Tag Archives: transparency

Who Reviews ME/CFS Applications for NIH?

Posted on February 5, 2019 by Jennie Spotila

Note: After publishing this post, I discovered that I had inadvertently missed one meeting in 2017. This post was updated on February 12, 2019 to reflect all new calculations. The changes are not significant enough to alter any conclusions. There … Continue reading →

Posted in Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 30 Comments

Rest In Power, CFSAC

Posted on September 7, 2018 by Jennie Spotila

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is dead. Both the website and the email listserv made the announcement on September 6th: “The charter for the Chronic Fatigue Syndrome Advisory Committee expired on September 5, 2018.” A sudden death under … Continue reading →

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

How Much Will NIH Spend in 2018?

Posted on July 30, 2018 by Jennie Spotila

Fiscal year 2018 is almost over, and I have calculated how much NIH is likely to spend on ME research this year. The short answer? Based on current numbers, I project a 17.6% decrease in NIH spending on ME/CFS research … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , | 13 Comments

NIH 2017 Funding Fact-Check

Posted on July 23, 2018 by Jennie Spotila

Today, we need to revisit and reconcile NIH’s funding numbers for FY 2017. NIH is reporting that it spent $15 million dollars on ME/CFS research last year, but this includes several non-ME/CFS studies. The truth is that NIH actually spent … Continue reading →

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

NIH Time Warp

Posted on June 7, 2018 by Jennie Spotila

Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt: First, … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , | 13 Comments

All The Time and None At All

Posted on April 25, 2018 by Jennie Spotila

Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge. Dr. Collins said, “Research, done … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 58 Comments

FINALLY: RFA Funding Announced

Posted on September 27, 2017 by Jennie Spotila

This post was last updated on September 30, 2017. Edits are clearly indicated in the text. At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 23 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