Tag Archives: action

RFA Ticker, 4/4/16

Posted on April 4, 2016 by Jennie Spotila

Last week was a big one for RFA news. NIH issued revised responses to the August 2015 CFS Advisory Committee recommendations. Regarding RFAs, NIH said: “The Trans-NIH ME/CFS Working Group is in the final stages of putting together a comprehensive … Continue reading →

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Epic Eye Roll

Posted on April 2, 2016 by Jennie Spotila

I had a shocking experience at a doctor’s office yesterday. It was my first visit to his office for an issue unrelated to ME/CFS. After breezing into the room and making a sarcastic remark about the quality of doctors’ notes … Continue reading →

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We Are All Noncompliant

Posted on March 2, 2016 by Jennie Spotila

I learned something about ME/CFS advocacy from a comic book. Now wait, stay with me. I realize this sounds bizarre, especially coming from me. I haven’t read a comic book since I was eight years old. Enter Bitch Planet, a … Continue reading →

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2015 NIH Spending on ME/CFS Studies

Posted on February 17, 2016 by Jennie Spotila

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. Since Dr. Collins’s announcement in October 2015 that NIH was renewing its focus on ME/CFS, I’ve been wondering when we would see … Continue reading →

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NIH: Who Reviewed Grants in 2015

Posted on January 28, 2016 by Jennie Spotila

In order to get NIH funding, a researcher has to succeed in several levels of application review. A persistent controversy in the field of ME/CFS is the allegation that grant applications are not reviewed by ME/CFS experts. So let’s take … Continue reading →

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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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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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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 →

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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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