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Tag Archives: politics
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
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
CDC Website Update
In this guest post, Mary Dimmock summarizes the latest updates to CDC’s ME/CFS website. In early July, the Centers for Disease Control and Prevention (CDC) replaced its website for myalgic encephalomyelitis (ME), previously called chronic fatigue syndrome (CFS) and now … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, case definition, CBT, CDC, CFSAC, DHHS, exercise, fatigue, GET, government, guest post, IOM, medical education, PACE, pacing, politics, post-exertional malaise, recommendations, speaking out, treatment
34 Comments
NIH Attitudes Affect Policy: A Story In Two Parts
The current situation for ME research at NIH is still a problem, despite the fact that the RFAs will increase spending on ME by a significant percentage. I say this based on two things: what the ME field needs to … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, activism, advocacy, anger, blame, Centers of Excellence, funding, government, mental illness, NIH, occupy, politics, psychosocial, researchers, RFA, speaking out, stereotypes
45 Comments
CDC Hilarity
Over the years, I have filed many FOIA requests, and I have learned that it can take a long time to get a response. But CDC takes the cake. In my experience, all the agencies meet the statutory requirement of … Continue reading
Posted in Advocacy
Tagged action, CDC, DHHS, FOIA, government, hilarious, IOM, politics, priorities, speaking out
21 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 →