Tag Archives: government

A Million More, and Counting

Posted on May 12, 2022 by Jennie Spotila

Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with … Continue reading →

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

The 2020 NIH Funding Fact Check

Posted on August 9, 2021 by Jennie Spotila

It is time, once again, for my annual NIH funding fact check. And, once again, NIH’s numbers do not add up. NIH claims to have spent $15 million on ME/CFS research in 2020. In reality, NIH spent slightly under $13 … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 7 Comments

The Death Threat Myth Exposed

Posted on April 6, 2021 by Jennie Spotila

Update April 7, 2021: Further comment from Dr. Vicky Whittemore added to the end of this post. Last week, an old story was recounted to a new audience. During the March 30, 2021 NIH telebriefing with the ME/CFS community, Dr. … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , , | 39 Comments

NIH Funding for ME in 2020: Falling Flat

Posted on November 6, 2020 by Jennie Spotila

NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead. Image credit: Off the Charts, AJN … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , | 7 Comments

The 2019 NIH Funding Fact Check

Posted on October 28, 2020 by Jennie Spotila

NIH claims to have spent $15 million on ME/CFS research in 2019. However, my examination of the details shows that NIH actually spent $13 million, which means NIH is exaggerating its spending by 14%. This gap between reality and NIH’s … Continue reading →

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

I Want To Scream

Posted on October 14, 2020 by Jennie Spotila

I feel like screaming a lot these days. I’ve been following distancing/isolation guidelines for 217 days and counting, and it’s hard. Reading the news usually leads to doomscrolling on social media. Honestly, there are so many distressing and maddening things … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , | 37 Comments

NIH Funding for ME Needs Life Support

Posted on November 7, 2019 by Jennie Spotila

Fiscal year 2019 is over, and we can now examine how much NIH spent on ME research. In previous years, I’ve broken down the funding at a granular level. I have done that in a separate post for those who … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , | 2 Comments

NIH Funding for ME in 2019: The Details

Posted on November 7, 2019 by Jennie Spotila

Every year, I take a careful look at the funding that NIH reports it spent on ME research. Normally, this is mostly a number crunching exercise, but this year I wrote an entire post about a serious problem I discovered … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , | 12 Comments

Another NIH Funding Fact Check

Posted on May 29, 2019 by Jennie Spotila

In April 2019, NIH finally published their funding numbers for ME/CFS research in 2018. That means it is time for another fact-check and correction! Update October 16, 2019: as explained below, I received more accurate numbers from NIH and have … Continue reading →

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

I Want To Believe Dr. Collins, But I Don’t

Posted on April 17, 2019 by Jennie Spotila

Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the meeting on Accelerating Research on ME/CFS. For the ten minutes he was present, Dr. Collins said a lot of nice … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , | 24 Comments