Author Archives: Jennie Spotila

RFA Ticker, 8/8/16

Posted on August 8, 2016 by Jennie Spotila

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

Posted on August 5, 2016 by Jennie Spotila

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

RFA Ticker, 8/1/16

Posted on August 1, 2016 by Jennie Spotila

Alrighty then. Last week? NIH issued more than $128 MILLION in RFAs. NIH has broken the $2.3 billion mark for Fiscal Year 2015. So the same week we found out about activist Tom Jarrett’s suicide? Diseases that are not ME … Continue reading →

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

DIY Brain Rehab

Posted on July 28, 2016 by Jennie Spotila

Cognitive difficulties are part and parcel of ME/CFS. Brain fog, memory problems, difficulty with focus and attention, and reduced processing speed are just a few of the deficits we deal with every day. And cognitive effort can cause post-exertional malaise … Continue reading →

Posted in Occupying | Tagged , , , , , , , | 40 Comments

RFA Ticker, 7/25/16

Posted on July 25, 2016 by Jennie Spotila

Well hey, another Monday! And guess what? It’s another Monday with no ME/CFS RFA to report! This is like a bad habit you cannot break. They say that the definition of insanity is repeating the same behavior and expecting a … Continue reading →

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 8 Comments

Naming

Posted on July 22, 2016 by Jennie Spotila

Do you notice anything different at the top of the page? Occupy CFS is now Occupy M.E. I thought long and hard about the change, and would like to share my reasoning. First of all, CFS is a crappy name. … Continue reading →

Posted in Advocacy, Occupying | Tagged , , , , , , , , , | 26 Comments

RFA Ticker, 7/18/16

Posted on July 18, 2016 by Jennie Spotila

Last week was awesome for researchers waiting on an RFA . . . at least for non-ME/CFS researchers anyway. NIH issued RFAs totaling more than $75 million, pushing the fiscal year total over the $2.2 billion mark. Life is especially … Continue reading →

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

RFA Ticker, 7/11/16

Posted on July 12, 2016 by Jennie Spotila

No RFAs for anybody last week. But there was a very interesting Request for Information issued last week that may have implications for ME/CFS research. The RFI requests information that might be useful in “the development of a comprehensive research … Continue reading →

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

Scandal

Posted on July 10, 2016 by Jennie Spotila

Give me 90 minutes. Whoever you are, whatever your connection to or interest in ME/CFS, take 90 minutes to listen to this discussion with academic/journalist David Tuller, DrPH (Lecturer at the School of Public Health and Graduate School of Journalism … Continue reading →

Posted in Advocacy, Commentary, Research | Tagged , , , , , , , , , , , , , , , , , | 19 Comments

RFA Ticker, 7/4/16

Posted on July 4, 2016 by Jennie Spotila

We are halfway through the calendar year 2016. There are only three months left in Fiscal Year 2016. We have no RFAs for ME/CFS. Time is slipping away. Total RFAs Issued by NIH: 249 (October 2015 to date) Total Dollars … Continue reading →

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