Category Archives: Advocacy

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 →

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

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 →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , | 40 Comments

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 →

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , | 52 Comments

2016 NIH Spending on ME/CFS Studies

Posted on November 1, 2016 by Jennie Spotila

Update: This post was revised on March 12, 2018 to reflect the addition of intramural research to the total. When I analyzed NIH’s spending on ME/CFS studies in Fiscal Year 2015, I concluded: The bottom line is that NIH is … Continue reading →

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

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 →

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

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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 9 Comments

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 →

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

Tasha

Posted on October 14, 2016 by Jennie Spotila

There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … Continue reading →

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

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 →

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

RFA Ticker, 10/10/16

Posted on October 10, 2016 by Jennie Spotila

It’s a new year (in Washington DC, anyway). I didn’t have to turn the RFA Ticker back to zero, since that is where it was all of FY 2016. But here we are, so let’s get started on FY 2017. … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 6 Comments