Tag Archives: grants

Talk Is Cheap

Posted on July 13, 2015 by Jennie Spotila

In today’s guest post, Denise Lopez-Majano makes the case that the time for talk is over and the time for action is now. For decades, stakeholders have advocated for funding commensurate with the severity of ME/CFS. The government’s response has … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , , , | 12 Comments

P2P: Where Next?

Posted on June 29, 2015 by Jennie Spotila

There is one official final step in the P2P process: a federal partners meeting supposed to be held six to eight months after the workshop. But there are other marching orders, too. For us. Federals Only As described on the … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , , , , , | 10 Comments

Showing the Back of Their Heads

Posted on June 22, 2015 by Jennie Spotila

The final P2P report is published, and now it’s time to evaluate the quality of the recommendations and how well the process served ME/CFS patients. There are many good things in the P2P report, and I’ll be focusing on those … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , , , , , , , , , , | 42 Comments

The Burial of ME

Posted on May 8, 2015 by Jennie Spotila

Mary Dimmock has published an extraordinary review of the last thirty years of ME history. With her permission, I’ve reported her announcement with the link to the full document below. I highly recommend reading as much of this document as … Continue reading →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , | 14 Comments

Expired Opportunities

Posted on March 10, 2015 by Jennie Spotila

NIH funding of ME/CFS research has bumped up against a deadline that could have dire consequences for 2015 and beyond. The primary mechanism for grant applications has expired. Grant applications to NIH must be submitted in response to calls for … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , | 18 Comments

2014 NIH Spending on ME/CFS Studies

Posted on March 4, 2015 by Jennie Spotila

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. There is no denying or avoiding the importance of the IOM report and its associated controversies, but ME/CFS advocates must keep eyes … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 30 Comments

NIH: Passing ME/CFS Over Again

Posted on December 1, 2014 by Jennie Spotila

NIH will (in its own mind anyway) be showcasing ME/CFS at the P2P Workshop next week. But ME/CFS research at NIH is caught in a never-ending cycle of being passed over in every way that matters. At its June 2014 … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 7 Comments

Congress: We Need An RFA

Posted on April 2, 2014 by Jennie Spotila

I am very happy to report that an effort is underway to secure Congressional support for a $7-10 million RFA for ME/CFS funding at NIH. And there is something YOU can do to help! Representative Zoe Lofgren (D-CA) and 10 … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 35 Comments

2013 NIH Spending on CFS Studies

Posted on March 31, 2014 by Jennie Spotila

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. I have positive news to report: NIH spending on ME/CFS  in 2013 was actually higher than it was in 2012. Are you … Continue reading →

Posted in Research | Tagged , , , , , , , , | 27 Comments

Need to Reality

Posted on August 5, 2013 by Jennie Spotila

One of the key moments of the April FDA meeting on drug development for ME/CFS was when Bernard Munos said that ME/CFS patients will have to collect and pool their data to attract the interest of big pharma. Many advocates … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 7 Comments