This weekly update for the ME/CFS community includes updates on the CDC and CFSAC, victory in California and news related to SMCI.

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Pictured above left to right, ME/CFS Advocate Naomi Edelson, Congressman Jim McGovern, SMCI Director of Advocacy and Public Relations, Emily Taylor
 

New CDC Public Website for ME/CFS

After years of advocacy and a slow revision process, the Centers for Disease Control have released the public component of the new ME/CFS website. These revisions are the result of the participation of over 50 stakeholders in the Technical Development Workgroup (TDW), including SMCI’s Chief Scientific Officer and Vice President for Research, Dr. Zaher Nahle. The section of the website designed for health care providers is scheduled to be released later this summer. We are pleased to see that the new website uses the criteria established by the 2015 Institute of Medicine report and has officially removed Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) from its recommendations. The ME/CFS community has long felt that this old and potentially dangerous information must be removed.  It may be very slow, but advocacy works! See the new website at: Treatment | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC and to learn more about the TDW please visit: http://go.solvecfs.org/e/192652/cal-development-workgroup-tdw-/66ztn/37462945
 

ME/CFS Resolution passes California State Legislature

Three days after passing unanimously out of the California Assembly Committee on Rules, a senate resolution (SCR 40 - Myalgic Encephalomyelitis Awareness Month), has been passed by both houses of the California State Legislature and will soon become state law. Sponsored by Senator Steve Glazer and Assembly Member Catharine Baker, SCR 40 is the 4th state resolution passed in the U.S. on ME/CFS. A special thanks goes to ME/CFS Advocates Mark Camenzind and Marilyn Yu for their work in Sacramento. We are so proud to work with you to pave the way for ME/CFS Awareness in California.
 

What’s going on with CFSAC?

On June 29 and 30, the Federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) met via webinar in the first official meeting of the 2017 calendar year. The meeting barely captured a quorum with, at times, fewer than 3 voting members present as a result of the delayed transition to new membership. This was the last meeting chaired by Dr. Susan Levine who will be replaced in the next two-year term by Dr. Faith Newton as Chair of CFSAC. Stay tuned to our next issue of Research 1st for more in-depth reports and analysis from the meeting.
 

Welcome, Howard!

We are excited to welcome Howard Smith as our new Accounting Manager/Controller. Howard has a diverse background in finance, accounting, and administrative management. He brings many years of experience to oversee SMCI’s partnerships, grant projects, and financial health to ensure we are making the most of every precious donation. Howard has been a C.P.A. since 2012 and received his degree in Economics and Finance from the University of Toronto. To reach Howard, please email HSmith@solvecfs.org

 

Thank You! You Make Our Work Possible.

SMCI is completely supported by gifts from patients, loved ones, and others who understand the devastation of ME/CFS.  We wish to thank the more than 1,600 donors who demonstrated their support for our work by contributing almost $1.79 million to SMCI during our last fiscal year, which ended on June 30. Together, we will make ME/CFS understood, diagnosable and treatable. SMCI is the only medical research organization exclusively dedicated to ME/CFS that also advocates for increased federal support for ME/CFS research. We believe that the best way to serve patients is to solve this debilitating disease by investing in promising research and fostering an environment for scientific collaboration.

The work of SMCI is entirely fueled by gifts large and small from people just like you.
 


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