A Non-Profit Organization
501c3
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Newsletter June 5, 2007
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We want to make sure our members are aware of our Advocate Extraordinaire Phyllis Friedman, pictured above, who is the beautiful smile behind our coping and empowerment column Lean on Me .
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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.
The type of questions you can ask Phyllis are related to coping and empowerment - ranging from how to deal with your daily environment, physician and mental health referrals, social agencies, family relationships, and much more. Her column complements well the ASK PANDORA'S DOC column headlined by Dr. Lina Garcia who will answer your medical questions en Espanol tambien (in Spanish).
DISCLAIMER
These columns are in no way, shape or form to be construed as a replacement for your mental health counselor, physician treatment or to be construed as a medical advice. Always consult your treating physician and use common sense and good judgment before initiating use of supplements, therapies, vitamins, herbs or engaging in any physical activity. Always consult a physician if symptoms persist or intensify. The Ask PANDORA's DOC column is provided as general medical information only. P.A.N.D.O.R.A. does not provide an endorsement of any particular medical professional, parties, businesses or services discussed in this column.
The Lean on ME column is is an outreach community service that encourages individuals to share their struggles without judgment in order to facilitate knowledge (empowerment) that would enhance personal coping mechanisms and contribute to overall wellness!
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Join your friends at the upcoming group meetings on June 2007:
CHRONIC FATIGUE SYNDROME & FIBROMYALGIA EMPOWERMENT GROUP - TEMPLE SHOLOM. POMPANO BEACH, FLORIDA
WHEN: Every First Wednesday of the month except when a holiday hits, then the following Wednesday.
PLACE: Temple Sholom - 132 S.E. 11th Ave, Pompano Beach, Florida
DIRECTIONS: From I-95 to Atlantic Blvd, go East until you reach 11th Avenue (short ride and there is a traffic light, with a Walgreen's on your left and an auto store on your right) make a right on to 11th Avenue. Temple Sholom is on your left, on 1st street, go around the southeast side of the building, and make a left into the parking lot. Meetings are held inside the chapel.
TIME: If this is your first visit to our group, please come at 2:00 pm for familiarization and a short orientation. For established members meeting will begin promptly at 2:30 pm.
Pembroke Pines Group / Memorial Hospital West
Fibromyalgia/Chronic Fatigue Syndrome Empowerment Group at Memorial Hospital West.
When: Every First Thursday of the month (unless a holiday conflicts)
Place: Fitness and Rehab Center, Conference Room, Memorial Hospital West, 703 N. Flamingo Road, Pembroke Pines, FL 33028
The hospital campus is behind the Pembroke Lakes Mall. The main entrance into the hospital campus is on Flamingo Road near the corner of Pines Blvd. Follow the signs to the Fitness and Rehab Center.
Facilitators: Steve Kruger - E-mail: skruger24@aol.com and Antonette Tolentino, RPT at 954-430-6880 X
Connie Borschel, one our valuable board members also provides support for this group. Her contact is cborschel@pandoranet.info
Time: 2:30 p.m.-4:30 p.m.
2:30-3:30 pm - Scheduled Topic
3:30-4:30 pm - Open Discussion
First Time attendees please arrive at 2:15 pm
Upcoming Meeting:
Date: June 7, 2007
Topic: TBA
Speaker: TBA
Click here for the complete 2007 Calendar for the empowerment group at Memorial Hospital West.
Miami CFIDS Support Group
They also have an online group through yahoo.com, please contact Barbara for complete information and or check our web site in the next few days when the complete information will be there. (Unfortunately the current link information we have is not correct, but we will fix that soon.).
Central FL CFS/FM/MCS Support Cybergroup.
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 Cybergroup. 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.
Moderator - Leslie Pallone
If you click on health.dir.groups.yahoo.com, then type in chronic fatigue syndrome, you will see that there are 303 CFS/FM/GWS/MCS and related illnesses groups in Yahoo. It is a sign that nationwide there is much more awareness for CFS, FM, GWS and MCS. Not every group listed is a support group, some are intended to promote products, and maybe controversial treatments. A few we found were social groups promoting dating among members of the community. You will have to do some research to find out which ones could be suitable to your personal needs.
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Support The Florida Neuroendocrineimmune Institute (FNI) appropriations request with Florida Senators Mel Martinez and Bill Nelson. (Formerly known as the Florida Neuroendocrineimmune Center of Excellence)
P.A.N.D.O.R.A. filed once again a civilian appropriation request with the offices of U.S. Senators Mel Martinez and Bill Nelson (individually) for the Florida Neuroendocrineimmune Institute. In the House side we filed an appropriations request with Rep. Ileana Ros-Lehtinen and we ask for support of Reps. Robert Wexler and Ron Klein. The link below will take you to the original petition but it is ok to use last year's form, as they are aware that the name has been changed to reflect current funding outlook. Click here to ACT ON THE 2006/2007 ACTION ALERT!
