July 2010
E-NEWS QUICK LINKS
 
OFFER Education Meeting


 
OFFER EDUCATION MEETING

 
"Group Discussion"
 
by Stuart Drescher, PhD
 
Wednesday, July 7, 2010 at 7:00 p.m.
 
During these group discussions, Dr. Stuart Drescher, a licensed psychologist and ME/CFS patient, will introduce themes pertinent to ME/CFS and Fibromyalgia patients.  He'll then ask those in attendance about their experiences and how they deal with these illnesses.  These will be positive, supportive meetings.  They will not be filmed to respect privacy concerns. 
Plan on attending!

Upcoming Education Meetings:

August 4 - Group Discussion led by Dr. Stuart Drescher

September 11 - OFFER Conference
 
To view the remaining 2010 Education Meeting Schedule, click here.
 
 
Location: 
Salt Lake County Complex, North Building, 2001 S. State Street, SLC, UT.
Park in the northeast corner of the complex.
 

UPCOMING OFFER CONFERENCES: SEPTEMBER 11, 2010
 
***Save the Date***
 
Saturday, September 11, 2010
 
OFFER (Organization for Fatigue and Fibromyalgia Education and Research)
invites you to attend our conference:
 
ADVANCES IN THE SCIENCE AND TREATMENT OF
CHRONIC FATIGUE SYNDROME AND FIBROMYALGIA
 
for Healthcare Providers and Patients
 
Marriott Salt Lake City Downtown
75 South West Temple
Salt Lake City, UT 84101
(801) 531-0800
 
HEALTHCARE PROVIDER CONFERENCE
 
Saturday Morning, 8:30-12:30 am
 
Patrick Wood, MD. “Fibromyalgia: Advances in Theory and Practice”
 
Ila Singh, MD , PhD. “XMRV and human diseases: Prostate Cancer and Chronic Fatigue Syndrome”
 
Suzanne Vernon, PhD. “Science-Based Medicine: Biomarkers for the Objective Diagnosis and Treatment of CFS”
 
Expert Panel Discussion: FM/CFS Treatment Strategies: N. Lee Smith, MD, Lucinda Bateman, MD, Patrick Wood, MD, Ila Singh, MD, Phd, Stuart Drescher, PhD, Paul Shepherd, PhD
 

PATIENT EDUCATION CONFERENCE
 
Saturday Afternoon 1:00-4:00 pm
 
(Vendors 12 noon – 5:00 pm)
 
Lynn Matallana. `“The Treatment of Fibromyalgia: The Need for Patient/Physician Collaboration”
 
Suzanne Vernon, PhD. “Science-Based Medicine: Biomarkers for the Objective Diagnosis and Treatment of CFS”
 
Lucinda Bateman, MD. ”The Utah Connection:  Amazing local contributions to big time FM and CFS research"
 
For more information and to register, please visit the OFFER website: www.offerutah.org
 
To request conference brochures, please email mindi@offerutah.org
 
Volunteers are needed to assist with the conference.  If you would like to volunteer, please click here.
 
Over the past several years, OFFER has conducted conferences to educate both healthcare providers, patients, caregivers, and others interested in learning more about these debilitating illnesses.
 



 
"Men are not prisoners of fate, but only prisoners of their own minds."
Author: Franklin D. Roosevelt



IN THE NEW LINKS
 
Chronic-Fatigue Link to Virus Disputed
FDA and NIH Research Group Finds Virus XMRV in the Blood of Syndrome Sufferers, CDC Does Not; Papers Held From Publication
Wall Street Journal / Health
June 30, 2010
 
Controversy Continues on Whether XMRV Retrovirus Contributes to Chronic Fatigue Syndrome
Kathleen Louden
17 June 2010
Medscape Medical News (Membership required to view article)
 
CFIDS Association of America Webinar on July 15th Features OFFER Board Member and Executive Director Lucinda Bateman, M.D.
Columbia University virology professor Vincent Racaniello, PhD, and Lucinda Bateman, M.D., an expert clinical researcher, team up for a webinar on XMRV on July 15 at 12:00 P.M. (EDT).  Dr. Racaniello is host of the popular podcast "This Week in Virology" and Dr. Bateman is a collaborator on a University of Utah study of XMRV in CFS.

Noon Live Chat on XMRV and Chronic Fatigue Syndrome
Trine Tsouderos and James Janega
Chicago Tribune June 9, 2010
 
Establishing "Disability" For Claimants with Fibromyalgia and Chronic Fatigue Syndrome
24-7 PressRelease
June 26, 2010
Go to:  http://www.24-7pressrelease.com/press-release/social-security-disability-and-fibromyalgia-158003.php
 
Latest Research on CFS - Video
A Lecture by Dr. Anthony Komaroff
April 24, 2010
Massachusetts CFIDS/ME & FM Association
 
Dr. Charles Lapp & Hunter-Hopkins Center Now on Facebook
June 16, 2010
 
Understanding Restless Legs Syndrome
It's real, and it's been linked to increased hypertension, stroke, erectile dysfunction, higher death rates from kidney disease, and possibly Parkinson's disease and fibromyalgia.

