Tag Archives: government

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

Fireworks

Posted on May 26, 2013 by Jennie Spotila

I will be posting a summary of what we learned (or didn’t learn) at last week’s CFS Advisory Committee meeting, but one incident requires detailed examination. Towards the end of the second day, conflict erupted between several committee members, allegations … Continue reading →

Posted in Advocacy | Tagged , , , , , | 21 Comments

CFSAC Testimony from Amy Squires

Posted on May 22, 2013 by Jennie Spotila

Amy Squires is my dear friend, and serves as Chairman of the Board of Directors of the CFIDS Association. She has given me permission to post the comments she made to the CFS Advisory Committee today. My name is Amy … Continue reading →

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

What To Look For

Posted on May 20, 2013 by Jennie Spotila

The CFS Advisory Committee will meet on Wednesday and Thursday this week (May 22nd and 23rd). The meeting will be webcast, and I’ll update with that information as soon as it becomes available. UPDATED: To call in to the CFSAC … Continue reading →

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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

CFSAC Input Template

Posted on May 10, 2013 by Jennie Spotila

If you subscribe to the CFS Advisory Committee email list, then you may have seen the preliminary agenda that went out last night. The High Priority recommendations list was not on it BUT we have confirmed with Dr. Nancy Lee … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 3 Comments

Why and How to CFSAC

Posted on May 9, 2013 by Jennie Spotila

I wrote an article for Phoenix Rising about a few things we can expect at the upcoming CFS Advisory Committee meeting on May 22-23rd. Today I want to focus on why you should participate, and how to do so. This … Continue reading →

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