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February 2016

RESEARCH 1ST NEWS | FEBRUARY 2017


Dear Friends,

On January 27, the National Institutes of Health (NIH) posted two competitive funding opportunities: one for collaborative research centers (CRCs, U54) and another for a data management and coordinating center (DMCC, U24). This was followed by a call with the ME/CFS community in which Dr. Koroshetz, the director of the National Institute of Neurological Disorders and Stroke (NINDS), described the intent, magnitude, and scope of these new funding opportunities alongside key officials at the Trans-NIH Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Working Group. For years now, the ME/CFS community has been vocal about the need for a tangible commitment from...READ MORE

Yours,

Zaher Nahle
Chief Scientific Officer and Vice President for Research 
Solve ME/CFS Initiative

RESEARCH ROUNDUP

Introducing the Common Data Elements Working Group

The National Institutes of Health (NIH), in partnership with the Centers for Disease Control and Prevention (CDC), has recently launched the Common Data Element (CDE) Working Group with the intent to streamline medical and research terminology in ME/CFS. The ultimate goal of this ambitious project is to standardize the collection, analysis, and comparison of data across multiple research studies. CDEs are becoming a foundational requisite in biomedical research in any field, and this is especially true for a disease where confusion regarding case definition, inclusion criteria, and study design continue to exist.
 

TO READ MORE, GO HERE.

Attend Our March Webinar with Dr. Peter Rowe

SMCI is pleased to announce our first research webinar of 2017. On Thursday, March 16, we will welcome Dr. Peter Rowe to discuss pediatric/adolescent ME/CFS and neuromuscular strain, among other topics. Director of the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center and a professor of pediatrics, Dr. Rowe is also a member of SMCI’s Research Advisory Council. To register for this webinar, go here

Our webinar series, which features thought leaders from academia, industry, and government agencies, is always free of charge and usually takes place once a month on Thursdays at 10:00 AM PT/1:00 PM ET (unless otherwise specified).

Dr. Nahle Brings ME/CFS to UCLA Metabolomics and Bioenergetics Conference

Continuing to build collaboration with medical centers and prominent institutions to promote the ME/CFS agenda, Solve ME/CFS Initiative Chief Scientific Officer and Vice President for Research Dr. Zaher Nahle participated in a day-long conference and workshop at UCLA on January 12. This meeting focused on metabolomics and bioenergetics and their integration into the study of metabolism and complex diseases. Speakers at the conference included prominent UCLA faculty members and biotech representatives. During the visit, Dr. Nahle met with conference organizers such as Dr. Orian Shirihai to establish future opportunities on ME/CFS. The visit was also an opportunity to discuss the staus of ME/CFS research and future collaborations in depth with leading UCLA professors including Drs. Carla Koehler and Alexander van der Bliek.

SMCI Chairs Panel Dedicated to ME/CFS at Precision Medicine Worldwide Conference (PMWC)

SMCI brought the plight of ME/CFS onto the world stage Wednesday at the 2017 PMWC in Silicon Valley, CA. Dr. Zaher Nahle chaired this hour-long session addressing a range of pressing issues in ME/CFS. Panelists included Carol Head (SMCI) and Dr. Andy Kogelnik (OMI). More on this event will be featured in the upcoming Chronicle. 
 
PMWC is the leading forum for personalized medicine with over 8,500 attendees, mostly the who’s who in the biotech industry and academic research. This year's program included many luminaries and was chaired by Dr. Keith Yamamoto (UCSF). For most attendees, we believe this was their first exposure to ME/CFS.

Power to the Patients! Announcing SMCI’s New ME/CFS Advocacy Webinar Series

Enter our new advocacy webinar series, Power to the Patients! Led by Advocacy and Engagement Manager Emily Taylor, this webinar series, open to new and seasoned advocates alike, will give attendees the tools needed to flex their citizen power just in time for congressional budget season.

TO READ MORE, GO HERE.

A Correction from Last Month’s Email


Last month we featured a new paper coauthored by Mary Dimmock regarding disease burden and its relation to NIH spending. The headline used incorrectly listed the disease burden of ME/CFS at $188M. In actuality, $188M was determined to be the amount of annual NIH funding that would be commensurate with the disease burden of ME/CFS. We apologize for any confusion.

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