Research 1st News  |  August 2014   
Research 1st News is your free and informative monthly e-newsletter from the Solve ME/CFS Initiative (formerly the CFIDS Association of America). Please forward it to someone you know that may benefit from it.
This summer we are turning up the heat in our quest to solve ME/CFS. As we continue our effort to make ME/CFS widely understood, diagnosable, and treatable we are focused on patient-centered research aimed at identifying safe and effective therapies to eradicate this dreadful and debilitating disease. Our webinar series, now in full swing, can tell you more about the work underway and some exciting results being published. In this issue we also share information about more results coming from the work done through the SolveCFS BioBank in our Research Digest.

I am deeply committed to our evidence-based, research-driven work and am excited about the research we are funding. We know that the road to solving this illness is long and hard. We travel that road together.

As the SolveME/CFS Initiative relies on the generous donations of patients and their loved ones to fund our work, we are especially grateful for your financial support.
Together we can Solve ME/CFS. Onward.

Carol E Head
President and CEO
Research Digest - August: More Results from the SolveCFS BioBank

The Solve ME/CFS Initiative established the SolveCFS BioBank in 2010. Over the past 4 years clinical information and samples from the first 240 ME/CFS patients and 87 controls have been used by more than ten researchers – most new to ME/CFS research. Right after we established the SolveCFS BioBank, Science magazine published the results that described a new virus in ME/CFS patients called XMRV. This research caught the attention of many scientists and the pharmaceutical industry - immediately investigators needed samples to try to further these XMRV results.

The timing was perfect for the then-new SolveCFS BioBank. In collaboration with GlaxoSmithKline (GSK) and four expert ME/CFS physicians, the SolveCFS BioBank collected information and samples from ME/CFS patients and healthy controls. We are pleased to now report the publication of this SolveCFS BioBank “founding” study and some of the results from the first study of epigenetics in ME/CFS. Both used the clinical information and samples that were collected in 2010 through the SolveCFS BioBank.

2014 Webinar Series!

The Solve ME/CFS Initiative (SMCI) is bringing you a free, monthly webinar. Don't miss this chance to get cutting edge research updates directly from our funded investigators!

Research Institute Without Walls – Progress & Promise
Held on July 31

Patrick McGowan PhD: Epigenetics of ME/CFS
Held on Aug 21

Dane Cook PhD: Deciphering Post-Exertional Malaise
Thursday, September 18

You must RSVP to participate live and anyone is welcome.
Each webinar will be recorded and posted to our website and YouTube channel within a week of the live date, so if you miss it, don’t worry! You can still have access to the great information at your convenience.

Guest Blog: Roger Dodd, PhD - Retrovirus Testing in Retrospect
In response to some lingering questions we recently received from patients concerning a positive test result for XMRV, Roger Dodd, PhD, Vice President of Biomedical Services Research and Development at the American Red Cross and SCMI Research Advisory Council member, provides this guest post on retrovirus testing and why ME/CFS patients need not be concerned with a positive XMRV test result...
CFSAC Charter up for Renewal
Every two years, the charter for the Chronic Fatigue Syndrome Advisory Committee (CFSAC) must be renewed. With the last renewal being filed September 5, 2012, the charter is again up for renewal. 

SMCI understands the importance of having a federal advisory committee focused on issues related to ME/CFS and so on August 1, 2014 we wrote to the Secretary of Health and Human Services urging her to renewal the CFSAC charter.

CDC Stakeholder Call - Open Invitation 
CDC announces CFS Patient-Centered Outreach and Communications Activity (PCOCA) Conference Call, open to all on September 9, 3pm EST

The main topic on this call will be "Can ME/CFS and FM Sleep Research Help You Sleep?" presented by Lucinda Bateman MD. 

Did you know that the Solve ME/CFS Initiative is funded entirely by individuals who choose to make a difference for patients afflicted with this debilitating illness? We count on people like you to support the progress of our Research Institute Without Walls and our SolveCFS Biobank. In fact, we can’t do it without you.

No gift is too big or too small. You can make a difference now by visiting and making a contribution to our Annual Campaign.

Your support brings hope to patients who are suffering, and makes a real difference in solving ME/CFS.  

Thank you for making a difference in the lives of those suffering from ME/CFS!