June 2011 e-news link
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Rocky Mountain

CFS/ME & FM Association

June 2011 e-news link
In This Issue
Join RMCFA Facebook!
CFSAC and Lobby Day
Discussion/Support Event
Coalition 4 Fibromyalgia
DSM-5 - Call to Action
News and Views

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CFSAC Recap 

  

Below is highlighted patient testimony from the CFS Advisory Committee (CFSAC) - May 10 & 11th including Speak Up for ME project to bring awareness for young people with ME/CFS 

 

Sophie Thorpe - 15 year old  

ME/CFS patient   

 

Denise Lopez Majano - Mother of ME/CFS patient 

 

Bob Miller - ME/CFS patient 

 

Thank you to all the dedicated advocates that testified during the two day CFSAC meeting  

 

Marly - kids CFSAC

Marly Silverman (PANDORA) and the Speak up for ME Group 

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May 12th was International Awareness Day for NEI diseases.    

Advocates Extraordinaire™ were in full action in Washington DC from May 10-May 13, 2011.

 

In Washington: A total of 37 advocates  from 14 states were part of the PANDORA group in Washington D.C.during Awareness Week for NeuroEndocrineImmune Diseases in Washington DC.

The Advocates Extraordinaire™ joined parents and their children in the May 11
th Speak Up About ME gathering and half day Lobby Day that focused on pediatric cases of ME/CFS and fibromyalgia.   

 

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PANDORA met with the CDC representing RMCFA on May 26th concerning the CDC ME/CFS program. We will have an update soon on Facebook and in the next e-news link issue  

 



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

Officers
President  

Tim Smith

 Executive Director
Mike Munoz    

Thank You for supporting RMCFA

 

Advocate for research

Awareness for understanding

Educate for patient care

Support for hope

meeting


Next Event:

 

Saturday June 18, 2011

Discussion Meeting 

1:15 - 3:30 PM

Meeting Room A at Southglenn Library  

"The Streets at SouthGlenn."

6972 S. Vine Street, Centennial, CO - map

 

   

For More information

RMCFA Announces the
Coalition 4 Fibromyalgia 

C4Fibro logoRMCFA joins five organizations to launch the Coalition 4 Fibromyalgia. The Coalition 4 Fibromyalgia mission is to present a unified voice with common goals and objectives that will improve the quality of life for fibromyalgia (FM) patients and their families.   

 

The Coalition 4 Fibromyalgia will engage and mobilize governmental health agencies, the private bio-medical industry, researchers, health care providers and the public toward finding a cure for fibromyalgia and related NeuroEndocrineImmune diseases. A multi-organization national strategy will change current practices and bring solutions so that fibromyalgia patients can lead productive and healthy lives.

RMCFA is proud to spearhead this effort and would like to thank the PANDORA team for their hard work and dedication to this important project. You can read more about the Coalition 4 Fibromyalgia here  

 

Coalition 4 ME/CFS and RMCFA

Call to Action: DSM-5

 

The American Psychiatric Association (APA) is responsible for issuing the Diagnostic and Statistical Manual of Mental Disorders (DSM). The APA is developing a new version of the DSM, the DSM-5 and is currently holding the second round of public review. The DSM-5 update could have profound implications for ME/CFS and fibromyalgia patients. RMCFA (see here), Coalition 4 ME/CFS, Coalition 4 Fibromyalgia have submitted letters to the APA documenting our concerns with this action.

 

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Vivint

Thank You to everyone that supported RMCFA for the Vivivnt gives back project - We came up just short (24) of the top 20 organizations needed but we will try again this fall in Chase community giving program in the fall. Congratulations to WPI, IACFS/ME, Nightingale Research Foundation & National ME/FM Network who did make it to the next round. Round 2 voting is now open!

   

 News and Views


More Doubt Cast on Study of Chronic Fatigue - Amy Dockser Marcus - Wall Street Journal

Two Studies Examine Syndrome of Fatigue/XMRV - David Tuller - New York Times

Gene expression alterations at baseline and following moderate exercise in patients with CFS and FM - CAA - study abstract 

Florida International University Joins PANDORA as Academic Partner for Future NEI Center
 

The NOW Foundation will present its 2nd annual Victoria J. Mastrobuono Women's Health Award to Nancy Klimas, M.D.
 

CFIDS Association of America launches research website and names new Scientific Advisory Board 

Further Evidence of Immune Dysfunction in CFS Syndrome - Prohealth

Serotonin & Blood Flow in Fibromyalgia & Chronic Fatigue Syndrome - Adrienne Dellwo - About.com

ME/CFS Breakthrough by Interdisciplinary Adelaide (Australia) Research Group using MRI

CFS, Misnamed, Misunderstood, Misdiagosed - Llewellyn King - White House Chronicles
 

Study Finds Skin Itself May Be Ignition Point in Neuropathic Pain - ProHealth
 

IACFS/ME Professional Conference Announced -  Translating Evidence into Practice - September 22-25, 2011 · Ottawa, Ontario, Canada - several fibromyalgia workshops are included

   

Demonstrations in Washington DC and San Francisco - Health and Human Services -San Francisco Chronicle story

 

WATCH: Dr Bell's 25-Year Follow-Up on Lyndonville Outbreak Patients - Prohealth

 


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