March 2009

 

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 E-NEWS MARCH 2010 
E-NEWS QUICK LINKS  
 
 
The E-news will be changing its format.  So look for it in the near future!
 

  
OFFER EDUCATION MEETING
 
 
"Chronic Fatigue Syndrome: Experiences of Women during Pregnancy, Childbirth and the Postpartum Period"
Panel Discussion
 
Moderator: Peggy Rosati Allen, CNN, WHNP, MS
 
“Chronic Fatigue Syndrome: Experiences of Women during Pregnancy, Childbirth and the Postpartum Period” will provide a synopsis of expert opinion and the current scientific evidence, albeit scant, that addresses the experience of childbirth in women with chronic fatigue syndrome.  The presentation will include a panel of women with chronic fatigue syndrome who will share their experiences of pregnancy, childbirth, and early parenting. Target audience for this presentation will be women with chronic fatigue syndrome and their families who may be anticipating or have experienced pregnancy, birth, and early parenting.
 
Peggy Rosati Allen, CNM, WHNP, MS is an Assistant Clinical Professor with BirthCare HealthCare, faculty practice for the graduate nurse-midwifery and women’s health nurse practitioner programs with the University of Utah College of Nursing.  She is also the author of “Chronic Fatigue Syndrome:  Implications for Women and their Health Care Providers During the Childbearing Years”, published as a feature article in the July/August 2008 issue of the Journal of Midwifery and Women’s Health.  Peggy was awarded the 2009 Journal of Midwifery and Women’s Health Mary Ann Shah New Author award for this publication, an award sponsored by the publisher Elsevier and the JMWH editorial board given to a first-time published author whose article, among other criteria, makes a significant contribution to clinical practice, policy, education, or research.
 
Wednesday, March 3, 2010 at 7:00 p.m.
 
 
To view the 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.  


 
 



IN THE NEWS LINKS
 
XMRV not detected in Dutch chronic fatigue patients
by Vincent Racaniello on 26 February 2010
 
The CFIDS Association of America reports on the three negative studies of XMRV in CFS
A study published on Feb. 25, 2010, in the British Medical Journal by Frank van Kuppeveld, et al, of the Netherlands did not find evidence of xenotropic murine leukaemia virus-related virus (XMRV) in 32 patients with CFS and 43 matched controls. This study used blood samples collected in 1991-1992 from CFS patients defined by the Oxford criteria. None of the cases or controls tested positive by sensitive polymerase chain reaction (PCR).
 
The Association's scientific director, Suzanne D. Vernon, PhD, has written an analysis of this study and provided some context for the three negative reports of XMRV that have been published in the last 51 days. Please read "Playing A Weak Hand Well" at
 
Third study finds no link between mouse virus and chronic fatigue syndrome
 
Silverman’s golden drug makes him NU’s golden ticket
By Nick MerrillNorthwestern University/ North by Northwestern/ Feb. 25, 2010 at http://www.northbynorthwestern.com/2010/02/63918/silvermans-golden-drug-makes-him-nus-golden-ticket/

 

 
Medical marijuana may help fibromyalgia pain
By Anne Harding, Health.com February 22, 2010
 
Massachusetts Doctor Pleads Guilty to Research Fraud
By RODRIQUE NGOWI
The Associated PressMonday, February 22, 2010
 
New Drug Application for sodium oxybate as fibromyalgia treatment accepted by FDA
 
"Mono" Linked to Chronic Fatigue Syndrome in Teens
By Michelle Rizzo, Reuters published in the Vancouver Sun
 
 


"The starting point of all achievement is desire.  Keep this constantly in mind.  Weak desires bring weak results, just as a small fire makes a small amount of heat."
Author: Napoleon Hill


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 coordinator, Kathleen O’Connor at (801) 587-4741. For more information email kathleen.oconnor@hci.utah.edu or visit our website at:


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 ½ 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.


 
 
INFO-LINKS
 
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
 
 
Develop Coping Skills for Living With Fibromyalgia
Improve Your Life & Your Symptoms
By Adrienne Dellwo, About.com
Updated: February 28, 2009
 
 
Chronic Fatigue Syndrome: The Basics
 
 
Medline 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.  Click here
 
 
OFFERUTAH.ORG Support Board!

The OFFER Support Board should be back on-line shortly.  We have a new volunteer who is currently working out the

final details.  Keep checking back.


Offer's Website
Visit OFFER's web site for additional resources to important health information and CFS/FM research studies at: http://www.offerutah.org under Resources
 
 
 

 
"To be a champ, you have to believe in yourself when nobody else will."
Author: Sugar Ray Robinson


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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: http://www.offerutah.org/daneenakers.htm
 
"New Research and Biomarkers for FMS/CFS" by Kathleen Light, PhD: http://www.offerutah.org/kathleenlight.htm
 


 
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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