Tag Archives: government

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 →

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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

Best Practices

Posted on April 6, 2017 by Jennie Spotila

How can people with ME be more engaged in research? I mean really, meaningfully engaged from the design phase all the way through to the dissemination phase? I have an answer! With the help of #MEAction, I led a group … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , | 11 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

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 →

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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 →

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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 →

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RFA Ticker, 1/30/17

Posted on January 30, 2017 by Jennie Spotila

At long last, the promised RFAs are here. Last week NIH published the RFA for the Collaborative Research Centers and the Data Management and Coordinating Center. Unfortunately, my mother-in-law passed away last week. Between that and other sources of upheaval, … Continue reading →

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RFA Ticker, 1/23/17

Posted on January 23, 2017 by Jennie Spotila

Second verse same as the first. The wait continues. Two dates are coming: January 31st, by which Dr. Francis Collins said the RFAs would be issued. February 1st, on which NIH will hold another ME/CFS advocacy call. Call-in information has … Continue reading →

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