Dear P.A.N.D.O.R.A. Members & Friends,Our overall community is buzzing with excitement, guarded optimism and resolve brought by the latest research findings that were published at Science, a well-respected scientific U.S. publication. According to Dr. Monica Moore and Annette Whittemore, President of the Whittemore Peterson Institute ..."These important findings answer the question that has plagued our community of suffering...CFS-ME is not a psychological illness." In my opinion, CFS-ME is real, brutal and the medical community, specially the CDC can no longer ignore the science. We are getting ready for the CFS Advisory Committee Meeting (Agenda) on October 29-30, 2009. I will be representing PANDORA in the capacity of the Founder but more importantly as a patient too. I will be speaking at 12:15 pm on October 29. Laurel Bertrand's Video Testimony, the one we are featuring in our Youtube.com page, will be presented at 9:15 am on October 30, 2009. ( If you haven't seen it yet click here, rate the video, and share with your family and friends). Help us go viral (punt intended!). There is too much at a stake for us patient advocates to drop the ball and not insist on CDC and other health government agencies to pursue extensive research on the new XMRV virus findings. There is nothing to lose and much to gain! It is time for change on the type of resolve that our government health agencies have demonstrated for the past 27 years towards CFS-ME research. IT IS TIME FOR CHANGE! I am elated to see, read and speak with advocates across the country: From "giving until it hurts" ( John Herd on his blog at mecfscommunity.com) to Cort Johnson at M.A.D. (Making a Difference about ME-CFS), to Denise, a mother of two CFS-ME children who will attend this meeting with me; to Mary Schweitzer who gave her public testimony allotted time to Dr. Dharam Ablashi; to Laurel Bertrand whose amazing video featured on our youtube.com page has now been seen by 1,420 viewers and has been rated 5 star by 22 viewers and lastly to the 13 amazing individuals we have nominated for the next round of nominations for the CFSAC committee. We are fired up! Ready to go! Our own efforts for the
The NeuroEndocrineImmune (NEI) Center™ are yielding great results. The New Jersey Assembly passed a standing resolution - a moral and political victory for every CFS-ME patient in the U.S.- and the New Jersey Senate standing resolution is now going to the Health Committee & Senior Services for approval as well. Enjoy this special newsletter. Remain courageous and be certain that our resolve to find solutions for our overall community remain stronger as ever. You and I together...We are: 1 Voice, 1 Community, 1 Cause. In Good Health and In Beauty, Marly "Marla" C. Slverman Editor |
| Scientists from the Whittemore Peterson Institute find XMRV Retrovirus in CFS Patients. Nancy Klimas Lecture on the XMVR Retrovirus, November 7, 2009, sponsored by P.A.N.D.O.R.A., at the University of Miami. |
The magazine Science has published an article in which researchers report finding a retrovirus, called XMRV, in the blood of two-thirds of 101 patients with chronic fatigue syndrome. This virus is also found in the blood of men with severe prostate cancer. This DOES NOT mean that the virus is the cause of CFS. But it answers ONCE AND FOR ALL the question that CFS could be only a psychological or psychiatric illness. The bottom line is that CFS is brutal, disabling, and life altering illness. CFS symptoms are serious and warrant aggressive scientific research.
The researchers referred to the possibility that this was a "passenger virus" that catches a ride in patients whose immune systems are weakened by chronic fatigue. These investigators further found that almost 4% of healthy individuals also carried the virus.CFS-ME- FM and cancer scientific researchers are excited about this discovery. Further study and financial investment are needed to connect the dots and to answer the amazing questions that this research findings are bringing to light. Back in 1991, Dr. Elaine de Freitas, Paul Cheney, and David Bell had also isolated a retrovirus on CFS patients. However the CDC at that time was not able to reproduce their findings.
PANDORA has communicated to the CDC that they cannot afford NOT to invest time and resources in duplicating these findings. The CDC 5 year-plan needs to include these findings and pursue research on the XMRV virus on CFS (as well as FM patients). IT IS TIME FOR CHANGE! No more excuses from the CDC regarding.
