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Tag Archives: awareness
Scandal
Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, AHRQ, awareness, case definition, CBT, CDC, exercise, GET, occupy, open data, PACE, pacing, politics, post-exertional malaise, researchers, speaking out, treatment
19 Comments
PACE-Gate
It is International ME/CFS Awareness Day, and what is most on my mind is the status of PACE-Gate: the controversy over the design, conduct and results of the PACE trial. PACE is the largest clinical trial in ME/CFS, and it … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, AHRQ, awareness, case definition, CBT, CDC, exercise, GET, May 12th blog bomb, occupy, open data, PACE, pacing, politics, post-exertional malaise, researchers, speaking out, systematic review, treatment
9 Comments
Very Very Aware
May 12th is International ME/CFS Awareness Day, selected because it is Florence Nightingale’s birthday. If you look around blogs and social media today, you’ll probably see a lot of blue ribbons and statements from patients. There’s the May 12th Blog … Continue reading
Posted in Commentary
Tagged action, anger, awareness, CDC, CFSAC, DHHS, FDA, funding, government, May 12th blog bomb, NIH, occupy, politics, priorities, recommendations, speaking out
38 Comments
Awareness Reboot
Today’s post comes from Denise Lopez-Majano. She makes a powerful argument for the kind of awareness campaign we need. The release of the Institute of Medicine report resulted in an unprecedented amount of media coverage and public discussion. As has … Continue reading
Posted in Advocacy, Commentary
Tagged action, awareness, case definition, CDC, CFSAC, Denise Lopez-Majano, DHHS, funding, government, guest post, IOM, occupy, politics, priorities, recommendations, speaking out
30 Comments
Be Aware
Today is ME/CFS Awareness Day. Why May 12th? It is the birthday of Florence Nightingale, who became bedridden with an illness resembling ME/CFS after the Crimean War. From 1860 to her death in 1910, Nightingale continued to work for the … Continue reading
Posted in Advocacy, Commentary
Tagged awareness, living with, occupy, speaking out, suffering
Comments Off on Be Aware
Expectations
Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading →