Monthly Archives: November 2015

A Year of Thanks

Posted on November 24, 2015 by Jennie Spotila

This year has been hard, y’all. HARD. Sometimes I think that my Mom’s death took a scoop of my soul along with her. And then just over six months later, my husband (my caregiver, my best friend, my everything) had … Continue reading →

Posted in Occupying | Tagged , , , , , | 8 Comments

Add Your Voice to the Call to Investigate PACE

Posted on November 18, 2015 by Jennie Spotila

(reprinted with permission) Twelve U.S. ME/CFS organizations have called on the Centers for Disease Control and Prevention (CDC) and Agency for Health Research & Quality (AHRQ) calling on them to investigate the PACE trial concerns outlined by David Tuller and … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , | 2 Comments

A Request That Should Not Be Ignored

Posted on November 13, 2015 by Jennie Spotila

Six scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data. The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards … Continue reading →

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

Someone Had To Say It

Posted on November 10, 2015 by Jennie Spotila

A long story about this moment in ME/CFS research and advocacy by journalist Virginia Gewin was published in Mosaic, a publication of the Wellcome Trust today. The article includes a great profile of Dr. Lenny Jason, coverage of the PACE … Continue reading →

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

FDA Progress on Measuring Outcomes

Posted on November 9, 2015 by Jennie Spotila

I have an update on the progress of the ME/CFS Outcomes Measures Working Group working with FDA. As I reported in March 2015, the FDA helped convene a Working Group comprised of representatives from FDA, NIH, CDC, and academia in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 16 Comments

The NIH Plan

Posted on November 4, 2015 by Jennie Spotila

(updated November 9, 2015) Unless you have been avoiding the internet for the last week, you already know that NIH has made a big announcement regarding its plans for ME/CFS research. Dr. Francis Collins has made some remarkable and welcome … Continue reading →

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