Tag Archives: priorities

The Truth Is Not Always Nice

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

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

FINALLY: RFA Funding Announced

This post was last updated on September 30, 2017. Edits are clearly indicated in the text. At long last, NIH has announced the awards of RFA funding to three Collaborative Research Centers and a Data Management and Coordinating Center for … Continue reading

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My “Summer Vacation”

What I’ve done on my “summer vacation” has not been fun. I’ve had a rough couple of months. Non-ME health issues have gobbled up most of my capacity, and I’m still feeling the repercussions. I’m not ready to talk about … Continue reading

Posted in Occupying | Tagged , , , , , , , , , , , , , , | 42 Comments

Grant Review

Disclosure: I participated in the preparation of one of the Collaborative Research Center applications. Today and tomorrow, the applications for ME/CFS Collaborative Research Centers and Data Coordinating Center are undergoing peer review at NIH. It’s a very important stage in … Continue reading

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

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

Posted in Advocacy | Tagged , , , , , , , , , | 21 Comments

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

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

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

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

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

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