Vol. IV, Issue #32
Bergen CFS Support Group
Newsletter
Meeting
Report
The
first
meeting of the season was held on Sunday September 17th.
It
was great to welcome some new members. This meeting also marked
the
official merger of the Bergen CFS and FM Support Groups. We
welcome all
who have joined.
At
the meeting
it was announced that Anne Gilmartin has stepped down as our group
leader. She has been quite ill and needs to take time to recover.
We hope
Anne will soon be feeling better. We would like to thank her for
her many
years of tremendous service and dedication to the Bergen County CFS
Support
Group. In her absence, the members who have been on Anne’s
planning
committee have agreed to serve as a group. The Bergen Team
consists of
Frank Kawa, Pat LaRosa, Judy Machacek and Nancy Visocki. We
have been
working with Anne for a few years and hope the transition will be
smooth.
We are always open to ideas or suggestions for meetings.
Flu Season
At
the Fall
Conference 2005, the question about flu shots and CFS was raised. The
responses
are from two of the speakers of that day: Dr. Susan Levine (an
immunologist who
specializes in CFS) and Dr. Paul Cheney, Director of the Cheney Clinic
in North
Carolina, who is a pioneering clinical researcher in CFS).
Q. If I have CFS should I get the flu shot?
Dr.
Levine: If the patient has
a history
of getting the flu shot and has not had adverse affects, they could
continue
getting it; although there is no guarantee that they won’t have a
negative
reaction.
Dr.
Cheney: I agree with Dr.
Levine
about being on the fence regarding this topic. One must consider the
reaction
to the vaccine vs. getting the virus. The flu shot is an antigen
stimulus that
could set off a syndrome in CFS patients. If you have a history of
getting the
flu shot and are in an environment that gives you a higher probability
of being
exposed, then you might consider getting the vaccine. If you are more
isolated
and would not likely be exposed to the virus, then more likely you
shouldn’t
get the vaccine. The decision is based on patient-to-patient case.” [Source: NJCFSA Newsletter
Spring/Summer
2006]
If you are one
of those who
elect to get a flu shot and find your physician does not have any, you
can go
to www.findaflushot.com
for a
listing of clinics in your area
NJCFSA
Fall Conference
The
Bergen Support Group is affiliated
with the New Jersey Chronic Fatigue Syndrome Association, Inc.
(NJCFSA).
The conferences are presented for both physicians and patients. We strongly urge
you to
attend.
You will have the opportunity to hear some extremely CFS educated
people and to
meet so many attendees who share your experiences.
N. J. Chronic Fatigue Syndrome Assoc. Inc. and Monmouth Medical
Center
Present
Chronic
Fatigue
Syndrome Fall 2006 Conference at Sheraton at Eatontown, NJ
Sunday, October 22, 2006 11:30 AM-5:00 PM
Dr. Benjamin Natelson * Dr.
Lucinda Bateman
* Dr. Susan Levine
Trisha Steefel * Ken
Friedman. PhD
To register go to
www.NJCFSA.org
and click on Fall Conference to access a brochure/registration form or
use the
form included below. If you have questions call Pat 201-385-4194
as soon
as possible.
Program
11:30
–12:45 PM
Registration, Exhibits, and Buffet Lunch (if pre-registered.)
12:45
– 1:00 PM.
Introduction & Welcome
1:00 –
1:45 PM Tips and Travails of Treatment
Lucinda
Bateman, MD, will share her
clinical experiences with exercise,
medications, and dietary changes to improve symptoms of CFS patients.
1:45 –
2:30 PM Research Updates in CFS
Susan
Levine, MD, will provide updates
of ongoing research relating to Herpes virus
activity and immune status; and will report on progress in an ongoing
NMR
Spectroscopy Study in CFS patients.
2:30 –
2:45 PM
Break
2:45 –
3:00 PM CFS Advisory Committee Update
Dr. Kenneth
J. Friedman, PhD
3:00 –
3:30 PM Some Times You Just Have to Laugh
Trisha
Steefel
will share her humorous account of what it is like to be an
adolescent growing up with CFS and Fibromyalgia.
3:30 –
4:15 PM Research in CFS: What it is and How
it is Done
Benjamin
Natelson, MD, will explain the
difference between seeing a physician
for treatment versus participating in clinical research. Behavior of
immune-active substances responsible for unrefreshing sleep will be
presented
as examples on ongoing research.
4:15 –
5:00 PM Questions and Answers
Monmouth
Medical Center relies upon faculty in its CME Program to provide
educational
information that is objective and as unbiased as possible. In
accordance with
the nationally accepted guidelines, faculty is asked to indicate any
commercial
relationship that might be perceived as real or apparent conflict of
interest. NJCFSA, Inc.
