Research 1st News  | May 2015   
Your free monthly e-newsletter from the Solve ME/CFS Initiative. Please forward to a friend and invite your family and friends to subscribe.
Today marks the first day of a banner month for all of us in the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome community. May 12 is International ME/CFS Awareness Day, when ME/CFS patients, advocates and health care providers from across the globe join together to raise the visibility of this debilitating disease, which has mercilessly stolen the lives and livelihoods of so many.

The Solve ME/CFS Initiative has created a page on our website—SolveCFS.org/May12—that provides a host of ideas on how you can help make an impact on May 12 and throughout the rest of the month.

For those who would like to show their support by contributing to our organization’s research efforts, please go to CollaborateFindSolve.org, where you can make a secure online gift. And if you’ve never given to SMCI before, there is no better time to do so. Thanks to a generous donor with a matching grant challenge, your first-time donation will be doubled up to $20,000 between now and May 30, 2015. So don’t miss this wonderful opportunity to double your gift!

As a patient-centered research organization, the Solve ME/CFS Initiative devotes the lion’s share of our resources to funding research that will make ME/CFS understood, diagnosable and treatable.

Warmest Regards,

Carol E. Head
President
Solve ME/CFS Initiative
SMCI Comment on the IOM Report: "Redefining an Illness"
By Suzanne D. Vernon, PhD


In February, the prestigious Institute of Medicine released its landmark report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.” Dr. Suzanne D. Vernon, SMCI Scientific Director, authored a series of five blog posts breaking down the 304-page report, which is a remarkably thoughtful, evidence-based document that succeeded in giving medical providers a much-needed framework for diagnosing ME/CFS (SEID).

You can access the series here:

Part 1
Part 2
Part 3
Part 4
Part 5

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2015 SMCI Webinar Series Kicks Off

The 2015 SMCI webinar series kicked off on April 17 with a presentation by Dr. Lucinda Bateman: "Will SEID Diagnostic Criteria Improve Diagnosis and Treatment?" To view the webinar, go here

Mark your calendar for the next webinars:

June 18, 1 p.m. EST
Lily Chu, M.D., Co-Vice President, International Association for ME/CFS
"Post-Exertional Malaise: Characteristics and Research Findings"

July 16, 1 p.m. EST
Peter Rowe, M.D., Director, Chronic Fatigue Clinic, Johns Hopkins Children’s Center


October 15, 1 p.m. EST
Alan Light, PhD, Research Professor of Anesthesiology, University of Utah


December 17, 1 p.m. EST
Solve ME/CFS Initiative Year-End Research Review

Stay connected to our Facebook page and blog for registration notification and the link.



SolveCFS BioBank™ Researchers Leading the Way

Several ME/CFS investigators either have published or are preparing manuscripts on their research that use the SolveCFS BioBank™ samples; others have submitted applications to the National Institutes of He
alth based on these preliminary results. 

One of the most recent papers, authored by Dr. A. Alaedini, was published in the highly prestigious journal, Brain, Behavior and Immunity. The paper, “Anti-Neural Antibody Response in Patients with Post-Treatment Lyme Disease Symptoms versus those with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,” found that antibodies to central nervous system proteins were different between ME/CFS patients and post-treatment Lyme disease patients. 

This research points to diagnostic methods to distinguish between these two clinically similar diseases.

To learn more about the SolveCFS BioBank™ and how to enroll as a participant, go to SolveCFS.org/BioBank.
SMCI Research Plan: The Big Picture

SMCI is now in its first year of a five-year research plan, which takes a comprehensive approach to solving ME/CFS. The plan, developed in 2014, reflects the bioinformatics approach, which is the science of collecting and analyzing complex biological data. The overarching aim is to define ME/CFS/SEID through the powerful combination of patient experiences and data from multiple research studies. The plan is ba
sed on a three-step approach:

1. Recruit and engage a large community of ME/CFS patients to participate in research and contribute health information and biological samples through our well-established SolveCFS BioBank.

2.
Work with best-in-class scientists using proven technology to generate molecular data about how genes, viral exposure, immune response and many other factors contribute to ME/CFS/SEID.

3. Collect, integrate and analyze experiential and health information fr
om patients along with their molecular data to define ME/CFS and its subtypes.

By systematically generating, collecting, integrating and analyzing this information, we will move ME/CFS/SEID from a medically unexplained disease, to a disease with molecularly defined subtypes. This infrastructure is critical for developing robust diagnostics and personalized treatments.

To keep up-to-date on all of our research efforts, subscribe to our free print newsletter, the Chronicle at SolveCFS.org/Chronicle.
Suzanne D. Vernon, PhD, Steps Down

Eight years after joining the Solve ME/CFS Initiative (SMCI), Suzanne D. Vernon, PhD, will be stepping down as Scientific Director in late June. She will continue with the organization in a consultancy role for an extended period. SMCI has begun an international search for a Research Director.

As the organization’s first Scientific Director, Vernon played a key role in transforming SMCI into a patient-centered research organization—one that translates donor-funded research into tangible results and progress.

Please consider joining our Sustainers Circle, where your monthly gift ensures our good work can move forward, and we can continue to bring you this free monthly resource! Visit solvecfs.org/donate and get started today.

At the Solve ME/CFS Initiative, we are about turning hope into action. It is donations from people just like you that make progress possible.  
Thank you!