| MARCH |
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2006 |
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OFFER E-NEWS |
Pace ! Pace !Pace!
Turtles Rule!
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FATIGUE & FIBROMYALGIA EDUCATION & RESEARCH AND THE ARTHRITIS
FOUNDATION UTAH/IDAHOCHAPTER
OFFER
Education Meetings:
"Headaches and
Fibromyalgia"
Susan Baggaley, MS Family
Nurse Practitioner April 5
(Wednesday), 7:00 P.M.
Salt Lake County Complex North Building 2001 South State Street, Salt Lake City, UT
OFFER's Education Meetings are the first
Wednesday of each month,
and are free and open to everyone. Park
free in the lot at the northeast
corner of the complex. See upcoming
meeting topics at
“CFS AND FM:
Selected Research Advances and Implications
for Treatment” was the
topic presented by Lucinda Bateman, MD, OFFER
Executive Director,
and Board member of the AACFS and CFIDS
Associations. We were
fortunate to hear from Dr. Bateman,
nationally respected researcher,
physician, and patient advocate, about some
of the current areas of
research for CFS and FMS. With her usual
contagious positive attitude,
she shared the treatment implications and
gave concrete take-home
messages, including a genuine hope for the
future.
The areas she discussed were:
Gene micro array studies with amazing
graphics , Cardiopulmonary Exercise Testing (CPX), and
Ampligen in Phase III Clinical Trial
(FDA approval still pending). All
support the existence of CFS as an entity, the fact that
exercise tolerance is an issue, and give hope for more
successful guidelines and treatments.
Drugs are in development for FMS that
can be used as tools for managing some aspects of the
illness. There is growing interest in the
pharmaceutical industry to support
research.
Dr. Bateman also discussed a
saline study for blood pressure, and the University
of Utah’s Catalyst group and their plans for future
research. They may be contacting OFFER, so those
interested in being contacted about it should get on
OFFER’s research referral list. (Instructions
Below)
She also shared the CDC’s
education goals of educating the full range
of primary care providers
concerning evaluation, diagnosis, and care
of people with CFS,
introducing CFS into medical school curricula,
and improving public
awareness and understanding.
Don’t worry if
you missed Dr. Lucinda Bateman’s presentation.
It is
available on DVD
and audio CD through OFFER’s website, or at each
Education
Meeting.
IT’S FINALLY READY!
“SEX, RELATIONSHIPS, AND FMS/CFS”
by Patricia Fennell, MSW, CSW-R
One of the 2005 OFFER Conference
Workshops with the highest attendance
was presented by Pat Fennell. The DVD
recording of that presentation is now
ready for sale. Ms. Fennell uses her
“Four Phase Approach,” and her engaging,
lighthearted openness to discuss a
difficult topic in a way that makes you
comfortable. Pat’s experience in
working with people dealing with a
variety of chronic illnesses allows her
to give practical advice for patients
and those who care. It can be extremely
helpful for understanding not just
sexual relationships, but also other
relationships and ourselves as well.
"Fibromyalgia and Pregnancy" Q & A with
Dr Mark Pelligrino,
"Helping Others Helps You "
“The Science & Research of
CFS: A Special
Issue of the CFIDS
Chronicle”
“After months of collaboration with
researchers from around the world,
the CFIDS Association is proud to publish the
Science and Research of
CFS. This special issue of the CFIDS Chronicle
covers CFS research
findings, profiles of key investigators, input
from international researchers,a review of current best treatment
practices and stories about patients and families coping with the
illness.” Go to
http://www.cfids.org/special/default.asp for sample articles
and a complete list of the rest, as well as an order form.
This is a must have for anyone having
or caring for someone
with CFS!
“Men and
Fibromyalgia” by Bob Hall
FAME
(Fibromyalgia Awareness MeansEverything)
is hosting its
National Patient’s Summit this month! Highlights
of the event include
over 60 presentations and workshops to choose from in a
three-day summit, a cruise for the cure Saturday gala
event, over 80 exhibitors featuring the top products and
services, and much more! Come hear addresses by many of
the top doctor’s and physicians in the field speaking
about the latest advancements in the fight for the cure.
For more details, go to
National
Data Bank for Rheumatic Diseases (NDB) Fibromyalgia
Research
The National Data
Bank for Rheumatic Diseases (NDB) is conducting
research into
factors that lead to the development of
fibromyalgia. They
need the help of
people with fibromyalgia in researching this
important issue.
Go to
http://www.arthritis-research.org/fibro.htm
for more information.
