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OFFER E-NEWS
November 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
November 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
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Do the thing you fear to do
and keep on doing it... that is the quickest and surest way
ever yet discovered to conquer fear.
Author: Dale Carnegie
~~~
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"Ordinary
riches can be stolen, real riches cannot. In your soul are
infinitely precious things that cannot be taken from you."
Author: Oscar Wilde
~~~
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"The best things in
life
aren't things."
Author:
Art Buchwald
~~~
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“Your beliefs become
your thoughts. Your
thoughts become your words. Your words become your
actions. Your
actions become your
habits. Your habits become your values. Your values
become your destiny.”
Author: Mahatma Ghandi
~~~
“Experience is a hard teacher because she gives the test
first, the lesson afterward. And in the end, it's not the
years in your life that count. It's the life in your years.”
Author: Abraham Lincoln
~~~
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The thing that is really hard, and really amazing, is giving
up on being perfect and beginning the work of becoming
yourself.
"
Author: Anna Quindlen
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“Courage is the ladder
on which all the other
virtues mount.”
Author: Clare
Booth Luce
~~~
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Local Awareness October 2006 Events a
Rousing Success!
OFFER hosted the
"Faces of CFS", a traveling photo
exhibit sponsored by the Center for Disease
Control and Prevention and the
CFIDS Association of America, at the
SALT LAKE CITY MAIN LIBRARY from
OCTOBER 4th thru 7th .
Other related OFFER coordinated
awareness activities included:
On Oct. 4th Kim McCleary,
President & CEO
of the CFIDS Association of America,
and the nation's top CFS
Advocate, spoke at the monthly
OFFER Education Meeting at the Salt
Lake County Complex North Building Council
Chambers (2001 South State Street). Her topic
was: "Advocacy: Working to Conquer CFS".
Kim related her own process in learning to
appreciate the power and leverage of advocating
at the government level in raising awareness for
FM and CFS and in raising funding for research
and public awareness efforts. While the CFIDS
ASSOCIATION has done an outstanding job of
raising over $2 million in private funding,
their government lobbying efforts have generated
more than ten times that amount for research and
public awareness efforts. It has not been easy,
but Kim has shown the kind of impact this
approach to advocacy can have. According to Kim
this approach can be very effective at the state
and local level as well. She gave examples of
what advocates in other states have
accomplished.
On Oct. 5th and 7th two documentary films
about CFS and FM
were shown at the SALT LAKE CITY MAIN
LIBRARY:
* I REMEMBER ME (2000) is
an award winning documentary film about Chronic
Fatigue Syndrome. It is the first full-length
documentary to explore the controversial and
mysterious history of Chronic Fatigue Syndrome.
Filmmaker Kim Snyder interweaves her own
four-year battle with the disease with stories
of others facing the same challenges: soccer
star Michelle Akers and legendary Hollywood
director Blake Edwards (BREAKFAST AT
TIFFANY'S, THE PINK PANTHER). Kim talks to
victims, their families; to physicians and
researchers; asks compelling questions such as:
is it one disease or several; what's the CDC
doing; what's it like to have a disease that's
not yet understood? This film speaks to the
universal themes of loss, human perseverance and
the difficulties in grappling with uncertainty.
* SHOW ME WHERE IT HURTS
(2006) features Patrick B. Wood, MD and
Andrew J. Holman,MD both Fibromyalgia
researchers, and Lynn Matallana, national
FMA (Fibromyalgia Association) founder and
president. The pain of Fibromyalgia is a
daily reality for millions of people. This
video gives a front row seat on some of the
cutting edge research breakthroughs being
made in the fight to conquer FMS. Hear from
patients and caregivers as they reveal how
real strides are being made in our
understanding and treatment of this
mysterious disorder.
On Oct. 7th OFFER held a CFS/FM
Rally on East steps of
the Salt Lake City/County Building then
a "Walk-a-Block" for
CFS/FMS awareness to the Salt
Lake City Main Library (across the
street), followed by the second viewing
of the documentary films
about CFS and
FM. The turnout was excellent
in spite of the rain. OFFER would like
to thank our Master of Ceremonies, OFFER
Board member Joey Foote, for hosting the
rally. Our thanks go to the outstanding
speakers who shared their insights with
close to 200 people with CFS or FM and
their advocates:
Dr.
Lucinda Bateman
operates the Fatigue
Consultation Clinic in
Salt Lake City, is the
founder of OFFER and
current Executive
Director, and serves on
the boards of the CFIDS
Association of America
and the IACFS
(International
Association of Chronic
Fatigue Syndrome). Dr.
Bateman updated those
gathered on exciting
advances in 2006
regarding CFS and FM
research.
Click here
to view Dr. Bateman's
speech.
