This week, we cover the Precision Medicine World Conference, Jen Brea's recent TED Talk and documentary premiere at Sundance, and more
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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.

 

Jen Brea’s ME/CFS TED Talk Gets over 365,000 Views in First Week; Documentary Film Unrest Premieres at Sundance Film Festival

Jen Brea’s much-anticipated TED Talk, “What happens when you have a disease doctors can't diagnose,” discussing the stigmatization of hard-to-understand diseases went live on January 17. Since its release, it has received over 396,000 views, giving ME/CFS excellent exposure to the public...READ MORE

 

New Paper Coauthored by Mary Dimmock Estimates ME/CFS Disease Burden and Its Relation to NIH Spending

The impact a disease has on patients is called its “disease burden.” The World Health Organization has pioneered a single measure of disease burden—disability-adjusted life years (DALY)—which combines the number of years of premature death with the magnitude and number of years of disability caused by a given disease. This important analytic tool helps drive policy decisions by creating a common measure across all diseases.

Recently, Dr. Leonard Jason, Arthur Mirin, and SMCI Board Member Mary Dimmock published a paper estimating DALY for ME/CFS and its relation to research funding. To read an explanation of this paper and the process behind writing it penned by SMCI Board Member Mary Dimmock herself, look out for the winter issue of The Solve ME/CFS Chronicle, arriving in homes late February. The Chronicle will also include an article written by Mary on ME/CFS research case definitions.

If you don’t already receive The Solve ME/CFS Chronicle in the mail at home, you can sign up by filling out this short form. We offer the Chronicle to all in our community at no charge.

Carol Head Participates in Meeting at UCLA Clinical and Transitional Science Institute

The goal of clinical and translational science institutes (CTSIs) is to combine disciplines, resources, expertise, and techniques to promote enhancements in prevention, diagnosis, and therapies. There are now CTSI’s at most leading research universities. The UCLA CTSI is a dynamic
partnership of four institutions in the Southern California area.

Located just six miles from the Solve ME/CFS Initiative’s office in Los Angeles, UCLA is a natural fit for making valuable research connections. Both Carol and SMCI Chief Scientific Offer and Vice President for Research Dr. Zaher Nahle are seizing this opportunity to strengthen relationships with key researchers at UCLA....READ MORE
 

NIH Announces Next Advocacy Call

The National Institutes of Health (NIH) has announced the date and time for the next ME/CFS advocacy call. The call will be held on Wednesday, February 1, 2017, at 3:00 p.m. eastern (noon Pacific). Dial-in information has not yet been provided. SMCI will post dial-in information over social media once it is announced; you can also check the NIH website for updates.

SMCI E-mails Go Bimonthly

Going forward, we will go from publishing a weekly email newsletter to publishing two e-mail newsletters each month: Research 1st mid-month and a news issue at month’s end. To stay abreast of the most up-to-date ME/CFS news, please like us on Facebook and follow us on Twitter.