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Category Archives: Advocacy
Fact Checking, Dr. Nath
This is the first of a two part series. Part One describes the controversy and my fact checking. Part Two will present my analysis of what I found. As part of the renewed focus on ME/CFS at NIH, the National … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, blame, government, NIH, NINDS, participation, politics, psychological, psychosocial, researchers, speaking out, stereotypes
29 Comments
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 accountability, action, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
6 Comments
AHRQ Evidence Review Changes Its Conclusions
Mary Dimmock has led the way on this issue, and is co-author of this post. In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, AHRQ, case definition, CBT, CDC, DHHS, evidence review, exercise, GET, government, living with, NIH, P2P, pacing, politics, psychosocial, recommendations, speaking out, systematic review, treatment
47 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 accountability, action, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
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 accountability, action, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, RFA Ticker, severe, speaking out, spending
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 accountability, action, activism, DHHS, funding, government, living with, Millions Missing, occupy, politics, priorities, recommendations, researchers, speaking out, spending, team work
18 Comments
RFA Ticker, 8/1/16
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 accountability, action, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
10 Comments
RFA Ticker, 7/25/16
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 accountability, action, funding, government, grants, NIH, politics, priorities, recommendations, researchers, RFA, RFA Ticker, speaking out, spending
8 Comments
Reality Checking, Dr. Nath
This is the second of a two part series. Part One described the controversy and my fact checking. Part Two presents my analysis of the potential danger to the Clinical Care study. As part of the renewed focus on ME/CFS … Continue reading →