January 2011 e-news

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Rocky Mountain

CFS/ME & FM Association

January 2011 e-news link
In This Issue
Survey Results
Your Story - Tanja Bugas
Event at NJH
Take Action!
Pat Fero & Unite To Fight
News and Views
Join RMCFA on Facebook

Find us on Facebook

Please come and join us!
 
Updated everyday with current news and community events

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Survey Results

 

Thank you for participating

 

A brief summary of the results: 

 

112 people responded to our survey - 76% were women and 23% were men. 65% were over the age of 50 and 81% live in Colorado. The majority responded that they were at least somewhat disabled with 89% have been ill for more than 5 years. Approximately 38% of respondents were interested in CFS only, 21% are interested in FM only with 41% interested in both FM and CFS. 53% have attended at least one RMCFA event. 29% did not know about our Facebook community. Some did not respond to all questions.

To see much more, you can see the survey results in it's entirety here
 


 

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Your Stories

Tanja Bugas

 

Tanja

I had heard the saying so many times - "when you lose your health, you lose everything."  It wasn't a statement that I needed to take seriously until CFS entered my life at age 32.  Little did I know that 24 years later I would still be battling this terrible, mystery illness only to find almost no help or concern by the government or the medical community.

 

In 1987 at age 32, I began to have difficulty with extreme and after a year of increasing body aches, disabling fatigue, cognitive problems, flu-like symptoms, digestive problems, and insomnia, I was diagnosed with Fibromyalgia.  The rheumatologist told me that I should continue to exercise, that it was "good for me." .  I tried every therapy that was presented to me while I sought regular medical care - both traditional and alternative. One day after reading an article in Hippocrates magazine (July/August 1987) called "The Raggedy Ann Syndrome" I finally knew what was really wrong with me; it had a name, Chronic Fatigue Syndrome.

 I share my story in hopes that there is strength in numbers and others will speak out. Or, as Dr. David Bell tells us, "patients need to yell and scream otherwise nothing will change."  I have and will continue to speak out at every opportunity.  Thank you for reading my story. 
 

Read Tanja's complete story here  

 

We want to from you!
Please share your story
contact Mike Munoz at mmunoz@rmcfa.org

 



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Join Our Email List
Email:  
Contact:

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:: 303.4.CFS. FMS


__________________
RMCFA Board of Directors
 
Paul Haines
Kitty Sherback
Tim Smith
Stacey Townsend
Jane Wallace
Mike Munoz

Officers
President
 
Tim Smith

 Communications Director
Mike Munoz
 


 

 

Thank You for supporting RMCFA


Advocate for research

Awareness for understanding

Educate for patient care

Support for hope

 

dean

Next Event:

 

Saturday -  February 5, 2011

 

"Rise Above:  an Interactive Music Event" with Denver Songwriter-Producer Dean Brantley Taylor

The event will be at Heitler Hall
National Jewish Health


For More information


Take Action!

Patients will be Invisible No More 

 

CDC Chief announced... Call To Action

Elizabeth R. Unger, Ph.D., MD, has been named to serve as the Chief of the Chronic Viral Diseases Branch, of the CDC. (Article with reaction to the announcement) RMCFA has joined PANDORA and nine other organizations to notify Dr. Unger that we expect significant change under her leadership. We are also taking additional steps to be heard. We encourage you to read and sign the petition to let the CDC directors know that we expect change. (see list on petition) This effects both ME/CFS & FM patients. The Time is now!

 

MCWPA Ad Campaign Continued Success

A picture of ME/CFS patient Jan Laverick was displayed in Times Square - New York City. Her photo was also included in the December 6th press release that accompanied the Washington Post ad. The words with the picture show "ME/CFS patients will be invisible no more". We will also be reporting more news in the near future resulting from the campaign.   

 

Good News from the NIH!

