July was a big month for scientific research in ME! Many of the most well-known researchers and clinicians had papers this month including Klimas, Lipkin, Hornig, Levin, Peterson, Montoya, Julie Newton, Broderick, and Marshall-Gradisnik. There were studies in epigenetics, NK cell function, the HPA axis, robots for schoolchildren with ME, and a few interesting critiques
Update: #MEAction has incorporated your comments in its draft to the CDC! See what we’ve added from the comments below by clicking on the updated version of the article by clicking here: CDC website article text. Community-based changes to our recommendations are in red ink. In September 2016, I attended a meeting at the Centers for
Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under Ron Tompkins and Wenzhong Xiao, to the tune of $1.8 million dollars. The Center will include with Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center. There are two main goals
Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME. Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.
Recently, #MEAction sat down with Julie Rehmeyer to discuss her new book Through the Shadowlands, her op-ed in the New York Times with David Tuller, and next steps. What made you embark on a project like Through the Shadowlands? I’m a writer, and it was a big experience I was going through, having ME. It
If you live in the San Francisco Bay Area, or know any others who do, please consider asking them to donate blood to the Stanford Genome Technology Center as a healthy control. The blood will be used for multiple purposes, including in Ron Davis‘s ME/CFS research. If you know individuals who are happy to help
Thank you for this opportunity to address the CFS Advisory Committee. I am writing to in response to the call for comments regarding how the US government might engage members of the ME/CFS community, especially patients and their lay supporters, in addressing and solving the clinical, research, educational, and public health challenges of this condition.
Yesterday, Mary Dimmock, Arthur Mirin and Leonard Jason published a hallmark study in disease burden in myalgic encephalomyelitis. Why is funding so low? Funding for ME/CFS is arguably the lowest per patient for any major disease in the United States, averaging to about $5 per patient per year. Compare this to multiple sclerosis, an illness
One of the frequent complaints of patients, researchers, and policymakers about ME research is that the findings are scattered, and the studies, small. One group will discover X is elevated in 20 ME patients, only to find that when the test is done on another 13 patients two years down the line, they don’t show
When a grant proposal is submitted, a panel of experts will examine it for merit before making a final decision. But what happens when those ‘experts’ deny the very existence of the disease they purport to study? Memorably, a recent grant proposal was submitted to Canada’s CIHR (Canadian Institutes of Health Research) to study ME/CFS,
