pat Fero, Mary Schweitzer, Rik Carlson, Steve DuPre, Karen Campbell, Meghan Shannon and Patricia Blankenship have participated by preparing a report for the Obama-Binden transition team. They have worked with a national committee discussing health care issues by providing input on what we need for CFS/ME patients and their families to have quality of life.
Click here: http://www.vtcfids.org/obama_biden_report.html
P.A.N.D.O.R.A. 's Advocacy
 to read Marly Silverman's blog - Agent for change and get involved!
******
P.A.N.D.O.R.A. 's Grass Roots Initiatives
by Marly Silverman
 I Need A Hero Project© Campaign
HOUSE OF REPRESENTATIVES:
We are proud to say that due to the work of P.A.N.D.O.R.A. , 3 Florida congressmen: Rep Ileana Ros-Lehtinen, Rep. Robert Wexler and Rep. Ron Klein signed on our behalf to the letters sent to the Dept of Health & Human Services, Secretary Leavitt to ensure the charter renewal of the CFSAC. Please send them a thank you letter today!
But our work is never done! Here is the contact web page for the 25 House Representatives in the State of Florida.
Once you are on their web site click in their Contact Page and send them an e-mail asking them to support:
1) P.A.N.D.O.RA.'s appropriation request for the Florida Neuroendocrineimmune Institute (FNI);
2) To encourage Dr. Zerhouni at the National Institutes of Health (NIH) to ensure that CFS/ME/CFIDS and other neuroendocrineimmune disorders are given appropriate funding for much needed research;
3) And participate and support our I NEED A HERO! Campaign for a congressional caucus.
SENATE
We also need to effectively create awareness and educate our U.S. Florida Senators as well about the quality of life issues of our community.
Click here for Senator Mel Martinez
Click here for Senator Bill Nelson
Once you are on their web site click in their Contact Page and send them an e-mail asking them to support:
1) P.A.N.D.O.RA.'s appropriation request for the Florida Neuroendocrineimmune Institute (FNI);
2) To encourage Dr. Zerhouni at the National Institutes of Health (NIH) to ensure that CFS/ME/CFIDS and other neuroendocrineimmune disorders are given appropriate funding for much needed research;
3) 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. For this reason and many more we need to engage you and become an agent for change. The same needs to be repeated across the nation.
P.A.N.D.O.R.A.'s will attend the 2-day CFS Advisory Committee meeting at the Department of Health and Human Services on October 28-29, where we can see in action Rebecca Artman, the sole patient advocate in this distinguished committee representing our patient community so well!
Empty Chair Project
P.A.N.D.O.R.A.'s will attend the 2-day CFS Advisory Committee meeting at the Department of Health and Human Services on October 28-29, where we can see in action Rebecca Artman, the sole patient advocate in this distinguished committee representing our patient community so well!
The Empty Chair Project -
During my testimony and P.A.N.D.O.R.A.'s testimony to the CFS Advisory Committee, I bring pictures of CFS patients from just about every state in the U.S and I explain what the Empty Chair Project is and what it means to our community. Several other CFS organizations are our partners in this project and they include: the Vermont CFIDS Association, The New Jersey CFS Association, H.O.P.E., The involvement with this project.
I also remind them that we will bring the Empty Chair project to every CFSAC meeting until they find ways to communicate with our nationwide community on how the CFSAC is making a difference in in the lives of CFS patients.
Disabled members of our community who can't afford or are not physically able to travel to Washington DC because they are too ill need to be aware of the work of this important committee.
Click here to read P.A.N.D.O.R.A.’s letter to DHHS to the attention of Secretary Leavitt and Dr. John Agwunobi, former Assistant Secretary of Health outlining our overall concerns. Back to top |
| |
Miami CFIDS Support Group
Contact:
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 Florida
FIBROMYALGIA - Fibro Fix - Orlando
Fibro Fix is your 1-stop for all you FIBROMYALGIA needs!
Treatment relieves all symptoms daily.
Complete details: Symptoms, Testing, Diagnosis, Treatment. Meds, over the counter meds & tricks & tips. Works quickly.
Live pain free without pain pills, sleep, be strong, clever and happy. Free information & help listed below.
Click here to view Anne's web-site: www.fibrofix.com
Email Anne: annehillebrand@bellsouth.net
Fibro Fix is on FACEBOOK, too!
Anne says, "I think we have found the best way for FibroFixers to learn, share info and keep in touch. Easy to use, no login or password. Is like a Guest Book, email, Message Board, etc. If we get bothered by creeps, I can just block them. Free to join, free to use. You can share photos with your friends if you like."