General
Information
The annual
fall conference
of the New Jersey Chronic Fatigue Syndrome Association, Inc. is
co-sponsored by
Monmouth Medical Center. It will provide information on CFS for primary
care
physicians, specialists in endocrinology, infectious disease
immunology,
pediatricians, and other health care providers. CFS/CFIDS patients and
their
families will benefit from up-to-date information on research, and
treatment,
as well as from an opportunity to network. Please register early, as
seating is
limited. Make checks payable to NJCFSA, Inc. Your canceled check is
your
receipt. You will not receive a confirmation letter. In
consideration of patients with allergies and chemical sensitivities,
this
conference is fragrance and smoke free, and pet-free. The
registration
fee includes buffet lunch and program handouts.
Parking is
free and
readily available.
Other
hotels and Motels in the Area:
Holiday Inn,
Tinton Falls
800/HOLIDAY Red Roof Inn, Tinton Falls
800/943-7663
Days Inn, Wall
Township
800/325-2525
About
the Speakers…
Lucinda
Bateman,
MD, is a general
internist who
specializes in the treatment of CFS, Fibromyalgia and chronic fatigue.
She
opened the Fatigue Consultation Clinic in Salt Lake City with the goal
of
improving the daily life of patients with chronic illness. Dr. Bateman
is
active in research, education and advocacy and is on the Boards of
OFFER
(Organization for Fatigue and Fibromyalgia Research), IACFS
(International
Association of CFS), and CFIDS Association of America.
Susan
M. Levine,
MD, is a Board
Certified,
Infectious Disease and Allergy & Immunology specialist with a
primary
interest in CFS and FM. She has published many research papers in peer
reviewed
journals. She also served on the Name Change Committee, reporting to
the
Surgeon General of the United States. Dr. Levine was a contributing
author to “A
Consensus Manual for the Primary Care and Management of CFS.”
Benjamin
Natelson,
MD, is a Professor of
Neurosciences at UMDNJ and past director of the New Jersey Chronic
Fatigue
Syndrome Center. He has published numerous research papers on various
aspects
of CFS in peer reviewed journals and is the author of several books.
Dr.
Natelson also treats CFS patients in his practice in at UMDNJ in
Newark, NJ.
Trisha
Steefel was diagnosed
with CFIDS and Fibromyalgia at age
12. Trisha began writing articles as a teenager describing her personal
struggle with CFIDS. As a college student, Trisha was active in raising
disability awareness on campus and arranging accommodations for
individuals
with chronic illness. Trisha has completed college and is now able to
work full
time. She was recently elected to the Board of the NJCFSA.
About
CME Credit
This
activity has been planned and implemented in accordance with the
Essential
Areas, Standards and Policies of the Medical Society of New Jersey
through the
joint sponsorship of Monmouth Medical Center and NJCFSA, Inc. Monmouth
Medical
Center is accredited by the Medical Society of New Jersey to sponsor
continuing
medical education for physicians. Monmouth Medical Center
designates this
educational activity for a maximum 3.5 AMA PRA Category
1 Credits™.
Physicians should claim credit
commensurate with the extent of their participation in the activity.
Target
audience: Internal Medicine, Infectious Disease, Endocrinology
Physicians.
Other Healthcare members are
welcome
to attend. At the completion of this conference, the participants
should be
able to: x Review the treatment of
patients
with CFS and identify problems, which may arise from treatment. x Discuss immune status
and the occurrence of Herpes
activity in CFS patients. Describe how NMR Spectroscopy can demonstrate
brain
dysfunction in CFS patients.
x
Recognize
the impact that CFS and
FM can have on an adolescent and how humor can be used as a
coping
mechanism. x
Explain how
participating in
research studies differs from seeing a physician for treatment. Discuss
how
immune-active
substances may impact sleep.
Participants
must pre-register for the conference and for CME credit. On the day of
the
conference, sign in at the registration desk and pick up course
materials.
Physician’s registration fee is $95.
REGISTRATION
FORM
CFS
Conference 10/22/06 (Call
Now to reserve a space!)
Please
copy and fill out for each attendee:
Name
Address
City/State/Zip
Daytime
Phone #
DATE:
Sunday, October 22, 2006
SITE:
Sheraton Conference Center Eatontown, New Jersey
TIME:
11:45 am to 5:00 pm
FEE: $35
per person if pre-registering $45 at the door
DEADLINE:
October 8, 2006 Due to the late
date, the
deadline for receiving your check is extended to October 16th!
REGISTRATION
INFO: (888-835-3677)
DIRECTIONS
TO SHERATON: Garden State Parkway to Exit 105, Route 36 East to Route
35 South
to Industrial Way East. The Sheraton is approximately 5 minutes from
the Garden
State Parkway Exit.
Physicians
must
pre-register
for CME credits. Call Kathy Fiore at 732- 923-6790. Fee is $95.
$35
per
Registration mailed by 10/08/06 $45 per Registration
at the door
If
you are not an NJCFSA member,
please
consider an annual membership
for
an additional $25 per person.
