Tag Archives: funding

Still #MillionsMissing

Today is another, larger #MillionsMissing protest, and I am missing it. I miss a lot of things. One of the best things I ever did in my life was to drive cross country, camping in national parks. It changed my … Continue reading

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

RFA Ticker, 9/26/16

We are down to the wire, friends. The #MillionsMissing protest is on the 27th, and we have millions upon millions missing from ME research at NIH. Specifically, NIH issued 15 RFAs last week for $62 million, but ME did not … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 3 Comments

RFA Ticker, 9/19/16

Imagine a woman waiting for a train. She has been waiting a long time, and the train is the only way to get to her destination. She waits as many other passengers get on their trains and proceed down the … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , | 15 Comments

RFA Ticker, 9/12/16

I have to admit, maintaining this RFA Ticker is a bit like watching a train wreck in slow motion. As the fiscal year winds down, and the RFAs slowly shrink in size and number, I keep asking “Will they or … Continue reading

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

RFA Ticker, 9/5/16

Another light week – a mere $11 million for diseases that are not ME. Cort Johnson reported that NIH is preparing two RFAs, one for collaborative research centers and one for a Data Management Coordinating Center. Marian Emr told me, … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 3 Comments

RFA Ticker, 8/29/16

Last week was surprisingly light for RFAs. NIH issued five RFAs, setting aside $14.3 million for those projects. One of the RFAs may be of particular interest to the ME community. The National Institute of Neurological Diseases and Stroke issued … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 1 Comment

RFA Ticker, 8/22/16

As I predicted, last week was another bonanza for RFAs. Another $130 million dollars was set aside, and NIH has now issued $2.6 billion in RFAs this fiscal year. There’s a package for clinical centers and a data coordinating center … Continue reading

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

RFA Ticker, 8/15/16

It’s a good thing I was forced to write this post lying down, because I might have passed out or thrown up when I saw the RFA totals for last week. Take precautions before you keep reading: NIH issued more … Continue reading

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

RFA Ticker, 8/8/16

August 8th is Severe ME Day, observed on Sophia Mirza‘s birthday. Today we remember and honor the memory of all ME patients who have left us (and there are too many). We also raise awareness about severe ME, and the … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , | 7 Comments

Meeting with the Assistant Secretary

As I mentioned in this week’s RFA Ticker, I participated in a meeting with the Assistant Secretary for Health Dr. Karen DeSalvo. You can read the meeting summary on MEAction, and I’ve reprinted the full text below. From a personal … Continue reading

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , | 18 Comments