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Tag Archives: transparency
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
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
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
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 accountability, action, biomarkers, CPET, funding, government, grants, NIH, participation, partnership, pathogen discovery, pathogenesis, patients, post-exertional malaise, priorities, researchers, RFA, spending, transparency, updated
23 Comments
Small Steps of Progress
Progress, no matter how small, is still progress. Any tiny incremental change advocates can achieve is improvement, and it’s important to acknowledge when it happens. I am pleased to report that NIH has taken a small step towards providing more … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grant review, grants, NIH, priorities, recommendations, researchers, SEP, speaking out, spending, transparency
21 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 →