Tag Archives: CFSAC

CFSAC Meeting Information and Logistics

Posted on December 30, 2016 by Jennie Spotila

The federal CFS Advisory Committee meeting is only two weeks away. This will be an in-person meeting, but will not be held in the Health and Human Services building. Denise Lopez-Majano and I reached out to HHS for important information … Continue reading →

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CFSAC Around the Corner

Posted on December 20, 2016 by Jennie Spotila

The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while … Continue reading →

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The Government Attitude Needed

Posted on November 22, 2016 by Jennie Spotila

Government/advocate interactions frequently happen on a public stage, where everyone is rightly careful about what they say. Sometimes, though, we can get access to behind the scenes communication. In emails that the authors probably believed would remain private, we can … Continue reading →

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CFSAC Renewed

Posted on September 12, 2016 by Jennie Spotila

As expected, the charter for the CFS Advisory Committee has been renewed for another two years. This has become a routine operation, but the new charter makes some intriguing changes to the CFSAC. I also have new information on potential … Continue reading →

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CFS Advisory Committee Meeting Outcomes

Posted on May 21, 2016 by Jennie Spotila

The CFS Advisory Committee is charged with advising the Secretary of Health and Human Services on issues related to ME/CFS. HHS has a very patchy record in its responses to CFSAC recommendations, but the committee’s public meetings remain highly significant. … Continue reading →

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Staying the Course to Where?

Posted on May 3, 2016 by Jennie Spotila

Dr. Francis Collins, Director of the National Institutes of Health, made a request of the ME/CFS community. During the March 8, 2016 NIH telebriefing, Dr. Collins said: So please take our commitment with great seriousness. Please also stay the course … Continue reading →

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RFA Ticker, 4/4/16

Posted on April 4, 2016 by Jennie Spotila

Last week was a big one for RFA news. NIH issued revised responses to the August 2015 CFS Advisory Committee recommendations. Regarding RFAs, NIH said: “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive … Continue reading →

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RFA Ticker, 2/8/16

Posted on February 8, 2016 by Jennie Spotila

Total RFAs Issued by NIH: 131 (October 2015 to date) Total Dollars Committed to RFAs: $1,545,000,000 (October 2015 to date) Total RFAs for ME/CFS: ZERO (October 2015 to date) Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS 2/1/16 8 … Continue reading →

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RFA Ticker, 2/1/16

Posted on February 1, 2016 by Jennie Spotila

Why do I keep updating this RFA (Request for Applications) tracker every Monday? Because an RFA comes with set aside funds to stimulate research in a particular area. The last ME/CFS RFA was issued in 2006. Over the last ten … Continue reading →

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CFSAC Testimony, Jennie Spotila, August 18, 2015

Posted on August 17, 2015 by Jennie Spotila

Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading →

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