Tag Archives: CFSAC

CFSAC Around the Corner

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

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 8 Comments

The Government Attitude Needed

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

Posted in Advocacy, Commentary, Occupying | Tagged , , , , , , , , , , , , , | 17 Comments

CFSAC Renewed

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

Posted in Advocacy | Tagged , , , , , , , , , , | 11 Comments

CFS Advisory Committee Meeting Outcomes

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

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

Staying the Course to Where?

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

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 17 Comments

RFA Ticker, 4/4/16

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

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 13 Comments

RFA Ticker, 2/8/16

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

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 3 Comments

RFA Ticker, 2/1/16

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

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

CFSAC Testimony, Jennie Spotila, August 18, 2015

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

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 28 Comments

No CDC Funding for CFS?

ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 225 Comments