Category: Awareness

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

Read More »

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

Read More »

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.

Read More »

Our losses in the ME community

It’s been a devastating summer for the ME community.  We have lost Jodi Bassett, Louise Ramage, Tink Bastian, and Linda Hayes Burke.  Yesterday, we learned that we lost Tom Jarrett. Jodi Bassett, 41, was a passionate advocate for ME who helped thousands of people better understand their condition through her website The Hummingbirds’ Foundation for

Read More »

#MEAction Policy Change: ME, not ME/CFS

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

Read More »

US: Attend the #MillionsMissing USA call this Sunday!

This Sunday at 4pm ET, US organizers for the September #MillionsMissing protests will be meeting together to plan, mobilize, and connect with other protesters.  Those who have volunteered to lead a city protest are highly encouraged to attend; those just wanting to learn more about the protests are also very welcome. If this is the

Read More »

Contribute clips to L.A.'s #MillionsMissing Video

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

Read More »

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

Note: This is a two-part article in our series on education in ME/CFS.  Part 1 covered UpToDate, the University of North Texas, Michigan State University, and the University of Nebraska; Part 2 covers the University of California–San Francisco, the University of North Carolina, and other best sellers.  To read Part I of this article, click

Read More »

Solve ME/CFS Initiative Update

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.

Read More »