March 2011 e-news

Newletter Archive | Event Archive

 

RMCFA logo

Rocky Mountain

CFS/ME & FM Association

March 2011 e-news link
In This Issue
Join RMCFA Facebook!
Volunteers needed
Important Dates
Good Reading List
Discussion/Support Event
RMCFA Joins Coalition 4 ME/CFS
CDC Meeting Scheduled
News and Views
Join RMCFA on Facebook

Find us on Facebook

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

 _______________________________
 


We need Volunteers:

 

We are looking for a communications and meeting coordinator volunteers.

 

If you have experience with public relations and/or written communications

or 

 

you have experience with organizing and facilitate meetings and would like to help. 

 

Please contact us at info@rmcfa.org

 

  

____________________________


Important Dates Upcoming:

 

nihApril 7-8

State of the Knowledge Workshop on ME/CFS Research - this will include two patient representatives

 

May 10-11 

CFS Advisory Committee  

(CFSAC) Meeting

 

Speak Up About ME

RMCFA sponsored event

  Young people with ME/CFS

 

lobby day posterMay 9-13  

ME/CFS & Fibromyalgia Awareness -

 Lobby Day

/Month  

Washington DC  

 

   



Please Donate!

Your donations make

our work possible


donate

 
 

_______________________________
Good Reading List

 

snail bookThe Sound of a Wild

Snail Eating

 

by Elisabeth Tova Bailey   

  

_____________________

  

A Sudden Illness

How My Life Changed

Essay by Laura Hillenbrand
 The New Yorker  

© Copyright 2003  

_________________________________

Tell Congress to Preserve the Charitable Deduction

Organizations like RMCFA rely on donations from individuals to maintain their programs. Please tell congress to preserve the charitable deduction
____________________________

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
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, April 16, 3:30 - 5 PM

 Discussion/Support Event 
Englewood City Center Library - Perrin Room 

1100 Englewood Parkway - Map

 

 

For More information



 RMCFA Joins Coalition 4 ME/CFS

The First US ME/CFS Coalition

 

The Rocky Mountain CFS/ME & FM Association (RMCFA press release) and seven organizations have formed the first

US coalition to serve their patient community and change public policy. The  Coalition 4 ME/CFS is the first national project of a network of organizations addressing the plight of the ME/CFS and fibromyalgia communities.  

      

The Coalition 4 ME/CFS mission (press release) is to present a joint national strategy with common goals and objectives that will improve the quality of life for patients and their families. This professional collaboration will strengthen its member organizations, promote resource-sharing, encourage networking and provide leadership training. Great read from our partner Coalition member PANDORA - Why join a coalition 

 

   

   

CDC Meeting scheduled
Take Action-Survey!

 

In December 2010, Elizabeth R. Unger, Ph.D., MD, was appointed to serve as chief of the U.S. Centers for Disease Control and Prevention's Chronic Viral Diseases Branch (CVDB), the branch responsible for the ME/CFS Research Program at the CDC. This action made official replacing her "acting" title.

 

A letter, signed by RMCFA and nine other patient organizations and patient advocates, was sent to Dr. Elizabeth Unger asking for a meeting to discuss how to develop future dialogue with patient organizations.  Subsequently, a petition was issued to notify administrators and directors at the CDC that their attention was needed to address the issues in the letter. Soon after Dr. Unger responded and  that she wants to establish venues to restore trust and will discuss the nine action points listed in the letter and petition.

 

We'd like to ask for your participation in an online survey hosted by PANDORA ranking the importance of nine action points to be discussed with Dr. Unger in May. Let your voice be heard loud and clear by participating in the quick and easy survey

 

The Time is Now!

 
---------------------------------------------------------------------------- 

Your Voice is needed
Public Service Announcements

The MCWPA team is pleased to announce that five entries

have come in for the public service announcement contest.
They are inviting patients to go to the Patient Discussion Board and give their feedback between now and April 3 at midnight EST. Vote to come later. 


 

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. 

 

 News and Views

 

Lots of big news and press coverage  

this month... 

 

Proteins found in spinal fluid may lead to biomarker - stories below:

Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome - PLoS ONE abstract

Evidence surrounding Chronic Fatigue Syndrome - Spinal fluid proteins finding - CBS Early Show video

New study on Chronic Fatigue Syndrome - CBS Evening News with Katie Couric - video

A Step Closer to Tests for Chronic Fatigue Syndrome and Lyme Disease - Amy Dockster Marcus

New Center of Excellence:

Stanford University and Dr. Montoya has launched CFS center of excellence initiative - website

Wall Street Journal Articles:

Unlocking Chronic Fatigue Syndrome - Amy Dockster Marcus - This article was featured in the print edition WSJ Personal Journal section

The Puzzle of Chronic Fatigue - Amy Dockster Marcus

Rural NY Town Becomes Chronic Fatigue Laboratory - Jason Bellini - Must see video complimenting "The puzzle" article above

Amid War on a Mystery Disease, Patients Clash With Scientists - Amy Dockster Marcus  - This article was featured on the front page of the WSJ.  

Chronic Fatigue Syndrome in the Spotlight - Katherine Hobson

An Illness That's Hard To Live With-Or Define
Dr. Lenny Jason

XMRV and the Blood Supply: More Study Needed
Amy Dockster Marcus

XMRV: Study Shows Virus Can Cause 'Persistent Infection' in Monkeys - Amy Dockster Marcus

New York Times Article:  

Defining an Illness Is Fodder for Debate - David Tuller - featured in the NY Times printed edition health section  

Other:

 

National Fibromyalgia & Chronic Pain Association (NFMCPA) launches

KRFC Radio Interview about ME/CFS and XMRV - Ft Collins Co - w/Tina Tidmore - MCWPA/PANDORA

Dr. Lapp on XMRV & Ampligen - Information that may "change the field of medicine forever"

Living well: Help for fibromyalgia - FOX 25 Morning News video

A brain MRI study of chronic fatigue syndrome: Evidence of brainstem dysfunction and altered homeostasis - ProHealth

OFFER launches Youtube channel for educational videos - It will feature their monthly CFS & FM educational meeting videos

 

 
   

 


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