Dennis ManganTwo patients advocates  have been selected to the NIH Steering committee State of the Knowledge Workshop on ME/CFS Research April 7-8, 2011.  The patient representatives will be Pat Fero (see story below) and Mary Schweitzer (both supported by RMCFA). Also included on the panel, Dr (s). and advocates Nancy Klimas, Lenny Jason, and Ken Friedman so patients concerns will be well represented. We would like to thank Dr. Mangan, Senior Research Advisor - Office of Research on Women's Health, NIH for recognizing the importance of this effort and including patients representatives.

 

It is time for action! We ask you to get involved...
Please visit the Action Center and our Facebook page for continued updates of how you can help. 

 


Unite To Fight!
Patient Advocates Making a Difference
 

Pat Fero

Executive Director

Wisconsin ME/CFS Association, Inc.

 

Pat Fero

Before I became too sick to work, I was an "at risk" high school teacher. I spent 10 years creating programs and working with kids who learned self destructive behaviors to get some attention in families where violence was normal and good role modeling absent.

 

I was a "disabled too sick to work" person collecting disability. I felt less able to be an equal in the eyes of others. I was a  person with a "mysterious illness"  a group more commonly known as the invisibly ill.

 

In 1987, I co founded the Wisconsin Chronic Epstein Barr Virus  (CEBV) Association.  We had an active board with numerous activities underway.  By the mid 90's, we set up a WI support network with 27 CFS groups meeting monthly

 

In 2003, something about National Institutes of Health ( NIH) Funding caught my attention, so I set about looking at the number of grant awards made to CFS researchers. With so little money and so few new grants per year awarded, how could we, the patients, expect to have better treatment in our lifetime?  From 2004 through 2010 I went to Washington to give  testimony to the Chronic Fatigue Syndrome Advisory Council CFSAC) about lack of funding. In 2010, I finished a 10 year summary of NIH CFS funding patterns. The results are dismal. (see Pat's recent CFSAC testimony - speaker 7 afternoon session)

 

My son died suddenly in 2005 of Viral Myocarditis.  He is among many NOT reported as a death due to or related to CFS because CFS is not a reportable illness and is not considered life threatening.

 

Recently, I was one of two patients to accept a nomination as a patient advocate for a Steering Committee. This group has been working to create an agenda for the State of the Knowledge Workshop to be held on the NIH campus April 7 and 8, 2010. I felt honored to be nominated by so many people across the country and it may well be that I will have the opportunity to speak at one of the sessions. If I do, you can be sure that I will do the best I can to represent YOU.

 

Lastly, I KNOW we are finally moving forward with the science and with patient advocacy. I hope you realize that YOU are pushing an agenda called ACT NOW. Every letter you send to a political representative may be answered with a canned response, but our collective voice matters.  WE CAN change the dynamic that enables our vulnerability and invisibility. Stand firm. Support RMCFA any way you can.     

 

Read Pat's complete story here

 

 News and Views

 

2011: A Look at the Year Ahead For ME/CFS

Cort Johnson

 

Exhausted by Illness, and Doubts

D. Tiller - The NY Times

 

Myofascial Release for Fibromyalgia Pain & Other Symptoms Adrienne Dellwo - about.com

 

Physician Attitudes about Fibromyalgia
Fibro Network

 

CAA recap of four papers released on XMRV published in Retrovirology

 

XMRV: Raising the Issue of Contamination

Amy Dockser Marcus - WSJ

 

Laura Hillenbrand - Interview

Sports Illustrated

 

FDA panel: Patients with CFS barred from donating blood Amy Dockser Marcus - WSJ

 

XMRV: Testing the Blood Supply 

Amy Dockser Marcus



 

Webinars and Videos:
 

CAA's Update of Blood XMRV Working Group Activities

FDA Blood working group on XMRV Phase 2

 

Donnica Moore talks blood donation, CFS & XMRV on
Good Morning America

Annette Whittemore and Judy Mikovits Of WPI
Nevada Newsmakers 12/22/2010 - YouTube

 

CFS and the CDC on Primetime Live (1996)

Remembering Skye Dailor, the outbreaks,  

and how little has changed at the CDC.  

 
   

 


   Rocky Mountain CFS/ME & FM Association   |   303-4-CFS-FMS  ( 303-423-7367 )