A Non-Profit Organization
501c3
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Newsletter July 20, 2007
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CFS/FMS Empowerment Group at Temple Sholom August 2007 Meeting nationwide. We hope you will attend! |
If you live in South Florida the
CFS/FM Empowerment Group Meeting at Temple Sholom invites you to attend their next meeting on August 1, 2007 from 2:30 to 3:30 pm at Temple Sholom, Pompano Beach, Florida. At the next meeting August 8, 2007, a film production crew will be there to film the group in action. It is part of an educational health segment on Fibromyalgia to be broadcasted nationwide. We hope you will attend!
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Don't miss on July 29, 2007, Dr. Albert Robbins' show - The Environmental Healing Hour, main topic will be Fibromyalgia.
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Joining him as special guests will be Dr. Roland Staud, fibromyalgia researcher at the University of Florida, and author of the book Fibromyalgia for Dummies and Dr. Kenneth Friedman, Secretary, Chairman Public Policy, P.A.N.D.O.R.A. and former CFS Advisory Committee member.
"Listen live"
Sunday, July 29, 2007 5:00 to 6:00 pm
This is a radio show you will not want to miss!
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PANDORA JULY 2007 Newsletter
July 20, 2007 |
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Dear Friends,
 Welcome to our July 2007 newsletter. It is packed with solid information on our grass roots efforts as well as educational articles that will help you. Since the 8th IACFS conference and I hate to admit this publicly, I have had a tough time recouping from that special event. It is also a fact that the same has occurred with some of our most valuable volunteers including my CFS/FM twin- Rebecca Artman who is still dealing with a major CFS relapse, but I can assure you that it is not preventing her from continuing to assume her role as the sole patient advocate in the CFS Advisory Committee. Her professionalism and dedication comes across in everything she is involved.
Other valuable board members are just about emerging from CFS/FM "crash and burn" symptoms and they are Yvette Taylor, Connie Borschel and Bonnie Thornber. Other dedicated volunteers have had to pace themselves and are taking a summer break. I will be joining them soon.
We are lucky to have this extended "built-in" family. We are very supportive of each other and we are still in awe of what we all accomplished during the international event. We remain extremely grateful to each of our dedicated volunteers who so kindly and aptly assisted us then, in the present and will continue in the future. Without our dedicated volunteers we could not accomplish what we do. The amazing results of the 8th IACFS conference have been remarkable and will remain long lasting.
Summer is a good time to relax and to read. Here is the link to our to PANDORA's editorial Chronic Fatigue Syndrome Funding Should Be Increasedpublished on July 12 in the Sun-Sentinel newspaper, articles on Disability Issues by David Goetz and Jason Newfield, Humor by Yvette Taylor, Beauty Issues for CFS/Fibrobabes with an interview by Marla Schwartz with Robert Craig, a leading beauty expert, and special feature article from Dr. Martin Pall highlighting his latest book Explaining Unexplained Illnesses.
I also would like to personally recommend another book to add to your list of required summer reading - Fibromyalgia: The Complete Guide from Medical Experts and Patients, expertly written by Dr. Sharon Ostalecki, the founder of H.O.P.E.-Helping Our Pain and Exhaustion, a patient advocacy organization from Illinois.
In addition, a good audio book to listen is I Am America (And So Can You), by Stephen Colbert. It will have you laughing till you feel better (I prefer to say it in this way then saying "until it hurts"). If you are into scientific fiction, unusual love story and mystery then The Time Traveler's Wife written by Audrey Niffenegger was highly recommended to me and I heard about the book a while back on NPR. And of course all of these books including their audio versions can be purchased through P.A.N.D.O.R.A.'s book store or through IGive.com and you will be helping our cause.
I hope you enjoy your newsletter and your feedback is always appreciated. Enjoy your summer or the best of the season where you live!
In Good Health and In Beauty,
Marly C. Silverman
Marly C. Silverman
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 Chronic Fatigue Syndrome And Related Illnesses: An Overall Mechanism
by Martin L. Pall, Professor of Biochemic and Basic Medical Sciences, Washington State University
It has been the conventional wisdom that chronic fatigue syndrome is an unexplained illness and that even the symptoms are unexplained. Although several research groups have proposed that fibromyalgia and multiple chemical sensitivity and several other diseases/illnesses may share a common etiologic (causal) mechanism, the conventional wisdom has been that we don't understand what that mechanism is - indeed it is often stated that these illnesses are "baffling." In my recent book, "Explaining 'Unexplained Illnesses': Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, Gulf War Syndrome and Others," Haworth Press, I challenge all of this conventional wisdom and much more. Indeed, many have argued that we need a new disease paradigm to understand this group of illnesses, and by providing such a paradigm, I argue that this part of conventional wisdom is correct... Click here for complete article
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Robert Craig Is a Cut Above with His Robert Craig Signature Hair Line
by Marla Schwartz, Staff Writer
It takes an individual of great regard to help anyone who suffers from a chronic illness. When looking for assistance, one usually looks toward the medical profession, but when it comes to attempting to live life as its fullest, while enduring the daily grind of living with any particular type of a neuroendocrineimmune disorder, don't forget to take care of the outside as well as the inside. For support in this area, further narrowing down the playing field to one's head - don't forget about hair care!
