Tag Archives: NIH

Drinking From A Fire Hose

News is coming at the ME community at a crazy pace right now. Each time I go online, there is another controversial article that requires a response. First there was the NPR chronic pain piece and ensuing debacle. Then came … Continue reading

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

Who Reviews ME/CFS Applications for NIH?

Note: After publishing this post, I discovered that I had inadvertently missed one meeting in 2017. This post was updated on February 12, 2019 to reflect all new calculations. The changes are not significant enough to alter any conclusions. There … Continue reading

Posted in Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 30 Comments

NIH Obstacles Thwart ME Research

After I published my post on the NIH Obstacle Course (November 2018), readers’ reactions made clear that a shorter version of the article could be useful. Today, STAT published that shorter article in the First Opinion section. You can read … Continue reading

Posted in Commentary | Tagged , , , , , , , , , , , , , , , , , , | 5 Comments

NIH’s Obstacle Course to Success for ME/CFS Researchers

A shorter version of this article was published on STATNews on January 10, 2019. One message dominates NIH’s talk about ME/CFS research: submit more high quality grant applications. Funding would increase if there were more high quality grant applications. Give … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , | 9 Comments

NIH Funding for ME Goes Down in 2018

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

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 30 Comments

How Much Will NIH Spend in 2018?

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

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

NIH 2017 Funding Fact-Check

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

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

NIH Forms New Working Group on ME/CFS

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

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , | 8 Comments

Public Comment on Engaging People with ME

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

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

NIH Time Warp

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

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