March 2005

 Vol. II, Issue #16

CFS Blue Ribbon          Bergen CFS Support Group Newsletter

 

Meeting Report

 

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 Kean University, attended the meeting seeking people to participate in a questionnaire that is a part of her thesis.  The topic was “Sources of stress in the marital stability of individuals with serious illness”.  Several of those in attendance were able to participate by completing the form.  Roseanne said she will share the results of the survey when the study is completed.

 

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

 

ANNOUNCEMENT

The conference is always enlightening and we encourage everyone to try to attend.

 

14th ANNUAL NJCFSA CONFERENCE in cooperation with Robert Wood Johnson University Hospital
Community Education Department

UMDNJ  

Chronic Fatigue Syndrome Update on Research and Care to be held Saturday, April 30, 2005
12:00 noon to 5:00 PM
at the Arline and Henry Schwartzman Courtyard
Robert Wood Johnson University Hospital
New Brunswick, NJ
 The Conference is smoke, scent and pet free.
Please respect your fellow participants.

PROGRAM AGENDA

 
Saturday, April 30, 2005

 

12:00 pm Registration/Exhibits Light Refreshments
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
4:15 pm Adjourn

PRESENTERS

William Reeves, M.D., is Chief of the Viral Exanthems and Herpesvirus Branch, Division of Viral and Rickettsial Diseases, National Center for Infectious Diseases, Centers for Disease Control (CDC) in Atlanta, Georgia. The primary mission of the Branch includes public health research of chronic viral diseases, primarily Chronic Fatigue Syndrome (CFS) and diseases associated with human papillomavirus (HPV).

Julian M. Stewart, M.D., Ph.D., is a pediatric cardiologist and Director and Associate Chairman for Research at New York Medical College and Research Associate in Anesthesia at Boston Children’s Hospital. Dr. Stewart’s current research is to determine whether postural tachycardia syndrome is a major cause of Chronic Fatigue Syndrome in the young.
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 Royal Free Hospital Medical School in London, England. Dr. Underhill was a Fellow of the Royal College of Surgeons in Edinburgh and a Member of the Royal
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 Seton Hall Law School and the owner of The Law Offices of Barbara Comerford in Ridgewood, NJ and New York City. Ms. Comerford has concentrated her law practice in the area of Disability law, with an emphasis on ERISA and individual long-term disability insurance, Social Security Disability and Government pensions. Ms. Comerford has sat on numerous Boards including the Northeast New Jersey Legal Services Board; the American Association of Chronic Fatigue Syndrome (an international medical
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.

 
LEARNING OBJECTIVES

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 future research;
- 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


 DIRECTIONS

From New Jersey Turnpike North or South: Take Exit 9 (New Brunswick) to Route 18 North. Continue as below (**).
Traveling Route 1 North: When you get to the New Brunswick area, follow signs for Route 18 North New Brunswick (bear right at Exxon Station). Continue as below (**).
From Route 1 South: Cross the Morris Goodkind Bridge. Stay to the Right at Loews Cinema, and take the exit ramp to New Brunswick, Route 18 North. Follow signs for Route 18 North, New Brunswick and continue as below (**).
From Route 287 North and South: Take Exit 10 and follow Route 527 (Easton Avenue) for about six miles until you see a RR overpass (just after the intersection of Easton Avenue and Somerset Street.) Make a right onto Little Albany Street. The hospital parking deck is 75 yards on the left.
Traveling the Garden State Parkway North (from South Jersey): Exit 105 (to Route 18 North New Brunswick). Continue on Route 18 for at least a half-hour until you pass the NJ Turnpike entrance and continue as below (**).
Traveling the Garden State Parkway South (from North Jersey): Exit 130 (to Route 1 South). Travel about nine miles, cross the Morris Goodkind Bridge. Stay to the right at Loews Cinema. Take Route 18 North New Brunswick and continue as below (**).
** GENERAL DIRECTIONS TO ROBERT WOOD JOHNSON UNIVERSITY HOSPITAL:
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 Easton Avenue, make a left at the next light onto Somerset Street. Proceed one block to the intersection of Little Albany Street and make a left. The parking garage entrance is on the right.
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.

REGISTRATION FORM   for Patients and Family members                                            NJCFSA Conference April 30, 2005

First Name __________________________________________

Last Name ____________________________________________

Day Phone ____________________________________________

Mailing Address
____________________________________________

____________________________________________

City/State/Zip ____________________________________________

Additional Names
_______________________________________________________________________

_______________________________________________________________________

____ 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:

Community Education Department, RWJUH
One RWJ Place
P.O. Box 2601

New Brunswick, NJ  08903

(732) 418-8110

Total Amount Enclosed $_____________________
 

CFS Awareness Day                                                                                                              May 12, 2005 is annual CFS/FM Awareness Day.  We would like to remind you about the Million Letter Campaign.  If you do not have the information from previous newsletters please use the contact information at the end of the newsletter to contact us.  Previous newsletters are also available at www.NJCFSA.org.   

 

Proclamation 

Acting Gov. Codey has declared May to be Chronic Fatigue Syndrome Awareness Month.  The full proclamation will be included in the next newsletter.

 

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.

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.

Info

Recently someone asked about Dr. Bell’s Newsletter – Lyndonville News.  This is the link to that site:  http://www.davidsbell.com/

 

Next Meeting

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.

 

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.