Back in March, we urged you to take action and inform your state health officials and departments to begin tracking ME/CFS as part of the their annually-conducted Behavioral Risk Factor Surveillance System (BRFSS). Many chronic health conditions are tracked using this system. State health departments use the data collected to plan health projects and allocate resources; national
On May 24th, 2018, we delivered this 580-page letter to Francis Collins, with over 7,000 signatures, photos, and personal comments. We are demanding urgent action to increase funding for research, find a diagnostic test, support clinical trials, and develop treatments, and a meeting to discuss all this with NIH Director Francis Collins. We also sent this video
The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its website, thanks to the hard work of #MEAction activists. New York is one of only three states in the U.S. that has a page on ME. (Illinois and Wisconsin have some information about chronic fatigue syndrome.)
Read Volume One and Volume Two. Day #5 cont’d. My partner and I hit a point of exhaustion. From him having the flu, my turn in symptoms and the lack of wheelchair friendly locations, creating your own fun on a holiday is an easy concept when your cup is full but both our cups had
Today, the Open Medicine Foundation announced that it had funded a new ME/CFS Collaborative Research Center at Harvard under Ron Tompkins and Wenzhong Xiao, to the tune of $1.8 million dollars. The Center will include with Massachusetts General Hospital (MGH), Brigham and Women’s Hospital, and Beth Israel Deaconess Medical Center. There are two main goals
“…What literally did not kill me has only made me stronger because giving up was not an option.”
Australian research is underfunded and the government’s clinical guidelines are outdated so the Australian government’s ME and CFS advisory committee is welcomed. It provides an important opportunity to call on the government to fund biomedical research and to give Australian doctors desperately needed clinical guidance. However, there are mixed perspectives on the committee.
Australian Ricky Buchanan has written a much-needed report about the issues facing bedbound and homebound people in getting access to medical care.
An inquest into the death of Merryn Crofts, 21, concluded that she died from starvation due to severe Myalgic Encephalomyelitis (ME) – making her the second person in the U.K to have ME listed on a death certificate. Merryn weighed less than six stone (84 pounds) at the time of her death, and had spent
Sharing a rare but intimate glimpse of life living with a disability, coping with new diagnosis and healing from the damage of old diagnosis.
