Category Archives: Advocacy

Long Term Disability Insurance/ERISA

Posted on January 16, 2016 by Jennie Spotila

If you are fortunate, then your employer provides you with disability insurance. When you become disabled, this insurance pays you a percentage of your salary, and you are not solely dependent on Social Security Disability. In real life, it is … Continue reading →

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Survey: Barriers to NIH Funding

Posted on January 12, 2016 by Jennie Spotila

Reprinted with permission of Lily Chu: Over the years, IACFS/ME Board members have heard anecdotally from researchers, clinicians, and others that obtaining government-sponsored funding for research related to ME/CFS can be quite challenging, in some cases more challenging than that … Continue reading →

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NIH RFA Ticker, 1/11/16

Posted on January 11, 2016 by Jennie Spotila

Total RFAs Issued by NIH: 103 (October 2015 to date) Total Dollars Committed to RFAs: $1,431,750,000 (October 2015 to date) Total RFAs for ME/CFS: ZERO (October 2015 to date) Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS 1/4/16 0 … Continue reading →

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NIH RFA Ticker, 1/4/16

Posted on January 4, 2016 by Jennie Spotila

Total RFAs Issued by NIH: 103 (October 2015 to date) Total Dollars Committed to RFAs: $1,431,750,000 (October 2015 to date) Total RFAs for ME/CFS: ZERO (October 2015 to date) Week Beginning RFAs Issued Total Commitment RFAs for ME/CFS 12/28/15 0 … Continue reading →

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NIH RFA Ticker, 12/28/15

Posted on December 28, 2015 by Jennie Spotila

Total RFAs Issued by NIH: 103 (October 2015 to date) Total Dollars Committed to RFAs: $1,431,750,000 (October 2015 to date) Total RFAs for ME/CFS: ZERO (October 2015 to date) Week Ending RFAs Issued Total Commitment RFAs for ME/CFS 12/21/15 3 … Continue reading →

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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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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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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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