Category Archives: Advocacy

RFA Ticker, 7/25/16

Well hey, another Monday! And guess what? It’s another Monday with no ME/CFS RFA to report! This is like a bad habit you cannot break. They say that the definition of insanity is repeating the same behavior and expecting a … Continue reading

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

Naming

Do you notice anything different at the top of the page? Occupy CFS is now Occupy M.E. I thought long and hard about the change, and would like to share my reasoning. First of all, CFS is a crappy name. … Continue reading

Posted in Advocacy, Occupying | Tagged , , , , , , , , , | 26 Comments

RFA Ticker, 7/18/16

Last week was awesome for researchers waiting on an RFA . . . at least for non-ME/CFS researchers anyway. NIH issued RFAs totaling more than $75 million, pushing the fiscal year total over the $2.2 billion mark. Life is especially … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 4 Comments

RFA Ticker, 7/11/16

No RFAs for anybody last week. But there was a very interesting Request for Information issued last week that may have implications for ME/CFS research. The RFI requests information that might be useful in “the development of a comprehensive research … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 15 Comments

Scandal

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , | 19 Comments

RFA Ticker, 7/4/16

We are halfway through the calendar year 2016. There are only three months left in Fiscal Year 2016. We have no RFAs for ME/CFS. Time is slipping away. Total RFAs Issued by NIH: 249 (October 2015 to date) Total Dollars … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 4 Comments

RFA Ticker, 6/27/16

Did we get an RFA last week from NIH? NOPE. But DON’T WORRY. The NIH just awarded Dr. Fred Friedberg a four-year $1.5 million grant to study the hypothesis that push-crash cycles, daily hassles, and negative life events are associated … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 24 Comments

RFA Ticker, 6/20/16

Another week, another $20,000,000+ in RFAs, and nothing for ME/CFS. It’s an unfortunate routine. But it bears repeating that we have an opportunity to speak up, and tell NIH what priorities should be the focus of future ME/CFS research. The … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 4 Comments

Responding to the NIH RFI

For the first time, NIH has requested public input into the future direction of ME/CFS research. This is a chance for researchers, organizations, advocates, and others to provide input directly to the Trans-NIH ME/CFS Working Group on the following questions: … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 31 Comments

RFA Ticker, 6/13/16

A note about reading the fine print: news circulated last week that NIH was making grants to early-stage investigators of ME/CFS. If you only read the headlines or Twitter, you might think these grants are for research. But they aren’t; … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , | 5 Comments