Category Archives: Advocacy

NIH Funding for ME Goes Down in 2018

Posted on October 21, 2018 by Jennie Spotila

Updated May 29 and October 16, 2019 with additional funding numbers. Fiscal year 2018 is over, so now we can answer the question of whether ME research funding at NIH would go up or down. As I predicted back in … Continue reading →

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Protesting Per Fink

Posted on October 12, 2018 by Jennie Spotila

#MEAction New York is holding a protest at Columbia University on Saturday, October 20, 2018 against the misinformation about ME that Dr. Per Fink is spreading to New York medical providers at the 4th Columbia Psychosomatics Conference. Who is Per … Continue reading →

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Rest In Power, CFSAC

Posted on September 7, 2018 by Jennie Spotila

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) is dead. Both the website and the email listserv made the announcement on September 6th: “The charter for the Chronic Fatigue Syndrome Advisory Committee expired on September 5, 2018.” A sudden death under … Continue reading →

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In Healthcare, Be Squeaky

Posted on August 13, 2018 by Jennie Spotila

As the saying goes, the squeaky wheel gets the grease. This is particularly true in healthcare, where you are dealing with big systems that don’t always talk to each other. Today, I will tell you the story of how I … Continue reading →

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How Much Will NIH Spend in 2018?

Posted on July 30, 2018 by Jennie Spotila

Fiscal year 2018 is almost over, and I have calculated how much NIH is likely to spend on ME research this year. The short answer? Based on current numbers, I project a 17.6% decrease in NIH spending on ME/CFS research … Continue reading →

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NIH 2017 Funding Fact-Check

Posted on July 23, 2018 by Jennie Spotila

Today, we need to revisit and reconcile NIH’s funding numbers for FY 2017. NIH is reporting that it spent $15 million dollars on ME/CFS research last year, but this includes several non-ME/CFS studies. The truth is that NIH actually spent … Continue reading →

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How To Represent

Posted on July 16, 2018 by Jennie Spotila

Last month, I had my first chance to serve on an FDA Advisory Committee as a Patient Representative. I had a lot to learn about the drug under consideration, but I also learned how to use my individual perspective to … Continue reading →

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NIH Forms New Working Group on ME/CFS

Posted on June 22, 2018 by Jennie Spotila

NIH recently announced that it is forming a new Working Group on ME/CFS. The announcement is very low on specifics, but this Working Group has the potential to make a big impact on research at NIH. Dr. Walter Koroshetz, Director … Continue reading →

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Public Comment on Engaging People with ME

Posted on June 20, 2018 by Jennie Spotila

I delivered these comments via telephone today at the CFS Advisory Committee meeting: My name is Jennifer Spotila. I will soon begin my 25th year of living with ME. People with ME know this disease. We have valuable insights and … Continue reading →

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NIH Time Warp

Posted on June 7, 2018 by Jennie Spotila

Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt: First, … Continue reading →

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