Tag Archives: funding

P2P: Taking Shape

Posted on June 20, 2014 by Jennie Spotila

The P2P ME/CFS Workshop has been approved and is scheduled for December 9-10th, 2014. The focus of this post is on analyzing four components of the information released by NIH yesterday: P2P is describing our disease as fatigue, without post-exertional … Continue reading →

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Research Roadmap

Posted on April 14, 2014 by Jennie Spotila

The Research Recruitment Working Group of the CFS Advisory Committee has been formulating recommendations that could potentially change the direction of ME/CFS research at NIH. Not much time has been spent on it at the last two meetings, but I … Continue reading →

Posted in Research | Tagged , , , , , , , , | 16 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

Exit Stage Right

Posted on March 13, 2014 by Jennie Spotila

Another CFS Advisory Committee member has resigned. After the March 11, 2014 CFSAC meeting, I emailed the Office of Women’s Health and asked for a list of who had attended the meeting. I tried to keep track of the roll … Continue reading →

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Silver Platter of Frustration

Posted on March 12, 2014 by Jennie Spotila

Yesterday’s CFS Advisory Committee meeting was insane. Wait, maybe the meeting just drove me insane. Or was the whole thing just insanely inane? I don’t even know anymore. Wait a second, hang on. Ok, let me start again. Yesterday’s CFS … Continue reading →

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More on P2P

Posted on January 13, 2014 by Jennie Spotila

Robert Miller posted a statement on Facebook last night revealing that he was one of the members of the P2P Working Group that met at NIH last week. I’ve posted his full comment below, with his permission. Bob is very … Continue reading →

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Behind Closed Doors

Posted on January 6, 2014 by Jennie Spotila

There’s an important meeting happening at NIH today and tomorrow, but you probably know nothing about it. The secrecy of this meeting is intentional, and the implications of decisions made at the meeting are as far-reaching as the Institute of … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , | 51 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

No Facts for YOU!

Posted on June 6, 2013 by Jennie Spotila

The NIH funding argument is a broken record: Advocates and researchers say, “We want more funding!” NIH replies, “We need more applications!” And advocates and researchers reply, “Your review panel is made up of dentists!” Back and forth. Back and … Continue reading →

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