Author Archives: Jennie Spotila

Collaborative Effort Announced

Posted on December 22, 2015 by Jennie Spotila

I take the responsibility of advocacy very seriously, and collaborating with others is part of my philosophy. This effort is an organic evolution of work by many other advocates that have come before us. More than ever before, 2015 has … Continue reading →

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NIH RFA Ticker, 12/21/15

Posted on December 21, 2015 by Jennie Spotila

Total RFAs Issued by NIH: 99 (October 2015 to date) Total Dollars Committed to RFAs: $1,421,750,000 (October 2015 to date) Total RFAs for ME/CFS: ZERO (October 2015 to date) Week Ending RFAs Issued Total Commitment RFAs for ME/CFS 12/18/15 5 … Continue reading →

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The NIH RFA Ticker

Posted on December 14, 2015 by Jennie Spotila

Today, I’m debuting a new weekly feature that I call the NIH RFA Ticker. My goal is to give you the data you need to help assess whether NIH is doing all it can to promote and fund ME/CFS research. … Continue reading →

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Saying No

Posted on December 4, 2015 by Jennie Spotila

How To Live Well with Chronic Pain and Illness is Toni Bernhard’s latest book. I’ve reviewed Toni’s previous books (here, here, and here), but over the course of years, Toni has become one of my most beloved friends. So while … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , | 16 Comments

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 →

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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 →

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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 →

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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 →

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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 →

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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 →

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