June 2005

 Vol. II, Issue #19

CFS Blue Ribbon          Bergen CFS Support Group Newsletter

 

Meeting Report

 

The meeting was held on Sunday June 12th.   A segment of the Spring conference, held in April, was shown to those in attendance.  Dr. Reeves is the lead CFS investigator with the CDC.  He discussed research that has been completed, research in progress, and possible projects for the future.  The studies support the beliefs that approximately 800,000 people have CFS and the inclusion of a second category, that Dr. Reeves called “CFS-like”, the number of cases rises to 2 ½ million.  He also discussed the CDC case definition of 1994, which has been the standard used to diagnose patients, but lacked criteria for measurement of degree of symptoms.   An empirical version of the original has been formulated.  It includes methods to measure the degree of each aspect and has been shown to elicit result that can be reproduced in any area of the world.   This will be a big step forward in CFS diagnostics.  Dr. Reeves also stated that the diagnosis would be best if made by a General Practitioner because specialists each see the illness from the viewpoint of that specialty – not the entire picture.

 

The video of the whole conference will soon be available in the NJCFSA library.  Those who are members of the NJCFSA can borrow videos, books, and audio tapes for shipping and handling fee of $3.00 to $4.00 (depending on the medium requested).  The current inventory is quite extensive and is supplied to members of that organization.  If you are not a member of the state organization, please consider joining. 

 

On that subject, we offer an explanation of the organizations you may see referenced.

 

Bergen County CFS-FM Support Group

 

This is our local organization.  The goal is to offer support to those in this area.   This could not be accomplished without the larger scale organizations.  A large portion of our printed materials come to us from these other groups.  The Bergen group is free to its members.  At meetings, those who wish to do so can donate a small amount to help off-set the cost of printing materials, and the printing and mailing of the monthly newsletter to those who do not have Internet access.

The New Jersey Chronic Fatigue Syndrome Association (NJCFSA)                           This information is from the www.njcfsa.org  website

“The New Jersey CFS Association, Inc. is a not-for-profit, tax exempt organization whose purpose is to support patients, disseminate reliable information, and promote research. It sponsors a wide range of activities, including: support groups, newsletter, phone list, statewide conferences, hotline, and interfacing with the CFS community. NJCFSA is affiliated with the CFIDS Association of America and the American Association for CFS”.

 

Annual membership is $25 and includes a periodic newsletter and access to the NJCFSA Library.   If you are a NJ resident and cannot afford the membership, you can contact the organization for a possible waiver of the fee.

 

The Chronic Fatigue and Immune Dysfunction Syndrome Association (CFIDS)

 

This national organization uses the alternate name of CFIDS.  This mission statement is from the website www.CFIDS.org.

 

“The CFIDS Association of America is the nation's leading charitable organization dedicated to conquering chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS). The Association works to accelerate the pace of CFIDS research, achieve public policy victories for people with CFIDS, and focus mainstream attention on this serious public health concern.   The Association has invested over $15.2 million in CFIDS education, public policy, and research in its efforts to bring an end to the suffering caused by this devastating illness”.

 

The annual membership fee is $35.

“Membership in the CFIDS Association of America brings you:

Why Should I belong to multiple organizations for the same illness?

 

While it might seem unnecessary to belong to more than one organization, it is hoped that you will consider the importance of each of these groups.  Our local Bergen group offers you meetings, support, and access to a wealth of printed materials.  The Bergen group has a direct link to the New Jersey CFS Association (NJCFSA).  Currently four of our local group members are members of the Board of Trustees of the NJCFSA.  The state group encourages the establishment and maintenance of local groups.  It also maintains a Library, promotes Advocacy, and presents conferences highlighting developments in CFS research.

 

The next step in the ladder is the national organization, Chronic Fatigue and Immune Dysfunction Syndrome Association of America.  This group is involved in activities on the national level.   The focus is on creating awareness and acceptance of the disease, stimulation of research, and education of healthcare professionals.

 

  If you do not have internet access and are interested in joining, please contact us for more information.

Note from Anne Gilmartin                                                                                                                                                                 

As you all know, the meetings are stopped now for JULY and AUGUST. In the meantime, Frank Kawa, one of our regular members, wants to use that time to start some form of socialization, such as going for walks, Van Saun Park, afternoon movie, or a luncheon.  So if you're interested call Frank at 201-768-4111. He would love to hear from someone else who has some good suggestions.  If you're interested, call Frank or get me at this address annielaurie617@yahoo.com or 201 244 5188.  Hope your summer goes well and we'll see you all in September. Call Frank.  Thanks, Anne

CFS Awareness Day                                                                        

Reminder:  Million Letter Campaign – If you participated, please let us know how many letters you sent.  We only heard from 6 people.  We are trying to get an idea of the extent of our involvement.  If you have email please send the number to me at pat@larosas.net.  If you are a US postal recipient, please call Anne with your name and the number of letters you sent.   You can leave a message.  Anne can be reached at 201-244-5188.  Thanks to all of you who participated.

Rx4NJ                                                                                                       

This is part of the information to be found at the site www.rx4nj.org.   If you are having difficulty paying for your medications you may be eligible for this program.   For those of you who do not have computer access, you might look it up on a library computer or Rx4NJ can be reached by phone at 888-793-6765.  We also hope to present more information at a meeting in the near future.

Rx4NJ.org is a program that connects qualified, low-income people with discount prescription drugs, direct from the pharmaceutical manufacturer.

The mission is to increase awareness of and enrollment in existing patient assistance programs for those who may be eligible. Rx4NJ.org offers a single point of access to public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies.

Access to Free or Nearly Free Medicines for Those Who Qualify

Patients will be directed to the public or private programs most likely to meet their needs. Rx4NJ.org helps low-income, uninsured patients:

* Qualifications vary by programs.

Resources

 

If your home is in severe need of repairs that you cannot afford or you need home modifications to accommodate your handicap, you may be eligible for assistance from an organization that serves the truly needy

Rebuilding Together's mission is to preserve and revitalize houses and communities, assuring that low-income homeowners, from the elderly and disabled to families with children, live in warmth, safety, and independence.  In partnership with communities, our goal is to make a sustainable impact.

How are Homeowners Selected?

Homeowners must be low-income and elderly, disabled, or families with children, and unable to do the work themselves. The site selection process takes place locally, within broad national guidelines. Criteria differ slightly from affiliate to affiliate. Individual families are referred through neighborhood associations, churches, synagogues, community organizations, and service groups, or by self-referral.”

More information can be found at this link.

http://www.rebuildingtogether.org/index.php

  

Ideas

 

We are currently considering topics for next season’s meetings.  If there is something you would like to see addressed –either at a meeting or in this newsletter, please let us know.  Our contact info can be found at the end of the newsletter.

 

 

Next Meeting

The next scheduled meeting will be on Sunday September 17th.   It will be the first meeting of the new year.  Sometime in August we will send you information about that meeting and any scheduled programs.  Have a safe and healthy summer.

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.