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 , , , , , , , , , , , , , , , , , , , , | 50 Comments

One Dance: Millions Missing 2018

I was never a talented dancer, but I loved it. I quit ballet lessons when I was in the 3rd grade because it was hard. I struggled to learn the simple choreography in school musical productions. I never learned to … Continue reading

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , | 23 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 , , , , , , , , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , , , , , | 20 Comments

Expectations

Unrest, Jen Brea’s documentary about ME, will be shown on PBS stations around the United States on Monday night – January 8th. The film is already available worldwide, and is short-listed for an Oscar nomination (my review of the film … Continue reading

Posted in Advocacy, Commentary, Occupying | Tagged , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 27 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 , , , , , , , , | 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 , , , , , , , , , , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , , , , | 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 , , , , , , , , , , , , , , , , , , , | 34 Comments