Monthly Archives: July 2018

How Much Will NIH Spend in 2018?

Fiscal year 2018 is almost over, and I have calculated how much NIH is likely to spend on ME research this year. The short answer? Based on current numbers, I project a 17.6% decrease in NIH spending on ME/CFS research … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , , , | 12 Comments

NIH 2017 Funding Fact-Check

Today, we need to revisit and reconcile NIH’s funding numbers for FY 2017. NIH is reporting that it spent $15 million dollars on ME/CFS research last year, but this includes several non-ME/CFS studies. The truth is that NIH actually spent … Continue reading

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

How To Represent

Last month, I had my first chance to serve on an FDA Advisory Committee as a Patient Representative. I had a lot to learn about the drug under consideration, but I also learned how to use my individual perspective to … Continue reading

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