Tag Archives: politics

For Serious?

Posted on November 25, 2017 by Jennie Spotila

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

Posted on November 1, 2017 by Jennie Spotila

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

Posted on October 3, 2017 by Jennie Spotila

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

Posted on September 21, 2017 by Jennie Spotila

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

NIH Attitudes Affect Policy: A Story In Two Parts

Posted on June 27, 2017 by Jennie Spotila

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 , , , , , , , , , , , , , , , , | 45 Comments

CDC Hilarity

Posted on June 22, 2017 by Jennie Spotila

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 , , , , , , , , , | 21 Comments

CFSAC: Second Verse, Same as the First

Posted on June 19, 2017 by Jennie Spotila

Another CFS Advisory Committee meeting is upon us. The webinar meeting will be held on June 29th and 30th. And as has been the case in the past, the federal approach to the Committee appears lackadaisical. This bare minimum effort … Continue reading →

Posted in Advocacy | Tagged , , , , , , | 19 Comments

PACE-Gate: Continue Tuller’s Work

Posted on May 28, 2017 by Jennie Spotila

Journalist David Tuller is well-known to the ME community. His series Trial By Error on Virology blog launched PACE-Gate into the scientific mainstream. Since that series began, Tuller has also written about the devastating effects of PACE-style “treatments,” garnered support … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , | 10 Comments

Preconditions, Burdens and Ableism

Posted on May 10, 2017 by Jennie Spotila

Who are we, as people with ME? Are we “patients”? Are we defined by the disease and its impact on our lives? Which comes first: me or ME? This is a question of identity, and how language can bestow or … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , , | 18 Comments

The Halfway Point

Posted on April 26, 2017 by Jennie Spotila

We are halfway through fiscal year 2017. How much money has NIH spent on ME/CFS research so far this year, and where will we end up? The short version is: based on current spending, we are unlikely to hit the … Continue reading →

Posted in Research | Tagged , , , , , , , , , , , , , | 6 Comments