Category Archives: Advocacy

Don’t Silence Yourself

Posted on April 8, 2014 by Jennie Spotila

On May 5th, the IOM panel creating new diagnostic criteria for ME/CFS will hold its second public meeting. The only way you can provide input is by submitting written comments, unless you are an invited speaker. I’m here to plead … Continue reading →

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Demonstration Planned

Posted on April 5, 2014 by Jennie Spotila

May 12th – ME/CFS Awareness Day – is just over a month away. Plans for a demonstration are underway, via Erica Verillo. Erica is organizing a May 12th demonstration at HHS in San Francisco from noon-1 PM in front of … Continue reading →

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Congress: We Need An RFA

Posted on April 2, 2014 by Jennie Spotila

I am very happy to report that an effort is underway to secure Congressional support for a $7-10 million RFA for ME/CFS funding at NIH. And there is something YOU can do to help! Representative Zoe Lofgren (D-CA) and 10 … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 35 Comments

Reading Tea Leaves

Posted on March 24, 2014 by Jennie Spotila

In a report issued on March 12, the IOM panel tasked with creating a new case definition for Gulf War Illness declined to do so. This is the first time the IOM was attempting to create a disease case definition, … Continue reading →

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Not So FOIA

Posted on March 17, 2014 by Jennie Spotila

The problems ME/CFS advocates are having with Freedom of Information Requests are swiftly acquiring epic proportions. Jeannette Burmeister filed a lawsuit this year to compel release of documents for one of her FOIA requests. Patricia Carter has also filed FOIA … Continue reading →

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Exit Stage Right

Posted on March 13, 2014 by Jennie Spotila

Another CFS Advisory Committee member has resigned. After the March 11, 2014 CFSAC meeting, I emailed the Office of Women’s Health and asked for a list of who had attended the meeting. I tried to keep track of the roll … Continue reading →

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Silver Platter of Frustration

Posted on March 12, 2014 by Jennie Spotila

Yesterday’s CFS Advisory Committee meeting was insane. Wait, maybe the meeting just drove me insane. Or was the whole thing just insanely inane? I don’t even know anymore. Wait a second, hang on. Ok, let me start again. Yesterday’s CFS … Continue reading →

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Guidance to Industry

Posted on March 10, 2014 by Jennie Spotila

Last year, the FDA said it would be preparing Guidance to Industry on drug development for ME/CFS and now they have delivered. Guidance for Industry Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Developing Drug Products For Treatment* has been published in draft form, … Continue reading →

Posted in Advocacy, Research | Tagged , , , , | 13 Comments

Yay, and Also Boo

Posted on March 3, 2014 by Jennie Spotila

Yay! The CFS Advisory Committee will meet on Tuesday, March 11th from 12-5pm. This is the makeup day for the meeting cancelled on December 10, 2013. Boo! This is another webinar, and one can only hope the technical aspects will … Continue reading →

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Accurate and Precise

Posted on January 27, 2014 by Jennie Spotila

This is the text version of my presentation to the Institute of Medicine Panel today. I delivered my comments remotely, because a fever has kept me bedridden for three days. I tried to speak as naturally and extemporaneously as possible, … Continue reading →

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