Author: #MEAction

Help fund CII’s ME/CFS Monster Study: Microbes, Immunity, & Complex Data

Columbia University – Center for Infection and Immunity has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests, and even treatments – but first they need the funds to complete the work.

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Rehmeyer makes statisticians’ “jaws drop” over PACE

Science writer Julie Rehmeyer presented a critique of the PACE trial to North America’s largest gathering of statisticians in Chicago earlier this week. Her talk was titled, “Bad Statistics, Bad Reporting, Bad Impact on Patients: The Story of the PACE trial”. Rehmeyer explained to the 200-strong audience some of the problems with the trial, including

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Introducing Blue Ribbon Fellow: Kelly Gaunt

The Blue Ribbon Foundation, the non-profit behind the documentary Forgotten Plague, has an educational and research agenda. In addition to getting the film in front of as many people in the medical and health profession as possible, one of the primary programs they have created is a student fellowship for medical students to assist in top ME research

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Global: RSVP for #MillionsMissing around the world!

Want to get involved, but aren’t sure how to proceed?  Here is a living document you can use to determine where protests are happening near you, how to register, and who to contact to learn about the #MillionsMissing protests happening around the world. Canada Elizabeth Sanchez and Scott Simpson : millionsmissingcanada@gmail.com Germany Daniel Hattesohl: danielbrh@posteo.de

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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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Watch Free Livestream – Tools for Managing ME/CFS

Wednesday, August 3rd, 7pm Mountain – Free Livestream. Lucinda Bateman MD, Founder and Chief Medical Officer of the Bateman Horne Center, will present methods used at the BHC to partner with patients and help them achieve the best possible function and symptom reduction.

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