Tag Archives: priorities

NIH Funding for ME Needs Life Support

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 , , , , , , , , , , , , , , , , | Leave a comment

NIH Funding for ME in 2019: The Details

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 , , , , , , , , , , , , , , , | 7 Comments

I’ve Missed You

I’ve missed you, my lovelies! I dropped off the grid for awhile in hopes of making progress on my book. I wrote some words. I also saw some beautiful things, and visited beloved friends and family. My husband and I … Continue reading

Posted in Occupying | Tagged , , , , , , , , , , , , , , , , | 41 Comments

I’ll Make It Simple

Dr. Jose Montoya has been fired from Stanford University after an investigation into alleged violations of Stanford’s rules of conduct, including sexual harassment, misconduct and assault. The Stanford Daily published an anonymous statement from a group of people affected by … Continue reading

Posted in Commentary | Tagged , , , , , , , , , | 63 Comments

Another NIH Funding Fact Check

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

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

Dr. Collins: Transcript of Remarks on April 5, 2019

Dr. Francis Collins addressed the Accelerating Research in ME/CFS meeting for ten minutes this morning. This is my best effort at a transcript of those comments. Thank you, Walter. I’m really glad to be able to be here for at … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , , , | 19 Comments

NIH Deadlines

In the next two weeks, there are three important opportunities for the ME community to engage with NIH. April 4th and 5th: NIH is hosting the Accelerating Research on ME/CFS Meeting. Take a look at the agenda and invited speakers. … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , | Comments Off on NIH Deadlines

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