Author Archives: Jennie Spotila

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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 12 Comments

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 →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , , | 21 Comments

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 →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 21 Comments

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

Dr. Koroshetz Responds

Posted on November 4, 2016 by Jennie Spotila

I just received the following letter from Dr. Koroshetz: Below is a letter from Dr. Walter Koroshetz Dear members of the ME/CFS community, I appreciate the concern of many in the ME/CFS community as expressed in Ms. Spotila’s blog post … Continue reading →

Posted in Uncategorized | 27 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