Bergen
CFS Support Group NewsletterJune 2005
Vol.
II, Issue #19
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
“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
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
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
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.
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.