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.
New Australian study shows immune difference in moderate and severe patients. It may lead to a test based on these markers.
Julie Rehmeyer on Science and ME/CFS Julie Rehmeyer, an award-winning science and math writer, was recently interviewed about how her experience with ME/CFS has affected her perspective on science. The insightful piece ranges from a discussion of how the CDC’s treatment of ME/CFS has lessened her trust of institutions of science to how her experiences have
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
The UK CFS/ME Research Collaborative People with M.E. need better treatment and support. This can only be achieved through increasing the quality of research; by coordinating a stronger collaborative approach to stimulate more research through bringing in expertise from outside the field and supporting early stage career researchers; and by working strategically to increase funding
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.”
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
