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Not Without ME

A Research Update

On May 3rd, at the monthly BHC Education Meeting, Linda Avey and Suzanne D. Vernon, PhD discussed their cutting-edge research collaboration. Linda described how her team is working together with the Bateman Horne Center to track data, chart experiences and find patient-generated answers using Precise.ly.  Suzanne shared the results of an ME/CFS pilot study using Precise.ly and a sleep tracking device called OURAring.  In an interactive discussion with Dr. Bateman, they discussed how this approach is going to be used in new research underway.

 

Linda AveyLinda Avey is co-founder and CEO of Precise.ly, a platform designed to help individuals track and assemble their personal health data—from wearables, sensors, environmental monitors, to genomics and microbiome sequences— creating a rich source of information helping propel the Precision Health movement. Precise.ly facilitates data sharing with researchers and physicians, all at the users’ control and consent.

In 2006, Linda co-founded 23andMe with a similar mission: accelerating genetics research through crowd-sourcing and consumer data sharing. The company now hosts 2 million genetic profiles linked to individuals who share their phenotypic data, driving the company’s research and drug discovery efforts. 23andMe recently received clearance from the FDA to provide disease risk reports through a direct-to-consumer model. Prior to 23andMe, Linda worked for companies providing biomolecular research tools to academic, pharma, and biotech research organizations.

 

Suzanne D Vernon PhDSuzanne D Vernon, PhD has her master’s degree in Microbiology from Colorado State University and her doctorate degree in Virology from the University of Wisconsin, Madison. She has co-authored 100 scientific papers and dedicated the past 20 years of her professional research career on identifying biomarkers and causes of ME/CFS.

Her career is highlighted by a number of “firsts”. As a team lead member of the U.S. Centers for Disease Control and Prevention’s CFS research group, Vernon conceived and organized a BIG DATA computational challenge. She recruited an eclectic team of molecular biologists and computational biologists to merge data collected in laboratory, clinical and epidemiology studies with the goal of identifying biomarkers to objectively define ME/CFS. Suzanne “built” the Research Institute Without Walls (RIWW), the first nonprofit patient-centered research initiative focused on identifying diagnostic biomarkers and disease-modifying treatment for ME/CFS. The RIWW attracted some of the brightest investigators from the best institutions into ME/CFS research. Suzanne brings several of her connections and collaborations with her to the Bateman Horne Center where she is building a research program focused on identifying biomarkers, developing diagnostic tests, and uncovering evidence-based treatments for ME/CFS.

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The Bateman Horne Center holds monthly education meetings on the first Wednesday of each month. Patients and other interested parties that reside in the Salt Lake City area are invited to attend in person at the new BHC Education Center (located at 24 South 1100 East, Suite 205, Salt Lake City, UT), meet others and engage in a live Q&A.

For those outside of the area, all of the sessions are streamed live on Facebook, then later housed on our YouTube channel, making them available to all. There is no need to register and the events – livestream or in person attendance – are always free. The link never changes:

To watch LIVE on Facebook: https://www.facebook.com/batemanhornecenter

After the education meeting takes place, all recordings are archived here on the BHC blog, in the patient library, and on the BHC YouTube channel.

If you want to stay in touch and informed on these and other opportunities, sign up to follow this blog at the top right of this page and be sure and subscribe to our free monthly e-news, the BHC Empower Update.

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