Bob and Courtney Miller are writing a letter to Francis Collins, Director of the National Institutes of Health (NIH) and Sylvia Burwell, US Secretary of Health asking that the NIH: Assign ME/CFS to a strong, well-funded Institute like NINDS, to enable strategic planning and structural accountability. Fund a mix of intramural and extramural research (as NIH does for
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-
MedPage Today Focuses on Need for Recognition of ME/CFS and Research Funding MedPage Today, a news site for medical workers, published an article about ME/CFS that mentions the #MEAction campaign to increase federal research funding. The article gathered quotes from top ME/CFS researchers Leonard Jason and Lucinda Bateman, and it summarized the findings of the recent
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
I want Sweden to contribute to international research for ME / CFS – it will also help you! Sweden has about 40 000 people suffering from ME / CFS. I hope that Sweden can contribute to the Open Medicine Foundation and Lipkin / Hornig study.
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
Ron Davis and Janet Dafoe had to watch as their son Whitney Dafoe deteriorated from an active, world-traveling photographer to bed-bound and at the edge of starvation due to ME/CFS. Davis has built a world-class research team to study ME/CFS, including co-investigators from top institutions including Harvard and Stanford. Despite his team’s track record and expertise, their
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
When we started working on the 21st Century Cures Act lobbying campaign we quickly learned that NIH officials are continuing to tell people that no one is interested in researching ME/CFS and that the research applications they have received have been poor. At Tuesday’s CFSAC meeting Cheryl Kitt, the Deputy Director of the Center for
