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
Forgotten Plague, a documentary that a journalist at The Huffington Post called “a must-see documentary” is now available through ordering a DVD or streaming through Amazon Prime. Much of the documentary’s quest is to educate people on ME/CFS, especially those in the medical and health fields. Getting the film in front of those who need
What can you do for ME activism today? Many patients, caregivers, physicians and educators would like to contribute to ME activism in a meaningful way, but patients have limited resources and energy. ME patients aren’t working alone, however: if even a small percentage of the ME population were to work together, we would still be
On June 27, Jennifer Brea, #MEAction co-founder, filmmaker, TED Fellow, readied herself to speak in Banff, Canada at TEDSummit 2016. The process of preparing can be described as grueling for anyone, much less for someone with ME: Brea had spent weeks writing and fact-checking the talk with a committee from TED, and now had to keep her focus
A collection of publications, videos, posts and links to other online resources helpful to those living with ME/CFS and Fibromyalgia.
The latest of the US Centers for Disease Control’s (CDC’s) Patient-Centered Outreach and Communication Activity (PCOCA) telephone conference calls for ME/CFS will take place on Thursday, June 23, and will feature Dr. Jarred Younger. His talk, which will begin at 3:15 pm EDT (Eastern Daylight Time), is titled, “Current and Future Research on ME/CFS Treatments
On May 25, 2016, we did something extraordinary together: we held the largest, loudest protest ever held for ME/CFS. We came out in force: in Boston, Dallas, San Francisco, Seattle, Washington D.C., Raleigh, and Atlanta; in London; in Melbourne; in a Canada-wide virtual protest; in Bergen, Norway; and in Belfast, Northern Ireland. Impromptu shoe displays
This month, Valerie Free’s new book, Lighting Up a Hidden World: CFS and ME will be released to the public. In 1990, Valerie Free was a vibrant, thirty-year-old woman: a court stenographer, wife, and mother. In July of that year, she came down with a sudden, flu-like illness and after months of unrelenting and bizarre
“Simply by spurring a conversation across the community, I see this as a win.”
