Bergen
CFS Support Group Newsletter
April 2005
Vol.
II, Issue #17
Bergen
CFS Support Group Newsletter
Meeting
Report
The meeting
held on Sunday April 17th.welcomed two new people. We hope they will choose to join us at
subsequent meetings. It appears that
Judy Machacek’s effort to spread the word is working.
The Million Letter Campaign for CFS Awareness Day on May 15th
was again encouraged. Those in attendance
were provided with a sample letter to help them in composing their own
story. That sample is included in this
newsletter in hopes you will join the effort. All
letters are to be mailed on May 1st. This
is a Sunday and if mailing it on this day is not possible, please send
the letters on either Saturday April 30th or Monday May 2nd. If for some reason you do not get them out on
time, please send them anyway. The hope is
that they will all arrive before May 15th.
Our thanks go to Acting Governor Codey for the attached
Proclamation making May “CFS Awareness Month” in the state of New
Kudos also
to Denise for representing us at the Bergen Community College Health
Fair. Great job!
CFS
Awareness Day
123 Any Street
Your town, NJ zip
Month day year
The First Lady, White House
Dear Mrs. Bush
I am a person with Chronic Fatigue Syndrome (CFS). I first became ill in [year]. It took [how long] to get a diagnosis after seeing [number] doctors. It was hard to convince people just how sick I was.
[Describe your symptoms] There are many symptoms for people with CFS. The ones I experience are [profound fatigue, post exercise exhaustion, headaches, sore throat, mouth sores, dizziness, orthostatic hypotension, word mix-up, night sweats, cold hands and feet, multiple chemical sensitivity, light-headedness, brain fog, palpitations, muscle pain, sleep problems – whatever you experience].
Before I became ill, I worked as a [describe]. My lifestyle was [adequate, comfortable-describe]. My career was in progress and I planned to [move up, expand, -explain]. Since becoming ill, my income has changed [how]. My finances are now [what – half, very small, gone] compared to beforehand. I now rely on …to make ends meet. (If you have applied for disability explain if you were accepted or rejected and what you went through in the process).
I am asking you to use your influence to help us gain recognition for this disease. Support research that will help find a cause and a cure. Encourage social and medical understand. We need acceptance. No future generation should have to experience the rejection and neglect that CFS patients often encounter.
Sincerely,
Your name (and any title you may wish to add)
Other letters addressed to:
Story Editor
20/20 ABC NEWS
FOX NEWS
Story Editor
60 MINUTES, CBS NEWS
Senior Supervising Producer
MONTEL WILLIAMS
Other suggested recipients:
Dr. Phil Show
Barbara Walters
It is important that the letters be sent to the first 5 people. If you want to send more letters, please send them to your Congress persons. They can be found at the link:
http://www.arthritis.org/advocacy/priorities/priorities_contact.asp Near the top on the right, enter your zip code as directed just below “Write to Congress”. Click on “Go”. The next screen will display the President and your Congress persons. You will be given the option of email or other info.-- where a physical address will be available. Actual paper letters are the preferred method for this campaign.
Special
Announcement
Marissa is a
young woman with CFS. This auction is her
Bat Mitzvah project and at
the request of the NJCFSA we are sharing the announcement with you.
GIFT AUCTION
MARISSA
NEWELL’S BAT MITZVAH PROJECT
SPONSORED
BY V.F.W. POST 2639
Location:
V.F.W.
POST 2639
Doors
Open:
Drawing:
Admission: $7.00
*ADULTS ONLY*
All
proceeds go to
NJ
CHRONIC FATIGUE SYNDROME ASSOCIATION
Advance
Tickets Available
Admission includes 1 sheet
of regular basket tickets, coffee, tea and cookies.
Additional tickets and larger basket tickets available at an
additional cost.
For
More Info:
Fayth or Marissa Newell
732-775-9326
fighting for
a cure.
Thought for
the Month
“Learn
to build rainbows with clouds.” Maya
Angelou
Special
Announcement #2
NJCFSA Walk-a-Thon
Is Pleased To Announce
1st Walk for Awareness
Location:
(On Boardwalk at
2 Mile Walk
Registration
Walk Starts
Rain or Shine
Registration Forms are
being mailed to every NJCFSA Member
All proceeds go to the
NJCFSA Research and Scholarship Funds
Our walk is being
organized by Joseph and Patricia Engrassia in honor of Patricia’s
sister NJCFSA member Linda Czarnik
For More information
Contact Joseph at the following:
Special Thanks to our
Sponsor
Pine
Next Meeting
The next
scheduled meeting will be on May
15th from
AN INVITATION
What is Chronic Fatigue
Syndrome
And
why are you too sick to do things with me (or for me) even though…
“You don’t look sick”!!!???
Please
join us for a special afternoon discussion with
Lois Weissman
Nurse Practitioner and
Family Counselor
Answers
and discussions for family and friends
Old
Sponsored
by the
Are
you confused, frustrated, or angry about living with someone who has a
chronic illness? Learn how to communicate
with family members and to improve coping skills.
Please
join us.
Everyone
is welcome. We encourage you to bring family and friends.
Share
your experiences…
Learn
from others…
Questions:
Call
Anne Gilmartin 201-244-5188 or email annioelaurie617@yahoo.com
Other
resources :
www.NJCFSA.org and www.CFIDS.org
CFS is
a debilitating and complex syndrome that is characterized by profound
fatigue, which is not improved by rest. Other
symptoms include cognitive difficulties, impaired sleep, flu-like
symptoms, joint and muscle pain, and gastrointestinal symptoms.
This
newsletter is intended for CFS patients in the area of this support
group. The purpose is to share information
and support. If you have questions about
meetings please contact Group Leader Anne at annielaurie2@optonline.net or annielaurie617@yahoo.com. Subscription
problems: Nancy Visocki at nvisocki@verizon.net. Editor: Pat LaRosa at pat@larosas.net.