Anne LiConti is a member of the ME/CFS community who needs our help to obtain a life-saving surgery. Anne’s uterine fibroids have grown so large and numerous that her uterus is now the size of a 14-week pregnancy. This March, I was stricken with extreme complications: uterine hemorrhage from the fibroids. I started having orthostatic
Web MD, the largest online publisher of news and information regarding health and well-being, has released its “latest news” about ME/CFS in an article based on the discredited PACE trials. It asserts that “British researchers concluded that a form of talk therapy, called cognitive behavior therapy, and graded exercise therapy are among the best treatments for chronic fatigue.”
#MEAction is excited to announce its first protest in Washington DC! (Now rescheduled for May 25, 2016) Please join us May 25th for a protest outside of the Health and Human Services building in Washington DC. Our goal is to raise the visibility of this illness and the people living with it. Can’t make it to
Write to the University of New South Wales and ask them not to allow a trial to train health professionals in graded exercise therapy and cognitive behaviour therapy for chronic fatigue syndrome patients in Australia.
Canary in a Coal Mine (working title), my documentary film about myalgic encephalomyelitis, is heading toward rough cut, an early version of the finished film. Right now, we are working intensely on the historical sections to help the audience understand not only the history of the disease but a broader history of medicine. The intention is to give
This is the first study on ME/CFS conducted by NIH in two decades. One million patients suffer from this disease, too long neglected by both CDC and NIH. It is critical that the Principle Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.
Liisa Lugus has been bedbound with extreme myalgic encephalomyelitis for 13 years and is losing her current home. She has nowhere to go and needs our help: https://www.tilt.com/tilts/liisa-lugus-urgent-housing-and-long-term-care-fund https://www.facebook.com/friendsofliisalugus/info/?tab=page_info
The Pediatric and Adolescent ME/CFS Primer team is aiming to complete the new Primer by mid-October, 2016. As was done for the adult ME/CFS Primer, the team would appreciate having original artwork for the cover of the Pediatric and Adolescent ME/CFS Primer
Forgotten Plague, the new documentary about ME/CFS is screening at Reading Cinemas The Tower Theatre in Sacramento, CA at 6:30pm on March 10th, 2016.
On Tuesday, March 8th at 10am ET, the NIH is holding a one hour tele-briefing to answer the community’s questions about their plans for the intramural study and the ME/CFS program. Due to the limitations of the technology, only 100 lines are available. Call-in information has been sent to a select number of advocates including members of