Here in Florida we are sponsoring a lecture by renowned CFS-ME-GWS researcher Nancy Klimas, MD. If you live in the S. Florida area covering Broward, Miami-Dade, Monroe and Palm Beach counties this is your opportunity to attend a 2-hour meeting with someone who will be able to answer your questions and elaborate on such an important finding for the patient and research communities.
The New XMRV Virus and What it Means to Chronic Fatigue Syndrome Patients
Date/Time: Saturday, November 7, 2009, 2-4pm
Location: University of Miami Miller School of Medicine, Rosenstiel Medical Science Building, 1600 NW 10th Avenue, 3rd floor auditorium, Miami, Florida.
Sponsored: By P.A.N.D.O.R.A. - Patient Alliance for Neuroendocrineimmune Disorders Organization for Research and Advocacy Inc, a 501 c 3 patient advocacy organization headquartered in Coral Gables, Florida, in partnership with CFSKnowledgecenter.com and the local empowerment/support groups in South Florida.
Cost: Free, space is limited
RSVP: The auditorium holds 150 and to ensure refreshments and a "goodies bag" is held for you, RSVP today to Elizabeth Goldberg at egoldberg@med.miami.edu or 305-243-3492.
Click here for the flyer on our home page right side upper page.
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CFS Advisory Committee Meeting to be held on October 29-30, 2009, Dept of Health and Human Services, Washington, DC.
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The upcoming CFS Advisory Committee meeting is on for October 29-20, 2009 at the Department of Health and Human Services (DHHS) in Washington, DC. The patient advocacy community, physicians and researchers are gearing up for this meeting and for the expertise as well as patient advocates testimony on those two days. Marly Silverman, the founder of PANDORA, will attend the meeting and she will provide her comments at 12:15 pm on October 29. Laurel Bertrand video testimony is scheduled at 9:15 am on October 30, 2009. The numbers of viewers for this video have increased considerably and now stands at 1,426! Make sure you click on the video,rate it, and then share it with others. We are bringing small advocacy cards to display during the meeting (hopefully they will allow us to do so) and we hope that the room will be packed. A MAC lap top with an air card will be available, so we can actually video tape while there and upload to our youtube.com page.Advocates from all over the country are making plans to attend this important meeting. Click here for the agenda. There are 22-24 public testimonies and presentations, including Drs. Dan Petterson, David Bell, Kenneth Friedman, Dharam Ablashi and many more. If you haven't done so, please write a short e-mail letter and share your story with Dr Wanda Jones and members of the committee. (CFSAC@hhs.gov) and cc Marly Silverman. PANDORA has asked CFSAC staff to enter every e-mail sent to them on record, and post on their web site as well. Once your e-mail-letter is received they usually print it and place on a table for everyone to see it. If all possible, I will bring copy of your letter or e-mail to them, and will mail to you as proof that it was disseminated during the meeting, if you communicate with me. IT IS TIME FOR CHANGE! 1 Voice, 1 Community, 1 Cause! |
| FLU SHOT OR NOT? |
By Yvette Taylor
There is no easy answer to this very serious question. If you have ever had the "real" flu, with 105 fever, chills, aches, and pure misery for 2 weeks, you are probably more likely to get the regular shot. I have had the flu twice. The first time was in 1969, when I was out shopping for holiday presents. I felt fine when we got to the mall, but after a bit of shopping, I felt sick and passed out in the store!
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| PANDORA'S DAY OF ACTION - OCTOBER 27-28 & NOV 2-3 - AMERICA'S GIVING CHALLENGE ON FACEBOOK. |
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The NeuroEndocrineImmune (NEI ) Center™
A Special Project in partnership with the Lanford Foundation-Lifelyme, Inc is our featured cause on Facebook for the America's Giving Challenge.
It's easy - Here's what you have to do: On October 27th from 3pm to October 30th, 2:50PM donate to our CAUSE PAGE - Click here and make a donation of only $10. But it must be on those specific days, at those specific hours. Of course, you can donate more but it must be in increments of $10 between now and the last day of the challenge which is November 6, 2009. If you donate $10 on October 27th & you want to donate more, just wait until the next day at the same time & donate again!
The next PANDORA's Days of Action on the America's Giving Challenge is from November 2, 2009 from 3:00 pm to November 3, 2009 at 2:50pm. Follow the same instructions as above.
MISSION STATEMENT
SCIENCE - INNOVATION - CHRONIC ILLNESS - SOLUTIONS
The NeuroEndocrineImmune (NEI) Center™ is a special patient-driven community project of P.A.N.D.O.R.A, a 501 c 3, non-profit foundation registered in the state of New Jersey, in partnership with the Lanford Foundation-Lifelyme, Inc. It is the first research center to incorporate scientific and clinical research, quality in patient care, and social services, all in one state-of-the art facility. The establishment of The NEI Center™ is based on the philosophy that the similarities in symptoms of neuroendocrineimmune disorders (NEIDs) are the human body's response to similarities in the underlying pathophysiologies that cause these disorders. The cornerstone of the NEI Center's mission is that discoveries and advances made in any one of the NEIDs, such as chronic fatigue syndrome (CFS), myalgic encephalomyelitis (ME), fibromyalgia (FM), Gulf War syndrome (GWS), Gulf War illness (GWI), multiple chemical sensitivity (MCS), environmental illness (EI), Lyme disease (LD), Alzheimer's, and autism, will be applicable and beneficial to other NEIDs, thereby bringing us closer to a cure for these disorders.
The NEI Center™ Team
Acknowleodgements:
We are extremely appreciative of the support from the New Jersey CFS Association for the establishment of the NEI Center in New Jersey. We thank the legislators at the New Jersey State Assembly and more specifically Deputy Speaker Assemblyman Upendra Chivukula, Vice-Chair Health Committee Assemblywoman Connie Wagner and Assemblyman Herb Connaway. The standing resolution AR 202 passed unanimously in the New Jersey Assembly. We are also grateful to New Jersey Senators Kib Bateman and Loretta Weinberger for co-sponsoring the same resolution in the senate side. The resolution (SR133) is now marked up for committee reviewing. We will let you know when is passed.
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Green Solutions-Special Promotion Event Honorable Al Gore comes to South Florida- PANDORA members get a 10% Discount on tickets purchased.
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Former Vice President Al Gore is coming to Boca Raton, Florida on November 14th. He'll speak on the climate crisis and the solutions to deal with it. B2B Global with the Centre for the Arts in Boca is proud to welcome Mr. Gore and expect the attendance to be over 3,000 people.  The event will be held: Mizner Amphitheater, Boca Raton, FloridaSaturday, November 14, 2009 Time: from 5:45PM to 7:15PM, followed by a brief Q & A session. Cost: Tickets from $41.10 to $159 minus your 10%
discount. You must use PANDORA's special code
PAND15 in the box requested, right before you make your selection. Click here to purchase ticketsAl Gore has championed environmental initiatives and legislation for decades.In 2007, the former Presidential candidate received the Nobel Peace Prize in Oslo, Norway, for his breakthrough documentary "An Inconvenient Truth." Mr. Gore is recognized worldwide as one of the planet's most influential voices on climate change. His new book, Our Choice, focusing on outlining the achievable solutions to deal with the climate crisis, has been released. |
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P.A.N.D.O.R.A.' SOCIAL & ADVOCACY NETWORKS
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| P.A.N.D.O.R.A.'s Mission |
To be one strong voice for manyŠ . . .
Creating and Raising Community Awareness
Advocating for Quality of Life Issues
Providing Support and Educational Resources
Establishing Partnerships in our worldwide community
Supporting Scientific Research
Encouraging Empowerment groups
Organizing Educational Medical & Patient Conferences
These goals will assist patients with neuroendocrineimmune disorders and their families in leading productive and fulfilling lives.
Built on Hope
Strong on Advocacy
Finding a Cure through Research
1 Voice - 1 Community - 1 Cause
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