June 2007                  

                                                                                Vol. IV, Issue #41              

           Bergen CFS-FM Support Group Newsletter

Meeting Report

The meeting was a sharing session of questions, answers and suggestions.  Some of the newcomers were reassured by long-time members that their experiences and frustration are familiar to many of us.  It was also stated that people often figure out they have CFS and/or FM before the doctors finally make a diagnosis.  Coming to the meetings can offer support while the diagnostic process continues.  If the ultimate diagnosis proves to be something else, you have lost nothing.  For those of you who cannot attend the meetings, we hope this newsletter helps.  You are not alone.


Some members expressed an interest in meeting in July and August.  We have made room arrangements for the third Sunday of those months (2-4PM).  In July, the informal gathering will be held in the Executive Dining Room and in August it will be held in the regular downstairs meeting room.  These will be informal meetings.  Some of the co-leaders will not be in attendance, but Social Director Frank Kawa expects to be there.  You are welcome to come and spend time with your CFS friends.  



Just For Fun

Social Director, Frank Kawa, has set a date (Wednesday July 11th) for a luncheon at The Seville Diner 289 Broadway in Westwood.  The group will be there from 1:30 PM until about 3 PM.  Just show up.  If you have any questions or wish to let Frank know you are coming, you can call Frank.  He can be reached at 201-768-4111.  You do not need to contact Frank to attend.



FYI                                COMING THIS FALL *  SAVE THE DATE!

 New Jersey Chronic Fatigue Syndrome Association


Monmouth Medical Center


NJCFSA Fall 2007 Conference

at the

Sheraton Conference Center

Eatontown, New Jersey

October 7, 2007

11:30 am – 4:30 pm


Richard Podell, MD

Dharam Ablashi, MD

Susan Levine, MD

Malcolm Schwartz, MD, as Moderator

Exhibits, Buffet Lunch, Presentations, Awards Ceremony,

Question and Answer Panel


For additional conference information (e.g., general information, speaker bios, CME credits, and registration information), check our website  www.njcfsa.org.


At the end of this newsletter, you will find information about sponsorships and exhibiting at the conference.


In The News



Dr. Lucinda Bateman is actively seeking fibromyalgia patients, ages 18-70, to participate in clinical research studies of three investigational drugs for the treatment of Fibromyalgia.  If you are interested, call Dr. Bateman’s office (801-359-7400) and talk to Ali Allen, RN, research coordinator, or others on the research team, to learn more about the drug studies currently underway.  Qualified participants receive study-related physician visits, lab evaluations, and the investigational medication at no cost.


On June 21, 2007, Pfizer's drug Lyrica became the first drug ever to achieve an FDA "indication" for FMS.  It is the beginning of a number of drugs racing to the market to help with FM symptoms.


*Editor’s Note:  If you think you might be interested, you might want to call to see if the study can be done long distance.  Dr. Bateman is located in Utah, the site of OFFER (Organization for Fatigue & Fibromyalgia Education and Research).


Next Meeting

Informal gatherings will be held in July and August.  Frank Kawa expects be there to meet those who wish to attend.  No programs will be planned.  Come and share some time with people who also have CFS and/or FM.


The next formal meeting will be Sunday September 16th at Pascack Valley Hospital from 2-4 PM. 



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: Pat LaRosa at pat@larosas.net, Nancy Visocki at ngv.njcfsa@verizon.net, Judy Machacek at judymachek@msn.com or Frank Kawa at 201-768-4111.



Conference Exhibitors & Sponsors

If you have a business or know someone who might be interested in being a sponsor or exhibiting at the upcoming conference, please share this information with them.  Contact us if you have any questions.








11:30AM – 4:30PM




Agency/Company:                  ___________________________________

Contact person:                       ___________________________________

Address:                                  ___________________________________


Email:                                      ___________________________________

Phone:                                     ___________________________________


Exhibitor Fee: $150

Please enclose this form, and make check payable to: “NJCFSA, Inc.”

Mail to: P.O. Box 444, Cresskill, NJ.  07626-0444

Payment must be received by September 28, 2007


Instructions for Exhibitors:

Exhibitor fee includes lunch for 2 exhibitors.

Exhibits will be set up in the conference room lobby, along with buffet lunch.

Exhibitors should begin set up at 10:00am.

Registration, lunch and the exhibitor area opens at 11:30am for conference attendees.

Conference attendees will visit the exhibitor area again during a 2:30pm break.

The conference ends at 4:30pm. 

Exhibits must be taken down by 5:30pm.


BY FRIDAY, SEPTEMBER 21, 2007:  Please send a short description of your company’s products or services, as a list of exhibitors (and such description) will be included in the registration booklet.  Also provide a contact name, address and phone number so that we can direct inquiries to you. Email to:  nvisocki@verizon.net.

For a copy of the conference brochure, please visit our website at www.njcfsa.org.


Thank you for your interest in NJCFSA.  We look forward to your participation!

Eileen Holderman,     Conference Chair (646-567-8125)



A booklet of sponsors will be distributed to conference attendees.  The donation price is $100 donation for a full page, and $50 donation for a half page.   The sponsor can provide text to be printed.  A business card can be supplied, but will not necessarily be reproduced as such. The data will be included.