By Mary Dimmock and Jennie Spotila This is a cross-post originally published in Jennie Spotila’s blog, Occupy ME. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness
A tribunal panel has ordered Queen Mary University of London (QMUL) to release anonymised data from the PACE trial to Mr. Alem Matthees, a patient who requested it. The ruling has important implications for CFS patients both in the UK and worldwide. The David-vs-Goliath outcome represents the first successful attempt to begin to counter the
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.
The staff of #MEAction, who run the communications platform that is our website, social media channels, and email list, have decided to adopt ME or myalgic encephalomyelitis for future communications about the disease, except where the name CFS or Chronic Fatigue Syndrome needs to be mentioned for the sake of clarity and to effectively communicate
Last October, I released the short documentary The Last Great Medical Cover Up to a widely receptive audience. Now, I am looking to alter and expand the film in time to promote Round 2 of the groundbreaking #MillionsMissing movement. And I need your help to make this new and improved version a reality. Individuals living
The Open Medicine Foundation (OMF) is inviting patients and supporters to send Dr. Ron Davis a message for his birthday and a donation to support his End ME/CFS Project. The OMF said that the messages would be compiled into a “massive card” that would be presented to him. Dr. Davis, of Stanford University, will be
Last year was a pivotal point in the battle against ME/CFS. Game-changing reports from the Institute of Medicine and the National Institutes of Health’s Pathways to Prevention Workshop delivered long awaited public credibility for our disease. The federal ME/CFS landscape has shifted, and there is newfound openness and awareness among key governmental agencies. This positive change has heightened the battle as we fight for scientific understanding, fight for treatments and fight for a cure.
when we feel down, or angry, or frustrated or powerless, let’s refocus a little of our precious energy to move our community forward towards better research, understanding and treatment. Let’s collate all the best resources from our community — the studies, the blogs, the articles, the doctors, the researchers, the patient groups, the healthcare and political situation in each country!
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
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