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Tag Archives: politics
The NIH Pilot Program: Wait and See
MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, biomarkers, blame, case definition, DHHS, funding, government, grants, IOM, Millions Missing, NIH, occupy, politics, priorities, recommendations, researchers, RFA, speaking out, spending, treatment
50 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
Posted in Advocacy, Commentary, Research
Tagged accountability, action, anger, biomarkers, blame, funding, government, grants, living with, Millions Missing, NIH, noncompliant, occupy, politics, priorities, researchers, RFA, speaking out, spending, suffering, transparency
58 Comments
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
For Serious?
It’s time for another round of “How Stupid Is This?” That’s a game I just invented. There are no rules, and definitely no prizes. Trust me. It’s a great game. It’s even more fun if you read this whole post … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, CFSAC, DHHS, government, occupy, politics, speaking out, stupid, testimony
39 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
NIH Time Warp
Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt: First, … Continue reading →