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Tag Archives: speaking out
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
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
Protesting Per Fink
#MEAction New York is holding a protest at Columbia University on Saturday, October 20, 2018 against the misinformation about ME that Dr. Per Fink is spreading to New York medical providers at the 4th Columbia Psychosomatics Conference. Who is Per … Continue reading
Posted in Advocacy
Tagged accountability, action, activism, anger, antiscience, CBT, delusional, denial, discredited, exercise, GET, mental illness, Millions Missing, noncompliant, occupy, politics, post-exertional malaise, priorities, psychogenic, psychosocial, represent, researchers, resist, respect, speaking out, suffering, truth
27 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
After The Afflicted Freak Show
Many people in the chronic disease community were anticipating Afflicted, the Netflix series about seven people with poorly understood illnesses. In light of Jamison Hill‘s appearance in the show, the ME community hoped to build on the success of Unrest … Continue reading
Posted in Commentary
Tagged ableism, accountability, coping, disability, family, invisible, living with, mental illness, Millions Missing, occupy, pain, prejudice, psychogenic, psychological, psychosocial, speaking out, suffering, visability
18 Comments
Return on Investment II: David Tuller
Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also … Continue reading →