Tag Archives: action

RFA Ticker, 11/28/16

Posted on November 28, 2016 by Jennie Spotila

A short week due to the Thanksgiving holiday doesn’t slow NIH down, apparently. More than $40 million was committed to RFAs last week. ME/CFS research didn’t even get the giblets. Will we be more successful in December? Here are the … 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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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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The Proverbial Olive Branch

Posted on November 10, 2016 by Jennie Spotila

In what will probably be the last word from NIH on the invited lecture by Dr. Edward Shorter, the Trans-NIH ME/CFS Working Group has issued a follow up response to the ME community. For background, read my open letter to … 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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Enough Is Enough

Posted on November 4, 2016 by Jennie Spotila

After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion … Continue reading →

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An Open Letter to Dr. Koroshetz

Posted on November 3, 2016 by Jennie Spotila

The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke. A plea for sanity, respect and science Dr. Koroshetz, I write to you tonight to personally … 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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