Tag Archives: speaking out

Book Review: Through the Shadowlands

Posted on May 23, 2017 by Jennie Spotila

Julie Rehmeyer is a science writer and person with ME who has written extensively about research and controversies like the PACE trial. But today, she publishes Through the Shadowlands, a book about her personal journey through ME and back to … Continue reading →

Posted in Commentary | Tagged , , , , , , , , , , | 7 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

RFA Ticker, 2/20/17

Posted on February 20, 2017 by Jennie Spotila

Following an excellent suggestion from J.A. on last week’s post, I have added a line to the table of cumulative RFA numbers. This line will track the RFA dollars committed to ME/CFS. I don’t expect it to change this year. … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | Comments Off on RFA Ticker, 2/20/17

RFA Ticker, 2/13/17

Posted on February 13, 2017 by Jennie Spotila

NIH issued one RFA last week, for cellular therapies to treat radiation injuries. In that one RFA, the National Institute of Allergy and Infectious Diseases committed $4 million for FY 2018. The maximum project length is five years, although future … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 4 Comments

RFA Ticker, 2/6/17

Posted on February 6, 2017 by Jennie Spotila

I have no words this week, friends. I’m tracking the numbers because that is all I can do. One announcement: The NIH Clinical Care Center study of post-infectious ME/CFS is now recruiting participants. You can see the flyer here, and … Continue reading →

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