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Tag Archives: action
Return on Investment: David Tuller
When journalist David Tuller asked for crowdfunding in 2017 to support his research and writing on ME for a year, he had already demonstrated his commitment to a rigorous examination of the many problems and issues associated with the PACE … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, CBT, CDC, exercise, funding, GET, occupy, PACE, politics, post-exertional malaise, psychosocial, speaking out, treatment
16 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
Doing Patient Engagement
One of my passions is engaging people with ME in research, and especially as more than just subjects of the research. That’s why I co-authored a report on best practices in patient engagement. As the NIH-funded Collaborative Research Centers kick … Continue reading
Posted in Advocacy, Research
Tagged action, collaboration, engagement, funding, government, grants, NIH, participation, partnership, patient, patients, researchers, RFA
7 Comments
The Truth Is Not Always Nice
My parents used to tell me, “If you can’t say something nice, then don’t say anything at all.” But they also raised me to tell the truth, especially when speaking to authority. I have to say some true things today, … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, activism, advocacy, advocacy groups, blame, conspiracy, fatigue, living with, nice, noncompliant, occupy, PACE, pejorative, politics, priorities, researchers, speaking out, stereotypes, tired, truth, voice, Walitt
27 Comments
Bottom of the Ramp
In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, biomarkers, funding, government, grants, NIH, orthostatic intolerance, pathogenesis, politics, priorities, researchers, RFA, speaking out, spending, suffering, treatment
22 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
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 →