 

 
"When you know that you're capable of dealing with whatever comes, you have the only security the world has to offer"
Author: Harry Browne


CURRENT PATIENT STUDIES
 
Participants Wanted for Study of Chronic Fatigue
 
Individuals who have had severe, unexplained fatigue for at least six months and who have no serious abnormalities on medical tests are wanted for a study of chronic fatigue.  Patients who qualify for the study will be asked to complete three questionnaires over a six month period.  Participating in the study will not alter the treatment that your physician gives you.  The purpose of the study is to evaluate whether patients treated by certain types of physicians improve faster than patients treated by other types of physicians.
 
If you may be interested in participating in this study, please contact the study coordiantor, Kathleen O'Connor at (801) 587-4741.  For more information email kathleen.oconnor@hci.utah.edu.
 
Fibromyalgia Treatment Program
 
Researchers in the Department of Anesthesiology at The University of Utah are seeking individuals interested in participating in a clinical study to evaluate rehabilitation programs for treating Fibromyalgia.
 
If you:
* Have been diagnosed with Fibromyalgia Syndrome
* Are between 21 and 65 years of age
* Do not exercise regularly (less than 30 minutes per week)
 
You may be eligible for this study.  This study includes evaluations and 10 consecutive weekly, 2 1/2 hour treatment sessions.  All evaluations and treatments are at no cost to you.
 
If you are interested, please call The Pain Research Center at 801-585-7697 or visit our website at: www.painresearch.utah.edu/clinical
 
Please help Break the Chain on Pain
 
New Fibromyalgia Clinical Trial for Patients
 
The Fibromyalgia Research Team at the University of Utah School of Medicine's Pain Research Center is beginning a new clinical trial on Fibromyalgia patients.  We are currently recruiting participants for a nutrition and weight management study.
 
The Fibromyalgia Research Team has been awarded a National Institutes of Health grant to provide nutrition and coping education for symptom and weight management for overweight or obese Fibromyalgia patients.  We are recruiting participants who have been diagnosed with Fibromyalgia syndrome, are between the ages of 21 and 65, and have a Body Mass Index of at least 25.  Eligible patients will undergo pre and post treatment evaluations and will receive 12 weeks of treatment at the University of Utah Pain Research Center.  The treatment will be in a group format and will be provided at no cost.
 
If you have any questions or would like additional information about this study please do not hesitate to contact Mark Herrera at (801) 585-7692.
 

 
"When we do the best we can, we never know what miracle is wrought in our life, or in the life of another."
Author: Helen Keller


INFO LINKS
 
"Pharmacological Treatment of Fibromyalgia:  The Good, the Bad, and the Ugly"
N. Lee Smith, M.D. - VIDEO
June 2, 2010
 
OFFERUtah.org Support Board!
The Offer Support Board has been revamped with entirely new and very gifted management.  Go to the OFFER website and click on "Support Group" or go to: www.offerutah.org/supportboard/index.php.  This is a wonderful upgrade from previous support board attempts.
 
OFFER'S Facebook site
OFFER Utah is in the process of setting up a Facebook site.  Check the OFFER website for more information.
 
OFFER's Website
Visit OFFER's website for additional resources to important health information and CFS/FM research studies at:  www.offerutah.org under Resources.
 
The National Fibromyalgia Association has established a healthcare provider information page
Several Utah doctors and others in the Intermountain area have been listed.  To see the list, it's necessary to register with The National Fibromyalgia Association, but it's free of charge.  Here is the address:
http://www.fmaware.org/site/PageServer?pagename=resources_hcProviderDirectory
 
Developing Coping Skills for Living with Fibromyalgia
Improve Your Life & Your Symptoms
by Adrienne Dellwo, About.com
Updated: February 28, 2009
Go to:  http://chronicfatigue.about.com/od/copingwithfmscfs/a/copingskills.htm
 
Chronic Fatigue Syndrome: The Basics
By: Lara Endreszl
Published Sunday, 28 December 2008
Go to: http://www.healthnews.com/family-health/chronic-fatigue-syndrome-the-basics-2346.html
 
Medicine Plus: Fibromyalgia Tutorial
 
Check out this Website for Men with Fibromyalgia
Here's a great site for Men with Fibromyalgia.  Spouses or SO's of Men with Fibromyalgia are also welcome.  Very interesting. 
 

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"Make each day useful and cheerful and prove that you know the worth of time by employing it well.  Then youth will be happy, old age without regret and life a beautiful success."
Author: Louisa May Alcott


IF YOU HAVEN'T EXPLORED THE OFFER 2008 PATIENT CONFERENCE VIDEOS NOW ON OFFER'S WEBSITE, HERE ARE A COUPLE OF GREAT PRESENTATIONS TO START WITH:
 
 "Living with Fibromyalgia" by Daneen Akers:
 
"New Research and Biomarkers for FMS/CFS" by Kathleen Light, PhD:


IF YOU HAVEN'T CHECKED OUT THE NEW OFFER WEBSITE YOU'RE IN FOR A TREAT!  IT HAS ADDED NEW INFORMATION AND LOTS OF VIDEOS FROM OFFER'S CONFERENCES AND EDUCATION MEETINGS!



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You can notify your friends to sign up for the E-news by forwarding this email or send them the following link:  http://www.offerutah.org/enews%20signup.htm
 


 
"The most important thing in life is to stop saying "I wish" and start saying "I will."  Consider nothing impossible, then treat possibilities as probabilities."
Author: David Copperfield






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