Hair care is important to everyone! And Robert Craig is here to help. The 'Robert Craig Signature Haircare Line' is the result of years of research and client testing. Robert developed this line for his personal clientele and today his products are highly recommended by leading figures of national beauty and travel-press organizations... Click here for the complete article
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 Focus on Disability - Functional Capacity Testing
by Jason Newfield, Attorney at Law
There are several investigative tools used by insurers for disability claims, including IMEs (Independent Medical Examinations), FCEs (Functional Capacity Evaluations), Peer Reviews, Field Investigations, and Surveillance.
Although each of these investigative tools can detrimentally impact the continuity of benefits, in this article I focus on the problems with FCEs and upon strategies to employ when addressing an insurer's request that a claimant undergo such testing. Generally, an FCE is a series of tests of strength, flexibility, endurance, pain, cardiovascular fitness, materials handling (lifting ability), coordination, static posturing, repetitive movements, and other tests.
Unlike an IME, which is usually contractually required, an FCE is not generally contractually required. This test is utilized by insurers to test one's maximal effort, which is then used to extrapolate whether one can work full time on a sustained basis due to the ability to successfully perform a myriad of tests. Thus, there are numerous grounds upon which to refuse to attend an FCE, and both attorneys and claimants should be vigilant about asserting rights to refuse this test... Click here to read the complete article
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Pursuing a Social Security Disability Claim: Finding your way through the Legal Maze
by David Goetz, Attorney At Law
To determine if you qualify as a claimant for Social Security Disability benefits, you need to ask yourself the following questions:
(1) Do you have a severe medical condition?
(2) Have you paid into the Social Security system through taxes for 5 of the last 10 years? (3) If you have not worked 5 out of the last 10 years, are you a U.S. citizen or a green card holder?
(4) Will you be unable to work for a period of 12 consecutive months due to a physical and/or psychological impairment?
(5) If the claimant is a child, does he/she meet or equal the medical listing of impairments?
(6) Have your Social Security benefits recently been terminated or ceased by the Social Security Administration?
The Social Security Disability Act is designed to provide Americans with disabilities easier access to benefits. The reality of obtaining benefits, however, is sometimes daunting and overwhelming. For many who have become disabled, the quantity of paperwork, long lines at the social security offices, and constant delays make the process difficult...Click here to read the complete article
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Chickens, Fourth of July, and Hurricane Season
by Yvette Taylor, Senior Editor
I was at a Fourth of July party and found myself amidst 17 chickens and a rooster, who undoubtedly was one very happy male with such a large harem. Apparently, the chickens had somehow ended up in my friend's yard during Hurricane Wilma. She fed them and they are still there. It rained on the 4th and most of us were inside. This same friend does not like air conditioning, so the front and back doors were open, creating a wonderful opportunity for the chickens to have free reign. There were two results of this unusual situation for me. One, I did not eat the barbecued chicken, and two, after hearing how the chickens arrived, I remembered that I was planning to write a bit about hurricane season for those of us with fibro.
Click here to download the entire article
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GET INFORMED! CLICK ON THE LINKS BELOW |
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A not for profit 501 (c) (3) charitable organization
Business Office: c/o Vina & Company, 255 Alhambra Circle, Suite 715
Coral Gables, Florida 33134
305-441-0070 8:00AM-5:00PM
A COPY OF THE OFFICIAL REGISTRATION OF PANDORA FL NUMBER CH 18245 AND FINANCIAL INFORMATION MAY BE OBTAINED FROM THE DIVISION OF CONSUMER SERVICES BY CALLING TOLL-FREE (800-435-7352) WITHIN THE STATE. REGISTRATION DOES NOT IMPLY ENDORSEMENT, APPROVAL OR RECOMMENDATION BY THE STATE.
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About Us 
P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, 255 Alhambra Circle, Suite 715, Coral Gables, Florida, 33134. Volunteer Help Line: 954-783-6771 - Fax: 954-783-1098 - Business Office: 305-440-1591 - We are a nonprofit 501 c 3 charitable organization, headquartered in Florida.
ONE STRONG VOICE FOR MANY ©!
Built on Hope
Strong on Advocacy
Finding a Cure through Research
Newsletter volunteer staff:
Marly Silverman
Dr. Kenneth Friedman, Connie Borshel and Bonnie Thornber
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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 - Target, Macy's, Lane's End, Office Depot, Barnes & Nobles, many with free shipping specials- a portion of each online purchase is donated to P.A.N.D.O.R.A. Your stores, OUR cause, their money.
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