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SEPTEMBER 2016

RESEARCH 1ST NEWS | SEPTEMBER 2016

Dear Friends,

The decision by the U.S. government’s Agency for Health Research Quality (AHRQ) to downgrade its recommendation on the usefulness of Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) in ME/CFS is a significant and consequential development. It is virtually unprecedented for AHRQ to change a recommendation. Coming in the form of an Addendum to the published 2014 AHRQ ME/CFS Evidence Review after a methodical reanalysis of CBT/GET ME/CFS literature, this development was triggered by unrelenting requests from the patient community. Read More...


Yours,

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

RESEARCH ROUNDUP

 

Big Data: An Important Tool for Complex Diseases like ME/CFS

The use of high-throughput technologies, also called “big-data” analysis or “omics” (for genomics, metabolomics, lipidomics, proteomics, etc.) is becoming increasingly useful for researchers across all disciplines of biomedicine. This approach enables comparative, large-scale analysis among conditions (for example disease vs. healthy states, or within subgroups of a disease). It also has other uses, ranging from biomarker discovery to ancestry identification to drug screening purposes to 23andMe genetic testing.


TO READ MORE, GO HERE.

 

Dr. Hanson Discusses Microbiome Study and Ongoing Metabolic Profiling Projects in ME/CFS

In her recent webinar, Maureen Hanson, PhD, professor of molecular biology and genetics at Cornell University, provided a description of the ongoing work on ME/CFS in the Hanson laboratory, including discussing the gut microbiome findings that have been getting a lot of attention. To read more about this in the news, please see this feature by the Washington Post. In addition, Dr. Hanson’s talk featured the following topics:


TO READ MORE, GO HERE.

 

RESEARCH ROUNDUP

 

Dr. Unger from the CDC Describes Ongoing Work on ME/CFS

Elizabeth R. Unger, PhD, MD, chief of the Chronic Viral Diseases Branch (CVDB) of the Division of High-Consequence Pathogens and Pathology (DHCPP) at the National Center for Emerging and Zoonotic Infectious Diseases (NCEZID), a part of the Centers for Disease Control and Prevention (CDC), recently led an SMCI webinar.


TO READ MORE, GO HERE.

 

IACFSME Covers New SMCI BioBank and Patient Registry

Recently, Lily Chu, MD, MSHS, from the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME) caught up with SMCI’s Dr. Zaher Nahle to discuss our forthcoming new and improved BioBank and Patient Registry, made possible by a grant from the Robert Wood Johnson Foundation/Genetic Alliance White Label PEER Program. Read Dr. Chu’s piece detailing the unique features of our new BioBank and Patient Registry here.

 

NEWS AND EVENTS

 

At Long Last, PACE Trial Data Released

In 2011, results were published for a five-year study conducted to determine what therapies, if any, are effective in treating ME. The PACE trial concluded that graded exercise therapy (GET) and cognitive behavioral therapy (CBT) were effective treatments. Almost immediately, ME patients were concerned about the validityof the study methodology and requested additional information. A multi-year legal battle ensued, involving prominent UK institutions. Patients were concerned not only that the study protocols were not sound, but that the results could be harmful to patients.


TO READ MORE, GO HERE.

 

Another Major American University Announces New Center for ME/CFS Research

As announced during our September webinar with Dr. Maureen Hanson, Cornell University’s vice provost for research authorized the formation of a center for ME/CFS: the Center for Enervating Neuroimmune Disease. This center will include researchers from both Cornell University in Ithaca and Weill Cornell Medical College in Manhattan. A key objective of the new center is to attract more top talent in the field of ME/CFS research. SMCI’s webinar with Dr. Hanson can be viewed on demand here.


 

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Thank You!

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