Attorney Loren Lambert operates
Arrow Legal Solutions,located in Midvale, Utah,
a general practice law firm which places
special emphasis on the rights of those who are
disabled. Loren, who has struggled with the
physical and social consequences of fibromyalgia,
gave an impassioned speech encouraging those
struggling with these illnesses and their advocates
that we must stand up, be recognized, and advocate
for just laws toward insurance industry reforms and
social support systems so those with CFS and FM
will not be excluded.
Click here to view Loren's speech.
Lauren
Allen, a 16
year old who has
suffered with Chronic
Fatigue Syndrome since
she was 12, gave a
moving speech sharing
her journey as a
"normal" teenager
dealing with the
debilitating nature of
the illness. As she so
eloquently proclaimed,
"This illness sucks!"
In a speech reflecting
wisdom and maturity,
Lauren called on
legislators to help
promote and vote for
funding for CFS
research, scientists to
find the cause and a
cure, educated doctors
and nurses to provide
desperately needed
compassionate treatment,
and her community to
understand and support
her. Lauren called for
each of us to "Give me
that hope now, and give
us all this hope for
future generations."
Click here
to view Lauren's speech.
Erin Floyd, a young college
student who has been struggling with Chronic Fatigue
Syndrome for ten years, shared her personal journey
with those gathered and called each of us to action,
to advocate, to seek available resources in the
community and to keep our spirits high as we work
together to gain the awareness and support that is
so richly deserved for those who suffer with these
difficult and misunderstood illnesses. Erin thanked
those who have been so instrumental in supporting
her in her journey.
The Salt Lake Tribune published a great article on these activities. Take a look. Get informed about mysterious illness - The Salt Lake Tribune Thanks goes out to all of the volunteers who made these events possible and so successful! A final and very special thanks goes to OFFER's current Chairman of the Board of Directors, Carol Floyd, who's vision and personal self-sacrifice made these events possible and have raised the awareness of our local community and government.
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OFFER 2007 Conference:
OFFER's 2007
Provider and Patient Conferences have been scheduled. The
Provider Conference is set for all day
Friday, May 4th and Saturday morning May 5th, 2007. The
Patient Conference is set for the
afternoon of Saturday, May 5th, 2007. Please go to the
following link on OFFER's website to see the details regarding
the Provider Conference. If you are a person with CFS or
Fibromyalgia and would like your medical providers to attend
this groundbreaking conference, you can print the flyer and, if
you like, the actual speaker list that is on our website and
give them to your providers so they can pencil in the dates.
Medical providers plan their schedules months in advance, so the
sooner you get this information to your providers the better
chance that they can attend.
The link is:
http://www.offerutah.org/Conference.html
~~~
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 Country Complex North Building
2001 South
State Street, Salt Lake City, UT.
(Park free at
the northeast corner of the complex)
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November 1, 2006
James
Overall, M.D.
President,
Integrative Health Network
"Integrative
Health Approaches"
~~~
December 6, 2006
Stuart
Drescher, Ph.D.
Offer
Board Member
"Panel
Discussion: Attitude and Health"
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.
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IN THE NEWS LINKS:
November 3rd CFS Press Conference Will Be Held at the
National Press Club in Washingtion, DC.
The Center for Disease Control and the CFIDS Association
of America have scheduled a November 3rd press
conference announcing the national CFS public awareness
campaign that will shift into high gear this week.
Click on the link for details:
~~~
NEW! - October 11, 2006
P.A.N.D.O.R.A. announces the International Advocacy Video
Contest on CFS, FM, GWS and MCS.
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CFS: New insights,
new hope - Chronic Fatigue Syndrome
Click on the link below to view the September article in
UTAH Health Magazine authored by Kim McCleary, President and
CEO of CFIDS Association of America:
~~~
Fibromyalgia Fit Tips
Click on the link below to learn the latest Fibro Fit Tips:
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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.
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CDC/CFIDS Campaign to:
"Spark!" Public Awareness Update
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INFO-LINKS
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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
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Young Adults Forum Section, Youth Chat
pediatric education packages for kids with cfs
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Mayo
Clinic's Health Symptom Checker
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How
to Talk to your Health Care Provider
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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.
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Meditation for Fibromyalgia
Would you
like to participate in a research study on whether
mindfulness meditation can help relieve Fibromyalgia
symptoms?
To
qualify to participate, you need to be:
Female
and at least 18 years old
Have a
Fibromyalgia diagnosis from a physician
Be
relatively healthy, other than Fibromyalgia
Be able
to access the Internet from home
For
information about participating in the meditation study,
immediately call (801) 585-7690.
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"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.
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
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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 turtlejewelry -
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!
~~~
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,T-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:
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FREE
Community Arthritis Classes
The Utah Arthritis Program,
the Arthritis Foundation, and TOSH-The Orthopedic
Specialty Hospital present a four-part series on
osteoarthritis.
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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