Tag Archives: transparency

The 2020 NIH Funding Fact Check

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

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

The 2020 Numbers Based on currently available numbers, NIH spent $11,696,985 on investigator-initiated grants and the Collaborative Research Centers in FY2020 (see note 1) That is basically flat with 2019 and 2018 spending. Here is how 2020 compared to 2019. … Continue reading

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

Rest In Power, CFSAC

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

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

All The Time and None At All

Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge. Dr. Collins said, “Research, done … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , , | 58 Comments

FINALLY: RFA Funding Announced

This post was last updated on September 30, 2017. Edits are clearly indicated in the text. At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for … Continue reading

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , , , | 23 Comments