Arthritis Foundation Programs:
FIBROMYALGIA AND ARTHRITIS SELF-MANAGEMENT
CLASSES:
The Arthritis Management Program can help you learn to manage your
arthritis on
a day-to-day basis. Trained volunteers, many of
whom have
arthritis or
fibromyalgia, lead the courses. The program
allows you to share experiences with others,
offering you the opportunity to both help and
learn from others.
Say "Know" to Fibromyalgia Pain Take the Arthritis Foundation Self-Help Program, designed for people with arthritis, fibromyalgia and related conditions, to learn how to better manage pain and stress, how to effectively use relaxation and sleep techniques, and for information about medications and alternative therapies. SPRING SPECIAL: The following spring classes are FREE to participate in (normally $30). Pay only $15 if you wish to keep the textbook Good Living with Fibromyalgia. Pre-registration is required as seats are limited. Pick the date and location that work best for you and call today to sign up.
March 16 to
April 20, Thursdays 10:15 A.M. -12:15 P.M. Mt.
Olympus Senior Center, 1635 E. Murray-Holladay
Road, Salt Lake City To register, call Lisa
Butterfield at 274-1710.
March 16 to April 20, Thursdays 1:30-3:30 P.M. Taylorsville Senior Center, 4743 S. Plymouth View Dr. , Taylorsville To register, call Sue Chamberlain at 293-8340.
Gentle Exercise Classes
Looking for an exercise program that will help you, not hurt you? Check out the Arthritis Foundation-sponsored aquatic and dry-land exercise classes, offered at many locations throughout Utah and Idaho. These gentle exercise programs are helpful for many people with FM or CFS. See http://www.arthritis.org/communities/chapters/SignMeupProg.asp?idchap=62
Support OFFER
and Boost Awareness:
You can support OFFER and boost awareness of FM and CFS, by buying T-shirts or recordings of OFFER conference and Education Meeting sessions. Order online at http://www.offerutah.org/offerstore.htm. Another way to help is by buying turtle jewelry -- a gentle reminder that "slow and steady wins the race" and we must learn to pace -- available at http://www.utahcraftconnections.com/cgi-bin/mojoClassified.cgi?type=search&action=search&step=final&s_username=OFFERHOPE Thank you for your continuing support! Interested in Participating in Future Research?
Interested in participating in future
Fibromyalgia or CFS
research? Just fill out the registration
form at http://offerutah.org/OFFERSurvey.htm
and mail
it to OFFER at 1002 E. South Temple,
Suite 408,
Salt
Lake City, UT 84102. OFFER will contact
you when there's a study you may be
interested in; of course, you are under
no obligation to participate. Your
information is kept confidential.
Have a Great Physician or
Health Care Provider?
We need your help in expanding OFFER's list of health care professionals who treat FM and CFS. If you are a patient and would like to recommend someone, please email us at offerregistration@yahoo.com, giving the practitioner's name, title, address, and phone number, along with a brief description of how that person helped you. OFFER will contact the practitioners to ensure they are willing to be included on the referral list. Interested practitioners also are invited to contact OFFER at offerregistration@yahoo.com. The referral list is online at http://offerutah.org/doctors.htm Other Support Groups in Utah: See http://offerutah.org/support.html for a list of other support groups around the state. These include patient-led and professionally facilitated groups. To suggest a group for this list, please contact OFFER at offerregistration@yahoo.com. Learn More About OFFER: Visit OFFER's web site at www.offerutah.org. Check out the "Resource"
section for links to many
informative web sites, and for past
issues of E-News.
CALL FOR VOLUNTEERS
OFFER is in need of volunteers
who would like to help in one or
more of the following areas;
· Help
with Education Meeting
sales,attendance, running
microphone
· Data
entry, office
/ clerical /phones
· Distribution
of Brochures and DVD’s
· Website
content
review and
writing · Public service
announcements and
publicity
· Writing
reviews
of
monthly education
meetings
· Shopping,
cleaning,
driving,
cooking, etc.,
for
homebound
individuals
· DVD
production and
editing
If you have an
interest in
doing any of
these, please
call OFFER at
328-8080 or send
an email to
offerregistration@yahoo.com.
E-News Subscriptions: Feel free to forward this email to anyone who might be interested. To start your subscription to this free newsletter, send your request to
offerregistration@yahoo.com,
or fill out the
online form on
our website at
this link; http://www.offerutah.org/e-newsform.html.
You may
unsubscribe at
anytime by
clicking the
link at the
bottom of the
E-news. At no
time will OFFER
ever sell or
give your email
address or any
other personal
information to
anyone.
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| Please note: the inclusion of information in this newsletter does not constitute or imply endorsement by OFFER or the Arthritis Foundation Utah/Idaho Chapter. Please consult your medical care provider before using any medication or therapy. |
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