Category Archives: Advocacy

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

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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

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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

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#MillionsMissing 2019

We are the disappeared The vanished The millions missing Blink Snap your fingers Gone Do you miss us? Does anyone ask what happened to us? Does it cross your mind that we are still very much alive? We think of … Continue reading

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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

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Return on Investment II: David Tuller

Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also … Continue reading

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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

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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

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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

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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

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