Bergen
CFS-FM
Support Group Newsletter
Bergen
CFS-FM
Support Group Newsletter
Meeting
Report
Editor’s
note: My apologies
for a very brief newsletter. I seem to
be running short on time and long on things to do.
The next issue will be lengthier.
A large
number of members welcomed our speaker,
Lesley Allen, Ph.D. Dr. Allen is a
clinical psychologist and an Associate Professor at the UMDNJ (Robert
Wood
Johnson). She is a principal investigator on several studies, including
one on
sleep that is in conjunction with the makers of Lunesta.
She has a private practice and encourages the
uses of cognitive behavioral therapy as a means to copy with chronic
sleep
disorders.
A portion
of the program was devoted to
relaxation exercises. Members were told
how they can lower the rate of respirations which will result in a
calming of
the body and mind. There were many
questions
about medications, but Dr. Allen reminded everyone that as a
psychologist, she
does not prescribe medications and that these questions should be
addressed to
physicians. She stated that there is
definitely a place for medication in the treatment of pain and
disordered
sleep. Her current study has some of the
subjects taking Lunesta to determine its possible benefits to patients. Dr. Allen encouraged people to consider the
possibility of becoming involved with clinical trials.
Those who have questions or might be
interested about her trials can contact:
Dr. Lesley
Allen
Robert Wood
Johnson Medical School
671 Hoes
Lane
D-307
Piscataway,
NJ 08854
732-235-4412
732-235-3378
Requirements
for the Lunesta Study: Participants
must be 18-64 years old, have Fibromyalgia or experience widespread
pain, and
have sleeping difficulties.
Meeting Site
As we
reported last
month, Pascack Valley Hospital will close in November.
We are working to ensure that the Bergen
CFS-FM meetings continue as scheduled.
We are still working on arrangements for a new location. We will keep let you know where the December
meeting will be held. Watch for the
notice!
Name
Some of you
may have noticed that “CFS” now
often appears as “CFS/ME” or “ME/CFS.”
It is widely accepted that the name Chronic Fatigue Syndrome
does not
reflect what patients really experience.
In many other countries, it is called Myalgic Encephalopathy or
Myalgic
Encephalomyelitis (ME). In an effort to
unify the world efforts the international communities have chosen refer
to this
illness as CFS/ME or ME/CFS. They are
the same illness. There may someday be a
name change – hopefully it will be an internationally accepted name
****
For Fun***
Social Director, Frank
Kawa, has set a date
Wednesday November 7th
Luncheon
at
The Seville Diner
289 Broadway
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 him at 201-768-4111.
You do not
need to contact Frank to attend.
Do you know
a good doctor?
Perhaps the
most frequently asked question by ANY CFS-FM patient
has got to be, “Where can I find a good doctor?”
If you know
of a doctor that you found to be caring, understanding
or compassionate about CFS, please consider letting us know about
him/her. Our parent organization maintains
a list of
Healthcare Professionals (Physicians, Nurse Practitioners, Physicals
Therapists, Psychologists, any in the health field) and it is
continuously being
updated. There is also an attorney
list.
We really
do want to believe that there are more healthcare
professionals who are willing and able to care for CFS patients. The only way we know about them is through
referrals by grateful patients.
The
credentials of each submission will be verified and the
doctor, lawyer, etc. will be contacted to see if he/she agrees to be
added to
the list.
For each
person you recommend, please include:
·
Your Name
and contact information – in case we have a question
about the information submitted. What seems very clear when you submit
it may
need some extra clarification.
Please
provide the following information for each person you are
recommending:
·
Name
·
Address
(including County)
·
Phone Number
·
Specialty
(Internal Medicine, Rheumatology, Orthopedics, etc.)
·
Comments
(any remarks you may wish to make about this person
“Treats CFS/FM” “Knowledgeable re: disability” etc.)
T’ai Chi
Chih Schedule
Many of our
members have found T’ai Chi Chih to be a very helpful
coping mechanism. It provides gentle,
calming movement that can even be performed sitting in a chair, for
those
unable to stand for any length of time.
For those who are interested, we have included a schedule of
classes at
one local facility. If you live in other
areas, you could check with your local hospital, adult education or
other
community programs to see if they have classes.
*Increased
energy
*Lack
of fatigue
*Greater flexibility & balance
*Spinal strength *Reduced
stress
*Control blood
pressure *Improve
bone density
*Improved focus
and creativity
SEPTEMBER CLASSES
at the LUCKOW
PAVILION OF VALLEY
HOSPITAL
Thursday - November 15th – 9:30 AM
**Intermediate
Classes: Thursday - November 15th - 4:15 PM
Tuesday
– November
13th – 1:00 PM
(**Must
have completed 2 Beginner
Classes and know all the movements.)
Improve your
physical and mental well-being today.
For
registration & information call: 201-634-5359
Class size is
limited.
Register early.
201-444-9712 dorenekr@optonline.net
Visit
www.Taichichih.org for other
locations.
.
Next
Meeting
The next
meeting will be
Sunday November 18th at Pascack Valley Hospital
from 2-4 PM. We hope you will join us for
an open
meeting. There is no set agenda – plenty
of time for people to interact and ask questions. Feel
free to bring refreshments if you would
like to do so. This is expected to be
our final meeting at Pascack Valley Hospital.
Watch for announcements regarding the location of future
meetings.
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,