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Category Archives: Advocacy
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 Coding Problem: Why No American Can Develop ME/CFS, Including After COVID
Guest post by Mary Dimmock Please sign this petition to fix the coding problem making Americans with ME/CFS invisible. If a tree falls in the forest, does it make a sound? And if an American develops ME/CFS, would the US … Continue reading
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
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
Not NICE
Last week, the ME community was expecting the National Institute for Health and Care Excellence (NICE) in the UK to publish new guidelines for the treatment of people with ME/CFS. Based on the draft guidelines published in November 2020, it … Continue reading →