Click here to read P.A.N.D.O.R.A.'s letter dated February 10, 2007 to DHHS to the attention of Secretary Leavitt and Dr. John Agwunobi, Assistant Secretary of Health outlining our overall concerns. We ask you that you write to your congressmen and include a copy of this letter as well. The points outlined on our letter are of great concern to P.A.N.D.O.R.A. and to our community.
A cure for CFS will never be found if funding is not directed to research that is urgently needed.
Background Information:
The Florida Neuroendocrineimmune Center of Excellence would effectively utilize state of the art knowledge concerning the diagnosis, clinical management, treatment, and clinical research of persons with Chronic Fatigue Syndrome (CFS) and related illnesses. The establishment of five (5) centers of excellence in the United States was the number one recommendation from the Chronic Fatigue Syndrome Advisory Committee (CFSAC), in their letter dated August 23, 2004 to Secretary of Health Michael Leavitt. The CFSAC is a committee chartered by Congress to recommend and shape national policy for CFS.
Our community knows fully well that there is a dire need in Florida for physicians who are trained to treat chronic fatigue syndrome and other neuroendocrineimmune disorders. Millions of Americans who have chronic fatigue syndrome (cfs) and fibromyalgia (fm) are in a healthcare crisis, with no qualified access to physicians for appropriate treatment. The situation is highly critical for the 240,000 Floridians suffering with CFS; there is only one CFS specialist in the state of Florida, and it takes two to three years to get an appointment. This scenario is commonly repeated in all 50 states. Fibromyalgia patients are in the same situation, especially in rural areas.
Among the neuroendocrineimmune disorders, CFS has experienced the most neglect. It has been underfunded and ignored. Fibromyalgia follows right behind it. The Florida Neuroendocrineimmune Institute ("center of excellence") would considerably improve qualify of life for CFS patients, thus enhancing potential and early recovery from CFS and other neuroendocrineimmune disorders.
It is important that Senators Nelson and Martinez are aware of the substantive and significant impact a Florida Neuroendocrineimmune Institute (formerly "Center of Excellence") will have in our state and what it means for 240,000 Floridians (according to the latest CDC figures of 4 million Americans estimated to be suffering with CFS) and to an estimated 17 million Americans suffering with neuroendocrineimmune disorders including fibromyalgia, Gulf War syndrome, multiple chemical sensitivities, and related illnesses. Too many lives have been lost to the desperation, abandonment, and trivialization that neuroendocrineimmune disorders receive by many in the medical community; and from employers and individuals who are not aware of the financial, physical and emotional impact these illnesses bring to persons and families in Florida and beyond.
Don't delay your involvement any longer. The time is now to get it moving through the political process. Your involvement can make a huge difference, but you must act now and ask your family members, friends, co-workers and business associates to contact their congressional representatives too. |
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- Is the nationwide campaign for a Congressional Caucus for CFS-ME/, FM, GWS, and MCS (neuroendocrineimmune disorders and related illnesses) from P.A.N.D.O.R.A.
Our May 2007 trip to Washington, DC results in a great opportunity for the establishment of a Congressional Caucus for CFS-ME, FM, GWS, and MCS (neuroendocrineimmune disorders and related illnesses). We approached several Florida representatives and asked them to step up to the plate and "become our heroes". We need ONE House Representative from the democratic party and ONE House Representative from the Republican party - HEROES to fight on our behalf to initiate a congressional caucus that will generate attention of the plight of Neuroendocrineimmune disorders patients across this great nation.
I am often told that politicians and the government do not care about our community. It might well be a correct assumption. But, I guarantee you that they will not become our voice, unless we tell them - over and over - how much we need their help. I guarantee you that they will not get our attention and will legislate on behalf of our community, unless we UNITE and gather our resources toward a common cause.
P.A.N.D.O.R.A. hopes to develop a network with all of the CFS-ME/FM/GWS/MCS organizations -large and small- as well as support groups across the fifty states to rally behind this effort titled - I NEED A HERO - campaign for a congressional caucus for CFS-ME, FM, GWS, MCS. This is not a project that belongs only to P.A.N.D.O.R.A., it belongs to every other stake holder organization who supports the neuroendocrineimmune disorders community and their supporters.
Send us an e-mail to contact@pandoranet.info and list your skills of any type - computer, graphics, writing, contacting in the media, corporate sponsorship, personal connection to local, county, state and federal politicians, etc. We will create teams that will work on specific tasks depending on their ability and desire to participate.
You don't have to be in Florida to be involved. This is a nationwide opportunity opportunity to take charge of your future - to ensure we have access to social services as our community ages, to ensure disability systems are in place that are knowledgeable of our condition, and to ensure we have access to treating physicians who are knowledgeable of medical protocols and latest research on neuroendocrineimmune disorders.
P.A.N.D.O.R.A. unfortunately does not have the current answers for a cure for CFS/FM and related illnesses, but we can fight together for the quality of life we all deserve and we will use our level of influence and social network to get this accomplished.
We are sending this information to you before we release it to the general public. Please forward it too.
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P.A.N.D.O.R.A.- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc., a non profit 501 c 3 organization.
Built on Hope
Strong on Advocacy
Finding a Cure through Research
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