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october 2016

RESEARCH 1ST NEWS | october 2016


Dear Friends,

Earlier this year, we announced the formation of our Research Advisory Council (RAC), consisting of leading ME/CFS experts and thought leaders across many disciplines. This distinguished assembly met in person last weekend for a full day of workshops, discussions, and lectures as part of our annual gathering, which took place this year in the DC area.

A range of pressing issues in ME/CFS were analyzed, in a candid and collegial atmosphere, including recent scientific and medical developments, changes at government agencies, and existing clinical and research challenges. Also discussed were ideas… Read More

Yours,

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

RESEARCH ROUNDUP

ME/CFS Thought Leaders Come Together for SMCI Research Advisory Council Meeting

On Saturday, October 8, 2016, the Solve ME/CFS Initiative brought together some of the top minds in ME/CFS clinical care and research to collaborate on the key issues facing ME/CFS today. Dr. Vicky Whittemore of the National Institutes of Health (NIH) also joined our discussion.

The program began with a morning closed session led by Dr. Zaher Nahle, where a number of internal SMCI research and scientific programs were evaluated and discussed. 

The afternoon session was kicked off by…
 

TO READ MORE, GO HERE.

UK Holds Third Annual CFS/ME Research Collaborative (CMRC) Conference

The annual CMRC conference, executed by UK-based charity Action for ME, is a major event for ME/CFS in the United Kingdom. This two-day conference took place September 28-29 in Newcastle upon Tyne, with active participation from all CMRC member organizations (including Action for ME, AYME, ME Association, and ME Research UK).

Leading scientists and clinicians, as well as representatives from leading funding agencies like the Medical Research Council and Wellcome Trust, also attended, as did a large group of patients, advocates, researchers, and interested organizations.

TO READ MORE, GO HERE.

 

RESEARCH ROUNDUP

CDC Convenes In-Person Meeting of Its Technical Development Workgroup (TDW)

The long-awaited, in-person meeting for members of the Centers for Disease Control and Prevention (CDC) Technical Development Workgroup (TDW) took place on September 26, 2016, in Atlanta, GA. The advocacy community has long been frustrated that information on the CDC website, which is an important “go to” source of information for patients, doctors and other medical professionals, has information that is in some cases incorrect and potentially harmful.

The meeting, preceded by remarks from Dr. Beth Unger, was noted for being professional, transparent, and productive—a much-sought-after change for the CDC.  It is notable that many senior-level CDC officials were present—perhaps an indication that the interests of patients are being heard. The full-day meeting included the following four sessions…
 

TO READ MORE, GO HERE.

New Research Project Launches through SMCI's Targeted Initiative Program

SMCI recently launched a new partnership as a component of our targeted initiative program, within our Pathways and Biomarkers Discovery Track. The project consists of original research in the areas of bioenergetics, metabolomics, and lipidomics using high-throughput technology. Importantly, this new SMCI research project relies on blood from well-qualified patients from The Levine Clinic; it also builds on recent discoveries in gut microbiome from Dr. Maureen Hanson’s lab, which uses these same patients. 

As always, we partner with experts. In this instance, we have brought together the following group: Dr. Hanson, a professor of molecular biology and genetics at Cornell University; Dr. Levine, a member of SMCI’s Research Advisory Council and the chair of the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee; and... 
 

TO READ MORE, GO HERE.

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