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Tag Archives: government
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 accountability, action, biomarkers, case definition, collaboration, Collins, drugs, funding, government, hope, IOM, meeting, NIH, politics, priorities, researchers, strategy, transcript
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 action, government, Millions Missing, NIH, priorities, recommendations, researchers, response, speaking out, strategy
Comments Off on NIH Deadlines
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 accountability, action, bias, experts, frustration, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, SEP, speaking out, spending, stigma, strategy
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 accountability, action, bias, experts, frustration, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, SEP, speaking out, spending, stigma, strategy
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 accountability, action, activism, anger, blame, conference, council, funding, government, grants, Millions Missing, NIH, occupy, politics, priorities, researchers, RFA, speaking out, spending, working group, workshop
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 accountability, action, CFSAC, Congress, DHHS, government, living with, Millions Missing, occupy, politics, priorities, protest, recommendations, represent, resist, respect, speaking out, testimony, transparency
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 accountability, accuracy, action, funding, government, grant review, grants, Millions Missing, NIH, portfolio, priorities, researchers, RFA, speaking out, spending, transparency
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 accountability, accuracy, action, categories, fatigue, funding, government, grant review, grants, NIH, portfolio, researchers, speaking out, spending, transparency
11 Comments
How To Represent
Last month, I had my first chance to serve on an FDA Advisory Committee as a Patient Representative. I had a lot to learn about the drug under consideration, but I also learned how to use my individual perspective to … Continue reading
Posted in Advocacy
Tagged abuse deterrence, action, drugs, engagement, FDA, government, opioid, pain, participation, patients, represent, representative, speaking out, substance abuse, suffering, treatment
13 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 →