Vol. II, Issue #17
Bergen CFS Support Group Newsletter
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.
Your name (and any title you may wish to add)
Other letters addressed to:
20/20 ABC NEWS
60 MINUTES, CBS NEWS
Senior Supervising Producer
Other suggested recipients:
Dr. Phil Show
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.
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.
MARISSA NEWELL’S BAT MITZVAH PROJECT
SPONSORED BY V.F.W. POST 2639
V.F.W. POST 2639
All proceeds go to
NJ CHRONIC FATIGUE SYNDROME ASSOCIATION
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
fighting for a cure.
Thought for the Month
“Learn to build rainbows with clouds.” Maya Angelou
Special Announcement #2
Is Pleased To Announce
1st Walk for Awareness
(On Boardwalk at
2 Mile Walk
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
scheduled meeting will be on May
15th from at
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
Nurse Practitioner and Family Counselor
Answers and discussions for family and friends
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…
Call Anne Gilmartin 201-244-5188 or email firstname.lastname@example.org
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 email@example.com or firstname.lastname@example.org. Subscription problems: Nancy Visocki at email@example.com. Editor: Pat LaRosa at firstname.lastname@example.org.