#MEAction, Author at #MEAction Network

Solve ME/CFS Initiative Update

July 15, 2016 No Comments

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.

The alchemy of turning frustration into power

July 14, 2016 2 Comments

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!

Tuller slams “terrible” PACE in podcast

July 13, 2016 2 Comments

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

Advocates and scientists respond to NIH’s Request for Information

July 11, 2016 2 Comments

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

QMUL spend £250,000 on PACE data tribunal

July 9, 2016 2 Comments

Queen Mary University of London (QMUL) have revealed that they spent £250,000 on legal fees in the recent tribunal concerning the release of anonymised data from the PACE trial. Their statement was made in response to a query made under the Freedom of Information Act by Mr. John Peters. QMUL paid £160,000 to Mills &

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

July 8, 2016 8 Comments

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

Hold a Forgotten Plague Screening!

July 6, 2016 5 Comments

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

Lift Your Voice, Share Your Story – BHC Patient Voice

July 4, 2016 No Comments

Patient Voice – a special place online for members of our community to share their stories, art poetry, photography and music. We highlight the strength, joy, humor and beauty that can be found in a life changed by ME/CFS. Our goal is to lift your voice a little higher and help your story be heard loud and clear. Topic for June/July : “Tell us about a time when someone showed you unexpected kindness and it had a positive impact on you as you manage your chronic illness” Make Your Submission!

Introducing the Bateman Horne Center Online Patient Library

June 22, 2016 1 Comment

A collection of publications, videos, posts and links to other online resources helpful to those living with ME/CFS and Fibromyalgia.

Listen to Jarred Younger's CDC conference call this Thursday

June 21, 2016 1 Comment

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

Author: #MEAction