Registration(s):
#_____ @ $35: $________
Membership(s):
#_____ @ $25: $________
TOTAL:
$________
Make
check payable to “NJCFSA,
Inc.” Your
returned check will be your receipt.
Please
mail check and this panel to:
NJCFSA
Fall Conference 2006
P.O.
BOX 444, Cresskill, NJ 07626
For
Those Who Desire….
A
block of
rooms at a discounted rate of $129/night (plus tax) has been
reserved at the
Sheraton Eatontown Hotel for attendees of the conference. To obtain
this rate,
call the Sheraton at (732) 542-6500 before 09/15/06, and mention the
NJCFSA
conference.
For Your
Information
The
above
conference is sponsored by the NJCFSA, Inc. It is a non-profit
organization that educated, promotes research, provides support and
offers
annual scholarships to a graduating High School senior and another to a
med
student. We encourage you to join this organization.
The
other group
that is very powerful in spreading the word about CFS is the CFIDS
Association
of America (www.cfids.org).
Members
receive two publications: the Chronicle and the Research Review.
The
CFIDS organization lobbies in Washington on our behalf.
For our FM members – Most of CFS
information
applies to people with FM. For those with FM who seek a site that
is more
FM centered, it has been suggested that www.Co-Cure.org
is a good source of information along with http://www.fmaware.org
(The National Fibromyalgia Association).
Literature
Review source:
http://www.cfids.org/cfidslink/2006/application.asp
|
Grid
At the end of this
newsletter,
you will find two grids. Your physician has very little time to
evaluate
you during a visit. If we start to enumerate symptoms, the odds
are that
only the first few will be heard. By providing a tool that
summarizes a
month on one page, the physician can see the overall situation in a
glance. At the end of each day, you simply make a mark next to
the
symptoms you experienced that day. You will find one grid has
common
symptoms listed. The second one is blank, allowing you to create your
own list
of symptoms. It is suggested that you make a copy of your filled
in pages
before bringing them to the doctor, or ask the office staff to make a
copy if
the doctor wants to keep it in your file
Thought
The Tiny Frogs
There once was a bunch of tiny
frogs, who
arranged a running competition. The goal was to reach the top of
a very
high tower. A big crowd had gathered around the tower to see the
race and
cheer on the contestants. The race began. No one in the
crowd
really believed that the tiny frogs would reach the top of the
tower. You
heard statements such as: “Oh, way too
difficult!!;”
“They will never make it to the top;” or
“Not a chance
that they will succeed - the tower is too high!”
The tiny frogs began collapsing -
one by
one…except for those who, in a fresh tempo, were climbing higher and
higher. The crowd continued to yell “It is too
difficult!!!” “No
one will make it!” More tiny frogs got tired and gave up; but ONE continued higher and higher and higher.
This one
wouldn’t give up!
At the end everyone else had given
up
climbing the tower. Except for the one tiny frog, who - after a big
effort -
was the only one who reached the top! The other tiny frogs
naturally
wanted to know how this one frog managed to do it. A contestant
asked the
tiny frogs how the one who succeeded had found the strength to reach
the
goal. It turned out that the winner was DEAF!!!!
The wisdom of this story is: Never
listen to
other people’s tendencies to be negative or pessimistic because they
take your
most wonderful dreams and wishes away from you. The ones you have
in your
heart!
Always think of the power words
have.
Because everything
you hear and read will affect your actions! Always be positive! And above all be deaf
when people tell you that you can not
fulfill your dreams! Always think - I
can do this!
CFS ICD 9 Code
At the meeting one of the items
discussed is
getting proper documentation of CFS. The code number that your
doctor
should be using is: 780.71 – Chronic Fatigue Syndrome.
Schedule for
October -
December
October
15,
2006 Tai Chi Chih: Gentle
Motion
Dorene Karuse,
Accredited T’ai Chi Chih
Teacher
Healing Touch
Maryann Nystedt,
Accredited Healing Touch
Practitioner
October
22,
2006 NJCFSA Conference in
Eatontown
Sunday
11:30 am to 5: pm, includes Buffet Lunch
Managing Symptoms and Exploring New Research
November
19, 2006 NJ Office of Disability Determinations
How to file for Social Security Disability Benefits
December
17, 2006 Holiday Party
Bring family and
friends. You are also welcome to
bring
something for
the
sharing table – if you are up to it.
Next Meeting
The next
scheduled meeting
will be on Sunday, October 15th. We hope to see
you. We
have two guest speakers scheduled. One will demonstrate Tai Chi
Chih
which is a gentle form of Tai Chi suitable for most CFS and FM
patients.
The second speaker will present information on Healing Touch.
These are
two forms alternative therapies that some people find help them cope
with their
symptoms. We do not necessarily endorse every speaker but present
the
information as a possible coping technique.
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,
or Judy Machacek at judymachek@msn.com.
If you would like to receive the following grids as an attachment, please let me know pat@larosas.net