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: Essie510@juno.com
Palm Beach County
Fibromyalgia Support Group of Boynton Beach
Location: The Pointe at Newport Place
4773 N.W. 7th Court
Boynton Beach, Florida 33426
Meetings:
The 1st Thursday each month at 7:00 pm.
The 3rd Thursday each month at 2:00 pm.
The 4th Thursday of each month a daytime LUNCHEON.
Our meetings:
Guest speakers are invited to our monthly meetings to teach us how to treat fibromyalgia using professional methods. Our meetings are casual and informal; discussions are held and support is given. Our goal is to heal this syndrome, step by step, by removing the symptoms that effect and escalate the discomfort of fibromyalgia and regain our quality of life.
Directions: N.W. 7th Court is EAST off Congress Avenue - onto Hypoluxo & 0.8 of a mile is The Pointe at Newport Place.
Facilitator: Donna Boyer
Co-Facilitator: Lissa Ray
Contact Donna: dleeboyer6@yahoo.com
# 561-279-2844
Northern Palm Beach County
If you live in the Northern Palm Beach area and would like to be part of guaifenesin groupo, call Bonnie 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.
NEW
Reflex Sympathetic Dystrophy Support Group
FREE to join: Forums, articles, members & diaries
Check it out:
mdjuction.com/reflex-sympathetic-dystrophy
Questions & Info: Beth@Reliefix.com
 For other states empowerment/support group meetings
Back to top |
| |
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
Back to top |
| |
Research Trials for Neuroendocrineimmune Disorders
NEW!
Participate in the Fibromyalgia Wellness New NIH-Sponsored Online Project for Fibromyalgia to Begin June 1, 2009. It is a new experimental symptom reduction program for fibromyalgia sponsored by the National Institutes of Health will become available June 1st for a limited number of participants. “The Fibromyalgia Wellness Project” is a web-based intervention program that is part of a research study being directed by William Collinge, PhD, of Collinge and Associates, an independent research organization funded by NIH.
NEW!
Read about the latest Lyme Disease Guidelines from Dr. Joseph J. Burrascano, Jr., M.D., President of the East End Medical Associates, PC, East Hampton, New York. Dr. Burrascano is also a board member of the International Lyme & Association Diseases Society.
ONGOING!
Participate in the: Lyme & Associated Dieases Registry which enables doctors to easily gather data about diagnosis & treatment of Lyme diease. Data will be compiled & analyzed.
Contact: Colleen Nicholson
JCN4JC@aol.com or #561-286-7196
Click here: www.turnthecorner.org
ONGOING! 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 18-65
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.
The Niagara Health Study at Brock University, Canada
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.
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
ONGOING! Evaluation, Treatment, and Follow-up of Patients With Lyme Disease
This study is currently recruiting participants.
Verified by National Institutes of Health Clinical Center (CC), September 2008
CLICK: NCT00028080?term=Lyme+disease&rank=1
 Purpose
This study is designed to establish a population of patients with Lyme disease for evaluation, treatment and follow-up to learn more about the infection.
Patients with active Lyme disease may be eligible for this study.
Participants will have a medical history and physical examination and diagnostic evaluations as appropriate to their individual condition. Laboratory tests may include routing blood and urine tests, X-rays, or other imaging studies, body fluid or tissue cultures, skin biopsy and tests for allergic or immune responses. Treatment will include only medications approved by the Food and Drug Administration, given according to accepted dose schedules and ways of taking the medicines. All diagnostic tests and treatments will be according to standard medical practice for the disease. No experimental procedures will be offered under this protocol.
Patients will be followed as needed for evaluation and treatment of their condition. In general, they will be asked to return at the end of therapy, then 3, 6 and 12 months later, and then every 6 to 12 months. More frequent visits may be required or less frequent visits may be allowed, depending on the individual's condition.
Participants may be asked to undergo the following additional procedures for research purposes:
- Extra blood draws to study Lyme disease and other inflammatory conditions. Blood will be drawn from arm veins. The total amount drawn during any 6-week period will not exceed 450 cc (30 tablespoons) for adults and 7 cc (1/2 tablespoon) per kilogram (2.2 pounds) of body weight for children under 18 years of age.
- Leukapheresis to collect large numbers of white blood cells. Whole blood is collected through a needle in an arm vein, similar to donating blood. The blood circulates through a machine that separates it into its components, and the white cells are removed. The rest of the blood is returned to the body through the same needle. Only adults 18 years of age and older will be asked to undergo leukapheresis.
Back to top |
| |
Elsewhere In Our Worldwide Community
Click here to view European Society for ME Web site
and read about Biomedical Research that is greatly needed.
