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OFFER E-NEWS
August 2006
SPONSORED
BY
THE
ORGANIZATION FOR FATIGUE AND
FIBROMYALGIA EDUCATION AND RESEARCH
AND THE
ARTHRITIS FOUNDATION
UTAH/IDAHO CHAPTER
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OFFER E-NEWS
August 2006
SPONSORED
BY
THE
ORGANIZATION FOR FATIGUE AND
FIBROMYALGIA EDUCATION AND RESEARCH
AND THE
ARTHRITIS FOUNDATION
UTAH/IDAHO CHAPTER
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QUICK LINKS
~~~
"When you
reach the end of all the lightness that you know
And are
about to step over into darkness .
Faith is
knowing that one of two things will happen.
Either
there will be something solid there to step onto
Or you
will be taught how to fly."
Author
Unknown
~~~
~~~
"Two things
are infinite: the universe and human stupidity; and I'm not sure
about the universe."
Author: Albert Einstein
~~~
~~~
Most of the important
things in the world have been accomplished by people who have
kept on trying when there seemed to be no hope at all."
Author:
Dale Carnegie
~~~
~~~
"When
Life goes to pieces,
make a
quilt."
Author: Sue Hughes
~~~
~~~
"When
we honestly ask ourselves which person in our lives means
the most to us, we often find that it is those who, instead
of giving much advice, solutions, or cures, have chosen
rather to share our pain and touch our wounds with a gentle
and tender hand. The friend who can be silent with us in a
moment of despair or confusion, who can stay with us in an
hour of grief and bereavement, who can tolerate not knowing,
not curing, not healing and face with us the reality of our
powerlessness, that is a friend who cares."
Author: Henri Nouwen, "Out of Solitude"
~~~
~~~
"Become a possibilitarian. No matter how dark things seem to be
or actually are, raise your sights and see possibilities -
always see them, for they're always there."
Author: Norman Vincent Peale
~~~
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OFFER
Education Meetings:
OFFER's
Education Meetings are the
first Wednesday of each month at 7:00
p.m.,
and are free
and open to everyone.
Council
Chambers, Salt Lake County Complex North Building
2001 South
State Street, Salt Lake City, UT.
(Park free at
the northeast corner of the complex)
~~~ August 2, 2006
Kathleen Light, Ph.D.
University of Utah “New University of Utah Research on Sources of Chronic Fatigue and Pain”
To learn
about participating in the study "Exercise Effects on Sensory
Receptors and Cytokines in CFS and FM," contact Dr. Bateman at
(801) 359-7400 or
support@fcclinic.com, or Dr. White at
andrea.white@health.utah.edu or (801) 573-5387.
To be
contacted when there are future studies, enroll in the research
registry at
http://offerutah.org/OFFERSurvey.htm
~~~
September 6, 2006
Special
meeting for people who care about young people who suffer with
CFS/FM. Local officials will explain 504s, student's rights, and
how schools can accommodate for their needs.
~~~
Find more
information about upcoming meetings at
~~~~~~~~~~~
FEBRUARY AND
MARCH EDUCATION MEETING
DVDs NOW
AVAILABLE
~
February,
2006: "Postural Guidelines and Helpful Habits to Minimize Body
Stress"
by Dawn
Duran, PT, MHS, CSCS from Canyon Rim Physical Therapy
If you missed
February's meeting, you missed learning about "the Rule of
Tongue," Kegels for men and women, and other bits of advice and
helpful tips that anyone, no matter what their health condition,
can do - from breathing correctly to stabilizing the core.
~
March
2006: "Finding and Evaluating Medical and Self-Help Information
by Paul
Shepherd, OFFER Board member, patient advocate
With so much
conflicting information about CFS, FM, and other conditions,
it's hard to know what is reliable. Paul offered help by
assembling a wealth of information about finding and evaluating
sources via the Internet and other places, lists of good links,
and some important questions to ask.
~~~~~~~~~~~~
LOCAL
AWARENESS EVENTS
"Faces of CFS"
a traveling photo exhibit, will be visiting a few
select US cities this year, including ours! Mark your calendar
to make sure you don't miss it:
OCTOBER 4-7
SALT LAKE
CITY MAIN LIBRARY,
3rd FLOOR
Gallery
Other related
awareness activities:
- Oct. 4, 7
p.m. Kim McCleary, CFIDS CEO and the nation's top CFS Advocate,
speaks at Education Meeting
- Oct. 5, 7
p.m. free film at the SLC Main Library
- Oct. 7, 1
p.m. rally on East steps of City/County Building then
"Walk-a-Block" for CFS/FMS awareness, followed by free
films at 2 p.m. at the SLC Main Library
~~~~~~~~~~~
IN THE NEWS LINKS:
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Report on the July 17, 2006 DHHS CFS
Advisory Committee Meeting
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Urge Secretary Leavitt to renew the CFSAC
charter
~~~
Participate in FM and CFS Research from your Home
If you would like to contribute to a global fact
bank on people with serious chronic illness, click on the link
below. The purpose of the survey is to pinpoint the factors
that distinguish those patients who achieve better health and
recovery. The "Niagara Health Study," conducted by Canada's
Brock University, is gathering the raw data via an online
"no-names-involved" survey. A report on the data and findings
from this worldwide study will be reported by mid-2007.
