Tag Archives: funding

Need to Reality

Posted on August 5, 2013 by Jennie Spotila

One of the key moments of the April FDA meeting on drug development for ME/CFS was when Bernard Munos said that ME/CFS patients will have to collect and pool their data to attract the interest of big pharma. Many advocates … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 7 Comments

No Facts for YOU!

Posted on June 6, 2013 by Jennie Spotila

The NIH funding argument is a broken record: Advocates and researchers say, “We want more funding!” NIH replies, “We need more applications!” And advocates and researchers reply, “Your review panel is made up of dentists!” Back and forth. Back and … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , | 14 Comments

Perplexed

Posted on June 3, 2013 by Jennie Spotila

The good news, I guess, is that we survived another CFS Advisory Committee meeting. The bad news is that much of what happened made no sense to me. Some excellent summaries of the meeting are available, including this very detailed … Continue reading →

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

Drug and FDA News, May 2013

Posted on May 30, 2013 by Jennie Spotila

Yesterday, the CFIDS Association formally announced what had been rumored to be on the way: they are preparing to file an Investigational New Drug application. The first step will be a pre-IND meeting with FDA. This kind of meeting is … Continue reading →

Posted in Research | Tagged , , , , , , , | 4 Comments

CFSAC Testimony May 2013

Posted on May 22, 2013 by Jennie Spotila

I submitted two versions of testimony to the May 22-23, 2013 CFS Advisory Committee meeting. My written testimony can be viewed here.  What follows is the testimony I delivered by telephone this morning: My name is Jennifer Spotila, and I … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 18 Comments

2012 NIH Spending on CFS Studies

Posted on May 15, 2013 by Jennie Spotila

Update: This post was revised on October 29, 2016 to correct mathematical errors and update the included research. NIH spending on ME/CFS research has been controversial since I’ve been in advocacy, largely because the funding numbers are so low compared … Continue reading →

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

Moving On Up

Posted on May 1, 2013 by Jennie Spotila

For years, the Pacific Fatigue Lab at the University of the Pacific has done the best research on exercise and ME/CFS. Staci Stevens, Dr. Chris Snell, and their collaborators perfected the use of two-day cardio-pulmonary exercise testing (CPET) in people … Continue reading →

Posted in Occupying, Research | Tagged , , , , , , , , | 1 Comment

Research Recommendations

Posted on March 12, 2013 by Jennie Spotila

See Part One – Tangled Web See Part Two – CFSAC Specific Recommendations See Part Three – Care and Services Recommendations See Part Four – Education and Training Recommendations Appropriately enough, the CSFAC has made more recommendations on research than … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , | 1 Comment

NIH Collaboration

Posted on December 17, 2012 by Jennie Spotila

The news didn’t make much of a splash, but NIH recently issued a funding opportunity announcement that could benefit people with CFS. This purpose of this funding opportunity is to support “collaborative translational research projects” aimed at turning basic discoveries … Continue reading →

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CFSAC Testimony of Dr. Joan Grobstein

Posted on November 8, 2012 by Jennie Spotila

Dr. Joan Grobstein delivered these comments to the CFS Advisory Committee at its October 3-4, 2012 meeting. She has kindly given me permission to publish them here. Hello.  I’m Dr. Joan Grobstein.  I’m a physician. My topic is responsibility. Recently … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , | 4 Comments