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Tag Archives: accountability
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
The 2020 NIH Funding Fact Check
It is time, once again, for my annual NIH funding fact check. And, once again, NIH’s numbers do not add up. NIH claims to have spent $15 million on ME/CFS research in 2020. In reality, NIH spent slightly under $13 … Continue reading
Posted in Advocacy, Research
Tagged accountability, accuracy, action, activism, funding, government, grants, NIH, priorities, researchers, speaking out, spending, transparency
7 Comments
David Tuller: Crowdfunding for Us All
I have supported David Tuller’s investigative journalism since he first began his crowdfunding campaigns,* but it has never been more important than right now. I urge you to join me in supporting his current fundraiser not only for yourself, but … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, antiscience, CBT, CDC, covid-19, exercise, funding, GET, Long COVID, long haulers, PACE, pacing, politics, post-exertional malaise, psychogenic, psychosocial, speaking out, treatment
1 Comment
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
Posted in Advocacy, Commentary, Research
Tagged accountability, analysis, bias, experts, FOIA, funding, government, grant review, grants, NIH, prejudice, priorities, recommendations, researchers, RFA, scrutiny, SEP, speaking out, spending, stigma, strategy, transparency
39 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
The 2019 NIH Funding Fact Check
NIH claims to have spent $15 million on ME/CFS research in 2019. However, my examination of the details shows that NIH actually spent $13 million, which means NIH is exaggerating its spending by 14%. This gap between reality and NIH’s … Continue reading
Posted in Advocacy, Research
Tagged accountability, accuracy, action, activism, funding, government, grants, NIH, priorities, researchers, RFA, speaking out, spending
11 Comments
David Tuller: Making Progress Together
For the past four years, I have supported David Tuller’s investigative journalism through his crowdfunding campaigns. I urge you to join me in supporting his current fundraiser so that he can continue his work. Five years ago this month, David … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, CBT, CDC, exercise, funding, GET, PACE, politics, psychogenic, psychosocial, speaking out
Comments Off on David Tuller: Making Progress Together
How Pandemic Response Measures Harm People With Disabilities
The coronavirus pandemic is reshaping all our lives. With more than six million confirmed infections in the United States, we are living through a seismic cultural event impacting how we work, learn, socialize, and function. For people with disabilities, like … Continue reading
Posted in Commentary
Tagged ableism, accountability, activism, adapting, bias, coping, covid-19, crisis, disability, masks, pandemic, policy, priorities, public health, social isolation
10 Comments
New York Magazine Article Biased and Riddled with Errors
Today I sent the following email to the Editor of New York Magazine: As a reader of New York Magazine, I have come to expect your articles to be accurate, well-researched, and fair. Unfortunately your recent piece, “Has Long COVID … Continue reading →