Author Archives: Jennie Spotila

A Request That Should Not Be Ignored

Posted on November 13, 2015 by Jennie Spotila

Six scientists have sent a joint letter to the Editor of The Lancet asking for an independent re-analysis of the PACE trial data. The letter, published today on Virology Blog, is signed by Dr. Ron Davis (Stanford), Dr. Jonathan Edwards … Continue reading →

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

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 →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , , | 11 Comments

FDA Progress on Measuring Outcomes

Posted on November 9, 2015 by Jennie Spotila

I have an update on the progress of the ME/CFS Outcomes Measures Working Group working with FDA. As I reported in March 2015, the FDA helped convene a Working Group comprised of representatives from FDA, NIH, CDC, and academia in … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , | 16 Comments

The NIH Plan

Posted on November 4, 2015 by Jennie Spotila

(updated November 9, 2015) Unless you have been avoiding the internet for the last week, you already know that NIH has made a big announcement regarding its plans for ME/CFS research. Dr. Francis Collins has made some remarkable and welcome … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , | 23 Comments

21

Posted on October 9, 2015 by Jennie Spotila

October 6, 2015 was my 21st “sickaversary.” I know the date because the onset of ME/CFS in my case was so sudden and dramatic. Not a single doctor told me that I could be sick for years. Not a single … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 49 Comments

A Miracle, and a Break

Posted on August 28, 2015 by Jennie Spotila

This year has been the most difficult of my life, starting with my Mom’s passing in January. Losing her was just the first in a cascade of bad news, and I made the decision to stop maintaining that laundry list … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , | 25 Comments

CFSAC Testimony, Jennie Spotila, August 18, 2015

Posted on August 17, 2015 by Jennie Spotila

Unfortunately, I am too sick to offer public comment by telephone for the August 18-19, 2015 meeting of the CFS Advisory Committee. I submitted these written comments for the record. Thank you to all of the advocates who are speaking … Continue reading →

Posted in Uncategorized | Tagged , , , , , , , , , , , , , , , , , | 28 Comments

CDC: Speculations and Consequences

Posted on August 12, 2015 by Jennie Spotila

Controversy continues over the Senate appropriations committee report’s recommendation that the CDC’s CFS program funding be eliminated for FY 2016. We have certainly debated the merits and faults of the program from just about every angle on this blog. But … Continue reading →

Posted in Advocacy, Commentary | Tagged , , , , , , , , , , , | 74 Comments

No CDC Funding for CFS?

Posted on August 4, 2015 by Jennie Spotila

ME/CFS advocates focus almost exclusively on research funding from the National Institutes of Health, and with good reason. But now it appears that funding for the Centers for Disease Control’s CFS program may be at risk in the 2016 appropriations … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 225 Comments

Deadlines and Opportunities

Posted on July 30, 2015 by Jennie Spotila

There are a number of opportunities for ME/CFS advocacy right now – all of which you can do on your own from home! Here are the details: CFS Advisory Committee Public Comment: The Federal Register notice for the August 18-19th … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , | 6 Comments