~~~
Fibromyalgia in the News
~~~
CDC/CFIDS Campaign to:
"Spark!" Public Awareness Update
Look for the
full-page CFS ad in the July issues of
Ladies'
Home Journal and
Better
Homes and Gardens
~~~ ~~~
INFO-LINKS
~~~
Pharmacotherapy for CFS
The most
common prescription and over-the-counter drugs, nutritional
supplements and herbal remedies that physicians are using to
treat their patients with CFS, From the CFIDS organization:
http://www.cfids.org/special/pharma.pdf
~~~
~~~
Young Adults Forum Section, Youth Chat
pediatric education packages for kids with cfs
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Mayo
Clinic's Health Symptom Checker
~~~
How
to Talk to your Health Care Provider
~~~~~~~~~
Promote OFFER
You
can support OFFER and promote awareness of FMS and CFS,
by buying
DVDs and CDs of OFFER Conferences and Education Meetings,
T-shirts, wrist bands, or turtle jewelry -
a gentle reminder that "slow and steady wins the race"
and we must learn to pace - Order online at:
Thank you for your continuing support!
~~~~~~~~~
Participate in Future CFS or FM Research!
Interested in
participating in future genetic or new research?
and
mail it to OFFER
1002 E.
South Temple, Suite 408
Salt
Lake City, UT 84102
OFFER will
contact you when there's a study that may interest
you;
and of
course, you can choose whether or not to participate.
Your
information is kept confidential.
~~~
"Does a single 25-minute period of moderate exercise have
different effects on people with CFS and FM?"
Researchers
are seeking FM and CFS patients to volunteer for a new study
entitled, "Exercise Effects on Sensory Receptors and Cytokines
in CFS and FM." The principal investigator is Kathleen Light,
Ph.D., of the University of Utah Anesthesiology Department. The
study is part of the University's new Program for Research on
Mechanisms and Treatment of Chronic Fatigue and Fibromyalgia
Syndromes, co-directed by Alan Light and C. Richard Chapman. To
learn about the program's research plans, attend Dr. Kathleen
Light's talk at the Aug. 2 Education Meeting.
For
information about participating in the exercise study, contact
Dr. Lucinda Bateman at
support@fcclinic.com
or (801) 359-7400, or Dr. Andrea White at
andrea.white@health.utah.edu or (801) 573-5387.
~~~
National Data Bank for
Rheumatic Diseases (NDB)
Fibromyalgia Research
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. For more
information go to
Other Support
Groups in Utah
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
~~~
See OFFER's New Web Site
~
See our new online store where we
feature OFFER
educational DVD's and CD's of our past conference and education
meetings-Shirts, and turtle jewelry to remind ourselves to
pace. Don't forget to order an "OFFER HOPE"
wristband, they are great to remind us that to "OFFER
HOPE" to anyone needing it is one of the most important
and meaningful things we can do. Make it your personal mantra!
~
Check out the
"Resource" section for links to many informative
web sites,
and for past issues of E-News. Let us know what you
think about
the new site. We welcome any suggestions and
hope to
have more to OFFER in the future!
~~~
Urgent Call For Volunteers!
more of the
following areas:
~
FREE
Community Arthritis Classes
The Utah Arthritis Program,
the Arthritis Foundation, and TOSH-The Orthopedic
Specialty Hospital present a four-part series on
osteoarthritis.
• An
orthopedic surgeon will present the latest in medical and
surgical options related to osteoarthritis.
• A physical therapist will discuss exercise and lifestyle management options. • A nutritionist will talk about important dietary considerations. • A Utah Department of Health/Arthritis Foundation representative will share information on local arthritis classes and resources.
Schedule, *6:30-7:30 p.m.
LOCATION:
TOSH-The Orthopedic Specialty Hospital
(The building
with the glass pyramid on top)
5848 S.
Fashion Blvd. (300 East) Murray, UT 84107
For more
information, call 538-9340, or visit
www.health.utah.gov/arthritis
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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.