Tag Archives: politics

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

Missing, Not Marching

Posted on April 22, 2017 by Jennie Spotila

I should be marching right now. I mean, I had my plans all worked out. #MillionsMissing tshirt? Check. Wheelchair wheels freshly pumped up? Check. Water and food? Check. Ride to March? Check. Kick ass awesome sign made by my husband? … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , , , , , , , , , , , | 31 Comments

Help My Sign!

Posted on April 17, 2017 by Jennie Spotila

I am suuuppppperrrrr excited for the March for Science this Saturday, April 22nd. I am doing everything humanly possible to attend. I’ve got extra rest scheduled this week, and a backup ride the day of the March (in case ride … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , | 62 Comments

The Cut

Posted on March 17, 2017 by Jennie Spotila

Trump’s proposed budget is out. Among all the cuts – because you have to cut in order to increase defense spending while simultaneously giving the rich a tax cut – among all these cuts is one that people with ME … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , | 13 Comments

Resist. Persist.

Posted on February 21, 2017 by Jennie Spotila

Am I the only person who feels like she is in a leaky boat, surrounded by sharks? Pretty much every time I look at Facebook, Twitter or the news, I find another leak in the boat. And when I look … Continue reading →

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