Ten leading scientists in Europe have formed a Think Tank for ME and will hold their first meeting on June 13, 2009. They want to initiate an effective research effort to find the secret behind the mystery disease that cripples an increasing number of lives.
Click here to view their Scientific Panel from all over the United Kingdom
Click here to view community outreach & special events
Click here to view Upcoming Conferences
Click here to view The Spanish National Platform for FM, CFS and MCS. This document has been translated & revised by rheumatologist Dr. Ferran J. García.
Back to top |
| |
Meeting of the Chronic Fatigue Syndrome Advisory
Committee (CFSAC) - Click here for our CFSAC informational page.
WHERE: Department of Health and Human Services; Room 800 Hubert H. Humphrey Building; 200 Independence Avenue, SW.; Washington, DC 20201.
SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.
DATES: TBA for a Fall 2010 Date
TIME: 9 a.m. until 5 p.m.
ADDRESS: Department of Health and Human Services; Room 800 Hubert H. Humphrey Building; 200 Independence Avenue, SW.; Washington, DC 20201.
FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr. P.H.; Deputy Assistant Secretary for Health (Women's Health); Department of Health and Human Services; 200 Independence Avenue, SW.; Hubert Humphrey Building Room 712E; Washington, DC 20201; (202) 690-7650.
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 comphehensive report on GWI by the Research Advisory Committee on Gulf War Illnesses
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.
VETERANS
From Senator Ron Klein: "The VA announced a complete list of private colleges and universities participating in the post 9-11 GI bill program. You can find info for your state and the details of each of the school's terms of participation here":
Click here for GI Bill Information
Please feel free to pass this on to other Veterans.
Back to top |
| |
Back to top |
| |
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 addition: Dr. Albert Robbins 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.
Back to top
|
| |
Lean On Me - How to Cope
Karen D. Sacks, M.S., L.C.P.C., L.M.H.C. , is one of our board members and serves in our Public Policy Committee. Karen is a nationally certified, licensed counselor, communications and life coach in practice for over 28 years. Her personal insight comes from the fact that she has fibromyalgia and suffers from migraine headaches. She knows first hand the myriad of feelings and challenges that come with pain, both emotionally and physically.
Karen is the creator of the "Tools for Life", a practical approach to take back control of your life. Visit her P.A.N.D.O.R.A. page and if you have a question about coping and empowerment, family issues and needs guidance, Karen is the person to ask.
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.
Back to top |
| |
Cort Johnson, founder of Phoenix Rising
|
| |
Pat Fero, CFS Co-Op Project
Details coming soon.
In the meantime...Click here to read Pat Fero's interview by Cort Johnson
Back to top |
| |
Advocates Extraordinaire Spotlight
|
| |
Donation Highlights
Marly Silverman was ramdomly chosen to receive a $250 donation from the Case Foundation for her favorite charity - You guessed right - P.A.N.D.O.R.A.
This donation will be applied towards the upcoming walkathon - WALK IN MY SHOES™ on May 23, 2009 at C. B. Smith Park in Pembroke Pines.
Make a tax-deductible donation today to P.A.N.D.O.R.A. Click here
|
| |
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!
Back to top |
| |
Click on the icon below for complete information and to support DePaul University educational program for chronically ill students. P.A.N.D.O.R.A. provided a 5 year grant to this program in order to assist students with Neuroendocrineimmune Disorders with college expenses.
Back to top |
| |
Read More
Back to top |
| |
Feature Articles
Click here to view The Spanish National Platform for FM, CFS and MCS. This document has been translated & revised by rheumatologist Dr. Ferran J. García, Balcelona, Spain, June, 2010.
Flu Shot...Or Not? in PDF format by Yvette Taylor October, 2009
Deliberately Choosing Joy in PDF format by Paula Hayward June 30. 2009
Elhers-Danlos Syndrome in PDF format by Marla Schwartz June 30, 2009
Scientists Warn of Deadly Deer Tick Virus, WBZTV Boston, MA, May 22, 2009
Click here to print Experiencing the Santa Barbara Jesusita Fire by John Herd
February 2009 Newsleter Editorial
The Art of Staying Connected, by Amanda Crowe, MA, MPH, reprinted with permission from the American Pain Foundation.
Don't Let Chronic Pain Ruin Your Holiday 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
Back to top |
| |
Back to top |
| |
Humor Corner
Click here for Yvette's humor corner
Click here to read "What's In A Name"
Click here to read "Who? Me, Walk?"
Click here to read "Flu Shot.... Or Not?"
Back to top |
|
|
Click here to go to the Empowerment Group Meetings page on our web site
