Tag Archives: recommendations

RFA Ticker, 11/21/16

Posted on November 21, 2016 by Jennie Spotila

The big news (apart from the election, of course) is that Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative had a brief meeting with Dr. Francis Collins, Director of NIH. SMCI reported: Dr. Collins could not offer … Continue reading →

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RFA Ticker, 11/14/16

Posted on November 14, 2016 by Jennie Spotila

It got a bit crazy with NIH last week, didn’t it? The talk by Dr. Shorter went ahead as scheduled on November 9th, much to the chagrin of the entire patient community. Afterwards, NIH issued a follow up response which … Continue reading →

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Small Steps of Progress

Posted on November 9, 2016 by Jennie Spotila

Progress, no matter how small, is still progress. Any tiny incremental change advocates can achieve is improvement, and it’s important to acknowledge when it happens. I am pleased to report that NIH has taken a small step towards providing more … Continue reading →

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RFA Ticker, 11/7/16

Posted on November 7, 2016 by Jennie Spotila

We learned a bit more about NIH’s plans for ME/CFS RFAs during last week’s NIH telebriefing. In response to a comment from Bob Miller, Dr. Koroshetz said that funding for the research consortia centers will be “significant” and “equivalent to … Continue reading →

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RFA Ticker, 10/31/16

Posted on October 31, 2016 by Jennie Spotila

Among the $53 million in RFAs issued by NIH last week were two RFAs for pilot clinical trials in pediatric chronic kidney disease. These are significant for us because the RFAs establish a network of three participating clinical centers and … Continue reading →

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RFA Ticker, 10/24/16

Posted on October 24, 2016 by Jennie Spotila

Another huge week for RFAs at NIH! Last week alone, NIH issued 17 RFAs for a total of more than $94 million. ME/CFS research did not get an RFA, but we did get official news about the RFAs promised us … Continue reading →

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RFA Ticker, 10/17/16

Posted on October 17, 2016 by Jennie Spotila

Have you heard the expression “Go big or go home?” That is the perfect description of last week’s RFA totals. NIH only issued one RFA last week, but it was a big one. The set aside funding of $28,750,000 more … Continue reading →

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Collins Responds to Congress

Posted on October 10, 2016 by Jennie Spotila

In September, fifty-five members of the House of Representatives sent NIH Director Dr. Francis Collins a letter in support of more ME/CFS research. Dr. Collins has now responded, but it is hardly satisfactory. You may recall that Representatives Lofgren and … Continue reading →

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Quick NIH Updates

Posted on October 6, 2016 by Jennie Spotila

A few quick hit NIH updates, all drawn from the website for the Clinical Care study: The consent form for the study has been posted. Of note, people with depression, anxiety, etc. are excluded if their symptoms are not well-controlled … Continue reading →

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RFA Ticker, FY 2016 Wrap Up

Posted on October 3, 2016 by Jennie Spotila

Fiscal Year 2016 ended on Friday, September 30th. Were you holding your breath for that ME research RFA? I hope not. NIH did not issue an RFA for ME research in FY2016. However, NIH did issue 352 RFAs in that … Continue reading →

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