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Tag Archives: strategy
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
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 accountability, analysis, bias, experts, FOIA, funding, government, grant review, grants, NIH, priorities, recommendations, researchers, RFA, scrutiny, SEP, speaking out, spending, strategy, transparency
30 Comments
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
Responding to the NIH RFI
For the first time, NIH has requested public input into the future direction of ME/CFS research. This is a chance for researchers, organizations, advocates, and others to provide input directly to the Trans-NIH ME/CFS Working Group on the following questions: … Continue reading
Posted in Advocacy, Research
Tagged action, clinical trials, DHHS, funding, government, grants, NIH, priorities, recommendations, researchers, response, speaking out, strategy
31 Comments
A New Strategic Plan
The National Institutes of Health is creating its first strategic plan, at the request of Congress. The public now has an opportunity to comment, and this is an important opportunity to reinforce the need for ME/CFS research funding. Liz Willow … Continue reading
Posted in Advocacy
Tagged DHHS, funding, government, grants, NIH, politics, priorities, recommendations, researchers, speaking out, spending, strategic plan, strategy, treatment
2 Comments
Directional Signs
Last week, the CFIDS Association announced the formation of a Research Advisory Council and its newly appointed members. A close look at the roster reveals some interesting signs about the direction the Association may be headed, and it may surprise … Continue reading
Posted in Research
Tagged advisory, CFIDS Association, drugs, researchers, strategy, treatment
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 →