Category: United States

Quick Update: #MillionsMissing Meeting with Dr. DeSalvo

Last week, MEAction announced that Jen Brea, Terri Wilder, Carol Head, Jennie Spotila, and Mary Dimmock would be meeting with Dr. Karen DeSalvo, Assistant Secretary of Health on August 1. The purpose of that meeting, which happened yesterday, was to impress upon Dr. DeSalvo how woefully inadequate HHS’s response to this disease has been and

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SMCI Engaged with NIH Officials to Further Appropriate ME/CFS Funding

On May 24, 2016, the National Institutes of Health (NIH) released the first ever Request for Information (RFI) regarding ME/CFS, requesting submissions addressing new research strategies for the disease. Solve ME/CFS Initiative (SMCI) submitted a unique and pointed response to this RFI in the form of an imitation funding announcement.

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Give your feedback on the #MEAction USA protest demands!

Note: the deadline has been extended until next Friday, August 12! We are soliciting feedback from the entire community on the #MillionsMissing US Protest Demands, which were drafted last spring for the May protest. You can read them in full here: http://millionsmissing.meaction.net/protest-demands The goal of this process is to revise the demands and adopt them

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Blue Ribbon Foundation: An interview with Ryan Prior

Ryan Prior first made waves with his article in USA Today about his experience with ME/CFS that was shared over 2,000 times. He spoke of, as a junior in high school, falling so ill he could no longer attend classes. “I saw about 20 different doctors that year from every specialty you can imagine,” he

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#MillionsMissing US Protesters to Meet With DeSalvo at HHS

A meeting with Karen B. DeSalvo, the Acting Assistant Secretary for Health at the US Health and Human Services (HHS) and the National Coordinator for Health Information Technology, will be held this August.  The meeting was arranged in direct response to a request made around the May 2016 #MillionsMissing protests. In May 2016, #MillionsMissing protests

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US: Attend the #MillionsMissing USA call this Sunday!

This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize, and connect with other protesters.  Those who have volunteered to lead a city protest are highly encouraged to attend; those just wanting to learn more about the protests are also very welcome. If this is the

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Tuller slams “terrible” PACE in podcast

Dr. David Tuller has provided an overview and update of his work criticizing the PACE trial in a podcast interview with Professor Vincent Racaniello on This Week in Virology (TWiV). Dr. Tuller, of University of California, Berkeley, published a series of damning critiques of the study on Professor Racaniello’s Virology Blog, starting with a lengthy article

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Advocates and scientists respond to NIH’s Request for Information

Leading scientists, organisations and patients around the world have responded to the US National Institutes of Health’s (NIH’s) Request for Information to guide its research strategy on ME/CFS. It is the first time that the NIH has asked for public input on the disease. The request, made in May, drew public responses from Dr. Ronald

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Medical Textbooks Earn a Failing Grade in ME/CFS – 1 of 2

Part II in our series on medical education and ME Note: This is a two-part article in our series on education in ME/CFS.  Part 1 covers UpToDate, the University of North Texas, Michigan State University, and the University of Nebraska; Part 2 will cover the University of California–San Francisco, the University of North Carolina, and

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