CFSAC- Let’s Take Action ME community members were caught off guard when the proposed 2016 Senate appropriations bill zeroed out CDC funding for CFS research. Several advocates scrambled to address this and their efforts to be heard appear to have paid off. But scrambling is not something ME advocates can, or should do. Health- and resource-
USA’s CFS Advisory Committee wants bigger research, aimed at finding diagnostic tests, using Canadian Consensus Criteria and private-public partnerships to find drug treatments. It asks for $250 million annually, estimating ME/CFS costs the US up to $24 billion.
We’re proud to announce that our new partnership with Tugg is now LIVE! Tugg is a “theatrical-on-demand” platform that gives documentary fanbases like ours access to 90% of the movie theaters in the United States. Tugg helps you book a movie theater near your home, advertise, sell tickets, and stage a high-caliber screening to build
AIDS Research took a death sentence and made it a manageable disease. ME-CFS needs the same level of effort to solve this worse disease that often is lifelong. Request $250M per year for ME-CFS R&D, so NIH can stop discrimination against ME-CFS and related diseases.
A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the Centers for Disease Control and Prevention. This discovery launched a wave of emails, letters, and phone calls to key Senate staff from hundreds of people, including representatives of six different ME/CFS organizations. After this coordinated effort, we now
The Open Medicine Foundation’s (OMF) Severely Ill Patient Big Data study is now fully funded with $1 million in private research funding thanks to a groundswell of crowdfunding efforts and several generous donations by anonymous donors!
Very little research has been done in the bedbound patients “Hopefully, the more severely ill will have a stronger signal of what’s going wrong.”
The VideoHealth study is currently in its final months of national recruitment for participants and is seeking to enroll eligible patients and their partners. For more information please call 305-355-9200 and press option 5, or email us at [email protected].
CDC – Collaboration to Develop ME/CFS Educational Materials Based on IOM Report The CDC is requesting quotes from business of all sizes to assist them in the development of ME/CFS educational materials based on the IOM reports. Specifically, they are looking for contractors to assist with professional, administrative, and management support services. From FedBizOpps.com: The
The US National Institutes of Health (NIH) has awarded a total of $1.3 million for ME research to three teams led by Drs. Ian Lipkin and Mady Hornig, Nancy Klimas and Maureen Hanson, respectively. In an unexpected move, the NIH gave $766,000 to Drs. Ian Lipkin and Mady Hornig and their team at the Center
