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Tag Archives: Millions Missing
A Million More, and Counting
Today is #MillionsMissing, a worldwide day of protest and awareness for the millions of people missing from their lives due to ME. We raise our voices on behalf of our own community, and also on behalf of our compatriots with … Continue reading
Posted in Advocacy
Tagged accountability, action, activism, covid-19, disability, government, Long COVID, long haulers, loss, Millions Missing, politics, priorities, respect, speaking out, suffering, visability
13 Comments
NIH Funding for ME in 2020: Falling Flat
NIH funding for ME/CFS research should be increasing each year. Everyone agrees that this is needed. Instead, 2020 funding has flatlined. Worse yet, we are in danger of falling off several cliffs looming ahead. Image credit: Off the Charts, AJN … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, accuracy, action, activism, covid-19, funding, government, grants, Millions Missing, NIH, politics, priorities, researchers, RFA, speaking out, spending, transparency
7 Comments
NIH Funding for ME Needs Life Support
Fiscal year 2019 is over, and we can now examine how much NIH spent on ME research. In previous years, I’ve broken down the funding at a granular level. I have done that in a separate post for those who … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, activism, conference, council, funding, government, grants, Millions Missing, NIH, occupy, politics, priorities, researchers, RFA, speaking out, spending
2 Comments
I Want To Believe Dr. Collins, But I Don’t
Dr. Francis Collins, Director of the National Institutes of Health, spoke to the ME community earlier this month at the meeting on Accelerating Research on ME/CFS. For the ten minutes he was present, Dr. Collins said a lot of nice … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, Collins, funding, government, grants, Millions Missing, NIH, politics, priorities, recommendations, researchers, RFA, speaking out, spending
24 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
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
Ten Years of Unreal Time
Ten years ago today, I tapped the internet microphone and published the very first post on this blog, then known as Occupy CFS. My intention was to step into the light, to bring attention to the disease by writing openly … Continue reading →