April 2005

 Vol. II, Issue #17

CFS Blue Ribbon          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 Jersey.

Kudos also to Denise for representing us at the Bergen Community College Health Fair.  Great job!

CFS Awareness Day    

May 12, 2005 is annual CFS/FM Awareness Day.  We would like to remind you about the Million Letter Campaign.  Here is a sample letter for those who need help composing theirs.

 

123 Any Street

Your town, NJ zip

Month day year

 

The First Lady, White House

1600 Pennsylvania Avenue, NW

Washington, DC 20500

 

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

147 Columbus Avenue, 10th Floor

New York, NY 10023

 

FOX NEWS

5151 Wisconsin Avenue, NW

Washington, DC 20016

 

Story Editor

60 MINUTES, CBS NEWS

524 West 57th Street

New York, NY 10019

 

Senior Supervising Producer

MONTEL WILLIAMS

433 West 53rd Street

New York, NY 10019

 

Other suggested recipients:

Dr. Phil Show

5482 Wilshire Blvd. #1902

Los Angeles, CA 90036

 

Barbara Walters

23852 Pacific Coast Highway, Suite 401

Malibu, CA 90265

 

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

SATURDAY MAY 14, 2005


Location:

V.F.W. POST 2639

1515 CORLIES AVE

NEPTUNE, NJ 07753

Doors Open: 7:00 pm
Drawing: 8:00 pm
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

NJCFSA

fighting for a cure.

 

 

Thought for the Month

 

“Learn to build rainbows with clouds.”  Maya Angelou


Special Announcement #2

NJCFSA Walk-a-Thon

New Jersey Chronic Fatigue Syndrome Association
Is Pleased To Announce

1st Walk for Awareness

Sunday, May 15, 2005

Location:

Seaside Heights, New Jersey

(On Boardwalk at Hiering Avenue)

2 Mile Walk

Registration  9:00 A.M.

Walk Starts  10:00 A.M.

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:

jngrassia@yahoo.com 

Special Thanks to our Sponsor

Pine Belt Chevrolet Rte. 88

Lakewood, New Jersey

Next Meeting

The next scheduled meeting will be on May 15th from 2-4 PM at Pascack Valley Hospital.  Our guest speaker will be Lois Weissman, Nurse Practitioner/Family Counselor who will address  family issues and coping skills with CFS.  We encourage everyone to consider attending.  Bring a spouse, parent, friend – anyone close to you who might benefit from the information we will hear that day.  Here is an invitation you can share with someone you wish to attend the meeting with you.

 

 

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

Pascack Valley Hospital

Old Hook Road, Westwood

Sunday May 15, 2005

2 to 4 PM

Sponsored by the Bergen County  Chronic Fatigue Support Group

 

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.