chronic fatigue syndrome, fibromyalgia, fms, cfs, empowerment groups, cfids

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Newsletter December 27, 2007

P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy
P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy Newsletter
DECEMBER / 2007

In This Issue
Don't Let Chronic Pain Ruin Your Holiday Season
Sleep O Elusive Sleep
IMPORTANT ANNOUNCEMENTS FROM P.A.N.D.O.R.A
Quick Links
Our Sponsors
Pro-Health Logo
Join Our Mailing List
P.A.N.D.O.RA.
Recycling Fund Raiser is getting bigger through the support from the S. Florida business  community.

Click here for the latest press release from CIGC - Center for
Group and Individual Counseling, PA - (Tools for Life)

PANDORA;S RECYCLING FUND RAISER

and Save the Environment by donating your cell phones, ink cartridges and ink toners to P.A.N.D.O.R.A.!

 
If you live in Pennsylvania and you have fibromyalgia (FM), please contact P.A.N.D.O.R.A.

We need you! 

A pharmaceutical
company wants to
create awareness
and promote
educational
efforts for FM
in the state of Pennsylvania and we need your caring involvement. 

Tools for advocacy, coping tips and much more will be
shared with anyone
who wants to make a difference.

The power of ONE can make a huge
impact in the
lives of individuals
with fibromyalgia.
Contact P.A.N.D.O.R.A 
Lend us a hand!

Lend a Hand in Pennsylvania  
Please join us and support the
I NEED A HERO Project. The project calls for the creation of
of a congressinal caucus (or similar initiativie) for CFS-ME, FM and related illnesses. We need to put strong pressure on Congress and on our government health agencies that supports initiatives & substantive  funding for for CFS-ME and related illnesses.
 

Julio & Sandy Bermeo - Capitol Hill









WE CAN'T DO IT ALONE!

We need your
involvement. 
P.A.N.D.O.R.A.-  Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc.  is a non profit 501 c 3 charitable organization dedicated to ensure individuals with CFS-ME, FM, GWI, MCS and related illnesses will fare better in their communities by succesffully addressing the quality of life issues that affect individuals with chronic illlnesses.

Built on Hope

Strong on Advocacy

Finding a Cure

Through Research
Greetings!
 
The end of the year is rapidly approaching and we would like to share with you one very important accomplishment of P.A.N.D.O.R.A. during 2007. 
 
As of Dec. 24, 2007 our web site traffic registered 65,885 visitors! We believe it has plenty to do with the quality of our newsletters; our advocacy work; our educational outreach programs such as Advocates Extraordinaire; our first International Advocacy Video Contest on YouTube.com; as well as our sponsoring of the 8th IACFS Conference in January 2007 and the results of our grass roots advocacy efforts that included lobbying in Capitol Hill.

Through our hard working in Florida and our  special partnerships with other national organizations, we have reached national and international audiences within our worldwide community. P.A.N.D.O.R.A. continues to be embraced by patients, caregivers, and advocates of all ages, who give of their time, kindly, warmly and generously. 
 
Obviously, we could not reach such a milestone without the dedication of our board of directors, our golden volunteers and of our individual and corporate benefactors who have generously donated to our cause.
 
Stay tuned for our complete year-end report at our next newsletter. For now we thought you would like to read the article written by Karen Sacks, one of our board members who discusses the tools that individuals with CFS-ME/FM & related illnesses can use to ensure they enjoy the holidays by managing the un-welcome stress that always comes with such celebrations.
 
The other, written by Yvette Taylor's, another caring board member, gives a humored view of going through a sleep study. ( I had a hearty laugh while reading it, as I recently had one too.) I am sure some of our members will identify with her experiences and appreciate her amusing wit. 
 
We hope that our members who celebrate Hannukah and Christmas had a meaningful joyful occasion during this holiday season.
 
To our members who celebrate Kwanzaa this week, we wish you a meaningful one as well.

And for each one of our members, our board members, volunteers, benefactors and supporters of our cause and mission, we wish you a Happy and Healthy New Year!

See you next year!
 
Marly Silverman
Publisher
 
Don't Let Chronic Pain Ruin Your Holiday Season
by Karen D. Sacks, M.S., L.C. P.C., L.M.H.C.,
Individual, Group and Couples Therapy

 
Karen Sacks

In the best of situations, even without pain, many people struggle with stress during the holidays, whether it be financial, emotional, dealing with family, and/or time constraints-not to mention finding the perfect gifts. Combine that stress with the difficulties that are caused by fibromyalgia, CFS-ME, and chronic pain disorders and the holiday season can be very challenging, and you need to use your energy wisely.

As a therapist for over 28 years and a fellow chronic pain sufferer (FMS and migraines), I've created a list of tools that can help you get through this busy time.

Here are some specific tools and tips to make things easier during this season:

 Challenge: The holiday dinner is at your house this year and you're feeling overwhelmed!

Sleep O Elusive Sleep
by Yvette Taylor
 
Yvette Taylor
O Sleep! O Gentle Sleep!
Nature's soft nurse! How Have I frighted thee!
That thou no more wilt weigh my eyelids down,
And steep my senses into forgetfulness?
William Shakespeare, King Henry, in Henry IV, Part 2, Act 3, sc 1, I.5-8.

You finally get your diagnosis, finally learn why you hurt all over, why-no matter how hard you try-there are times that you absolutely have to lie down, too exhausted to do anything. You have fibromyalgia. "What is fibromyalgia?" I asked, while being scraped off the ceiling after what seemed to me a sadistic assault on various parts of my body. I was handed a brochure to read and told that the doctor would come back to answer my questions to the best of his ability.

Click here to read the complete article.

IMPORTANT ANNOUNCEMENTS FROM P.A.N.D.O.R.A.!
New Dates and Time for the Empowerment Group at Temple Sholom
May 23, 2008 will be P.A.N.D.O.R.A.'s First Golf Tournament Benefit 
Sign up for the Lyme Disease Conference sponsored by the Lanford Foundation and the University of Florida And much more!


Announcer
The new day and times for the
CFS-ME/FM Empowerment Group
Meetings at Temple Sholom are now every first Tuesday of the month starting this January 2008.
Click here for the 2008 calendar.

Mark on your calendars May 23, 2008 will be our very first golf tournament benefit! We will need volunteers and sponsors to ensure this major fund raiser will be a huge success.

Dr. Nancy Klimas and Dr. Kenneth Friedman, two of our board members will be featured guest speakers at the Lanford Foundation & the University of Florida Lyme disease one day conference - Similarities and Paradoxes in Chronic Illnesses, to be held on Saturday, January 19, 2008, in St. Petersburg, Florida at the Renassaince Vinoy Resort. The conference will provide CME for physicians, psychologists, nurse practitioners, nurses, and health care providers.

Our ongoing recycling fund raising is getting additonal support from members of the business community. The Center for Individual and Group Conseling, located in Boca Raton, Florida has joined as one of our drop off locations and so has HairColorXperts in its locatins in Lighthouse Point and Boca Raton, Florida. Click here for P.A.N.D.O.R.A.'s flyer with the complete drop off locations.

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.

For more information on these special announcements and much more please go to our web site at www.pandoranet.info


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