Tag Archives: funding

Enough Is Enough

After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion … Continue reading

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , | 40 Comments

An Open Letter to Dr. Koroshetz

The following text is an open letter that I sent to Dr. Walter Koroshetz, Director of the National Institute of Neurological Diseases and Stroke. A plea for sanity, respect and science Dr. Koroshetz, I write to you tonight to personally … Continue reading

Posted in Advocacy, Commentary, Occupying, Research | Tagged , , , , , , , , , , , , , , , , , , , , , , | 52 Comments

2016 NIH Spending on ME/CFS Studies

Update: This post was revised on March 12, 2018 to reflect the addition of intramural research to the total. When I analyzed NIH’s spending on ME/CFS studies in Fiscal Year 2015, I concluded: The bottom line is that NIH is … Continue reading

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

RFA Ticker, 10/31/16

Among the $53 million in RFAs issued by NIH last week were two RFAs for pilot clinical trials in pediatric chronic kidney disease. These are significant for us because the RFAs establish a network of three participating clinical centers and … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 5 Comments

RFA Ticker, 10/24/16

Another huge week for RFAs at NIH! Last week alone, NIH issued 17 RFAs for a total of more than $94 million. ME/CFS research did not get an RFA, but we did get official news about the RFAs promised us … Continue reading

Posted in Advocacy, Research | Tagged , , , , , , , , , , , , , | 9 Comments

RFA Ticker, 10/17/16

Have you heard the expression “Go big or go home?” That is the perfect description of last week’s RFA totals. NIH only issued one RFA last week, but it was a big one. The set aside funding of $28,750,000 more … Continue reading

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

Tasha

There are many beautiful, powerful images from the September 27th Millions Missing protests. My friend Tasha spoke at the #MillionsMissing New York City event, and I’m proud to share her comments with you here. Hi, my name is Tasha and … Continue reading

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

Collins Responds to Congress

In September, fifty-five members of the House of Representatives sent NIH Director Dr. Francis Collins a letter in support of more ME/CFS research. Dr. Collins has now responded, but it is hardly satisfactory. You may recall that Representatives Lofgren and … Continue reading

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

RFA Ticker, 10/10/16

It’s a new year (in Washington DC, anyway). I didn’t have to turn the RFA Ticker back to zero, since that is where it was all of FY 2016. But here we are, so let’s get started on FY 2017. … Continue reading

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

RFA Ticker, FY 2016 Wrap Up

Fiscal Year 2016 ended on Friday, September 30th. Were you holding your breath for that ME research RFA? I hope not. NIH did not issue an RFA for ME research in FY2016. However, NIH did issue 352 RFAs in that … Continue reading

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