Tag Archives: priorities

CDC Hilarity

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

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The Halfway Point

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

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

Best Practices

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

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The Cut

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

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Resist. Persist.

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

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RFA Ticker, 2/20/17

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

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

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

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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