Vol. II, Issue #16
Bergen CFS Support Group Newsletter
The meeting was held on Sunday March 20th. Due to CFS symptoms, Barbara Comerford was unable to attend the meeting. We wish Barbara well and hope she feels better soon. We look forward to hearing her at the spring conference (see below).
Roseanne Trapani, a graduate student at
We welcomed several new people to the meeting and were happy to have the time to address their concerns. One caution shared with these new members is the importance of making sure the doctor assigns the proper diagnostic code to the illness. If you have been diagnosed with CFS, the code 780.71 should appear on your bill. This shows that your physician recognizes that you have CFS. If some day you decide to apply for disability this will be a vital piece of data.
Ralph Higdon, who is both a member of our group and the leader of the FM Support Group, has shared information provided to him by the Arthritis Foundation. Rx4NJ is a program for people who cannot afford medications. There are two means of contact.
1) Health Care Institute of NJ at 908-0624-9888
2) Rx4NJ PO Box 722 Hillside, NJ 07205 phone 888-793-6765 email www.rx4nj.org
The conference is always enlightening and we encourage everyone to try to attend.
ANNUAL NJCFSA CONFERENCE in
cooperation with Robert Wood Johnson University Hospital
Community Education Department
Saturday, April 30, 2005
12:00 pm Registration/Exhibits Light
1:00 pm Welcome and Introduction
Moderator: Karen W. R. Lin, MD, MS Assistant Professor of Family Medicine UMDNJ-Robert Wood Johnson Medical School New Brunswick, New Jersey
1:15 pm Results of CFS Studies Undertaken by the CDC and Research in Progress William Reeves, M.D.
2:00 pm Circulatory Dysfunction in Chronic Fatigue Syndrome Julian Stewart, M.D., Ph.D.
2:45 pm Award Presentation/Break
3:15 pm Prevalence of CFS in Families – A Research Study Rosemary A. Underhill, MB, BS, MRCOG, FRCSA
4:00 pm CFS, Social Security and Disability Insurance: Know Your Legal
Rights ! Barbara Comerford, Esq.
4:45 pm Questions and Answers
William Reeves, M.D., is Chief
of the Viral Exanthems and Herpesvirus Branch, Division of Viral and
Julian M. Stewart, M.D., Ph.D.,
is a pediatric cardiologist and Director and Associate Chairman for
Rosemary A. Underhill, M.B., B.S., MRCOG, FRCSE, is a consultant to the New Jersey CFS Association and a member of the board of trustees of NJCFSA. Dr. Underhill received her medical degree from the
College of Obstetricians and Gynecologists. She is the principal investigator of a study on the prevalence of Chronic Fatigue Syndrome and chronic fatigue among family members.
Barbara Comerford, Esq. is a graduate of
research board); the CFIDS Association of America (for which she also served as Secretary) and the New Jersey Chronic Fatigue Syndrome Association among many others.
WHO SHOULD ATTEND
Health Care Professionals, CFS/CFIDS Patients and their Families and Friends.
By participating in this conference, you should be able to better understand:
- demographics and prevalence of CFS
in the community; the consequent economic impact and the scope of
- likely causes and mechanisms of circulatory dysfunction in CFS patients;
- genetic and environmental risk factors for CFS in patients’ family members;
- services available to CFS patients from social security, disability
insurance, and how to obtain these services.
ADDITIONAL INFORMATION Health Care Professionals
Call: (732) 235-7430
Patients/Family Members Call: (732) 418-8110
Traveling Route 1 North: When you get to the
From Route 1 South: Cross the
From Route 287 North and South: Take Exit 10 and follow Route 527 (
** GENERAL DIRECTIONS TO
Proceed on Route 18 North about two miles to Route 27 South (Princeton Exit.) Follow Route 27 to the fourth traffic light (by RR station.) Turn right onto
TO THE RWJUH HOSPITAL COURTYARD: From the parking deck, take the elevator to the first floor. Make a right and the registration table will be to your right. Please bring your parking deck ticket to be stamped at the registration desk.
First Name __________________________________________
Last Name ____________________________________________
Day Phone ____________________________________________
____ Enclosed is a check for $30 per person made payable to: NJCFSA, Inc.
Payable by check only please. Your returned check will be your receipt. mail your check along with a copy of this page to:
Education Department, RWJUH
P.O. Box 2601
Total Amount Enclosed
CFS Awareness Day
Acting Gov. Codey has declared May to be Chronic Fatigue Syndrome Awareness Month. The full proclamation will be included in the next newsletter.
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.
Coming Up In May, the speaker will be a nurse practitioner speaking on the dynamics in the family of the CFS patient. Please invite your spouse, mate or a friend to attend with you. The information should be very valuable. The lower level meeting room is accessible by elevator and wheelchairs do not pose a problem.
Recently someone asked about Dr. Bell’s Newsletter – Lyndonville News. This is the link to that site: http://www.davidsbell.com/
The next scheduled meeting is April 17th from 2-4 PM at Pascack Valley Hospital. There is a dual agenda. First we will be writing letters for the million letter campaign and then we will show the film “I Remember Me”. If you have not seen it, it is well worth seeing. Bring a friend.
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.