December 2010 e-news

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Rocky Mountain
CFS/ME & FM Association
December 2010 e-news link
In This Issue
Your Story
Laura Hillenbrand
2010 Donars
Meeting Schedule
Patients Rise Up!
Tina Tidmore
News and Webinars
Join RMCFA on Facebook

Find us on Facebook

Please come and join us!
Come on over and join in the conversation.


__________________________
 
Your Stories

Dean Taylor
Ph.D, Song Writer CFS Patient


"Wow, CFS has been a life-changer. I can't work or exercise and I had to quit almost everything and severely limit everything else."

"Since CFS forces me to spend most of my day inside my apartment, sitting in a chair, trying not to do anything, songwriting gives me something to think about. I go over lyrics and melody ideas in my head."

Read Dean's story here


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

_______________________
 Laura Hillenbrand is "Unbroken"
Hillenbrand
Laura Hillenbrand's new book "Unbroken" has brought much attention to ME/CFS the past month. She has been the subject of more than 12 interviews (Today show) since the book was announced. None more moving than the Washington Post article by Monica Hesse. Hillenbrand, who took seven years to write Unbroken and can not leave her home to do interviews, has Unbroken on several best sellers lists. Louis Zamperini, the subject of Unbroken, said "I sent her one of my Purple Hearts, I told her you deserve this more than me." Zamperini  was an Olympic runner whose dreams of breaking the four-minute mile were shattered when his B24 bomber crashed in the pacific ocean and faced a devastating incarceration in a Japanese war camp. 

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Thank You!

We would like to thank all the 2010 donors. You are all heroes to us. What you give makes our work possible! We sincerely THANK YOU!

2010 Donors

 


Please Donate!
Your donations make our work possible

 Donate here

 

___________________________
Join Our Email List
Email:  
Contact:

:: www.rmcfa.org

::
link@rmcfa.org

:: 303.423.7367

:: 303.4.CFS. FMS


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

Officers
Tim Smith-President
Jane Wallace-Treasurer

 
happy holidaysa
Happy Holidays!

from everyone at
RMCFA

 
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
WPA logo
Patients Run First-ever Ad in The Washington Post
 
The ME/CFS Worldwide Patient Alliance and RMCFA ran a 1/2 page ad in the Washington Post on December 6th..

This starts a new era of patient backed advocacy. We will fight for awareness and research for these devastating illnesses.


You can make a difference! - How you can help:
 
We would like to thank everyone at MCWPA that work so hard on this campaign to make it a success! Also the donors who gave generously. It would not have happened without you!
 

 Unite to Fight!tina

Patient Advocates Making a Difference...

Tina Tidmore is PANDORA's Director of Communications, an administrator with The Worldwide Patient Alliance (MCWPA) and ME/CFS/FM patient (2003).
 

Tina's career before ME/CFS included newspaper reporter and editor brings an important element to advocacy and awareness efforts. Gradually, she was unable to hold down a corporate job, having to work from home in reclining position most of the time. Tina discovered advocacy by posting on message boards and chat rooms."I started commenting on the actions of patient organizations, government health agencies and researchers and their studies. She is now a mainstay at PANDORA and MCWPA. "My deepest fulfillment is when we help a patient or when a patient donates their time to help us."

 

MCWPA, a collaboration of Tina's and Marly Silverman, was born out of the need to bring print and video media to the advocacy effort. "This ad campaign is a plan to build, build and build pressure, as the AIDS activism did in the 1980s" This week MCWPA rolled out the first campaign, issuing a press release and placing a half page ad in the Washington Post. The effort marked the first ever ad campaign for ME/CFS. "The point of this effort is to be patient-driven, with major decisions made by patients using today's technology, It also depended on patient donations and patients volunteering. Patients did donate bringing in over $12,000 within a few short months. The campaign was reported all over the world and brought attention across Facebook and other social based media.

 

"We need the research; we need patients who can explain that research; we need the lobbying; we need the "good cop and bad cop. I hope the end result will be greater than the sum of its parts."
 

You can read the complete article on our website
 
Please let Tina, Pandora, and the team at MCWPA know how much we appreciate their work.

 
News and Webinars...

News:


Invisible' Patient Activists Whipping Up Media Attention - Prohealth


American Red Cross has banned CFS patients from donating blood - Wash Post article here. ARC statement here - ARC Handout here

 

Elevated Protein in FM shows it's not depression -  Fibro Network

 

Elevated Inflammatory H Pylori  Found in FM Patients- Prohealth

 

Of Mice and Men  - The X-MLV's and XMRV - Cort Johnson 

 

Validation in a Virus? - Newsweek

 

FDA Blood Products Advisory Committee Meeting - December 14th - Nine presentations on XMRV & related MLV's

 

Thyroid autoimmunity predisposition for the development of FM? ProH

Chronic Fatigue Syndrome Patients Grow Weary of Doubt - ABC 

What About Me Documentary trailers

Seeking New Blood-Supply Test - WSJ


Educational Webinars:

CAA's Managing Orthostatic Intolerance 

Speaker: Peter Rowe, M.D. 

CAA's
Treating CFS & FM: The Stepwise Approach
Speaker: Charles W. Lapp, M.D. 

CAA's
Minimizing Relapses: Pacing Yourself Through the Holidays
Speakers: Dr. Bruce Campbell and Dr. Dane B. Cook

 
   

 


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