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Category Archives: Research
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
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
NIH Forms New Working Group on ME/CFS
NIH recently announced that it is forming a new Working Group on ME/CFS. The announcement is very low on specifics, but this Working Group has the potential to make a big impact on research at NIH. Dr. Walter Koroshetz, Director … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, engagement, funding, government, grants, NIH, partnership, politics, priorities, recommendations, researchers, RFA, spending, stakeholders
8 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 accountability, blame, CFSAC, DHHS, funding, government, grants, NIH, politics, priorities, recommendations, speaking out, spending, transparency, treatment, XMRV
13 Comments
The NIH Pilot Program: Wait and See
MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, biomarkers, blame, case definition, DHHS, funding, government, grants, IOM, Millions Missing, NIH, occupy, politics, priorities, recommendations, researchers, RFA, speaking out, spending, treatment
50 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 accountability, action, anger, biomarkers, blame, funding, government, grants, living with, Millions Missing, NIH, noncompliant, occupy, politics, priorities, researchers, RFA, speaking out, spending, suffering, transparency
58 Comments
2017 NIH Spending on ME/CFS Research
It is time to analyze how NIH spent its investment in ME research in 2017. NIH has not yet issued its own tally for 2017 through the categorical spending page, so I can’t say for sure how much money NIH … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, biomarkers, CPET, funding, government, grants, NIH, orthostatic intolerance, pathogenesis, politics, post-exertional malaise, priorities, researchers, RFA, speaking out, spending, treatment
20 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 →