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Author Archives: Jennie Spotila
CFS Advisory Committee Meeting Outcomes
The CFS Advisory Committee is charged with advising the Secretary of Health and Human Services on issues related to ME/CFS. HHS has a very patchy record in its responses to CFSAC recommendations, but the committee’s public meetings remain highly significant. … Continue reading
Posted in Advocacy
Tagged action, CDC, Centers of Excellence, CFSAC, DHHS, FDA, funding, ME, NIH, politics, priorities, recommendations, SMCI, speaking out, spending, testimony
7 Comments
CFSAC Comments, Terri Wilder
Editor’s note: Terri Wilder made these remarks at the May 18, 2016 meeting of the CFS Advisory Committee. I’m pleased to publish her complete comments, with her permission. For new readers, ME refers to myalgic encephalomyelitis, a neuroimmune disease. Good … Continue reading
Posted in Advocacy
Tagged action, CDC, FDA, funding, government, NIH, occupy, politics, priorities, recommendations, researchers, speaking out, suffering, testimony
48 Comments
RFA Ticker, 5/16/16
NIH cracked the $2 billion mark in RFAs, but there are still #MillionsMissing in essential research dollars for ME/CFS. Total RFAs Issued by NIH: 221 (October 2015 to date) Total Dollars Committed to RFAs: $2,029,040,000 (October 2015 to date) Total … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, priorities, researchers, RFA, RFA Ticker, speaking out, spending
1 Comment
#MillionsMissing
For as long as I have been an ME/CFS advocate, I have heard people say we should protest/take to the streets/be more like ACT UP. But for the most part, demonstrations have been small (even one woman) shows. That is … Continue reading
Posted in Advocacy
Tagged action, CDC, clinical trials, DHHS, drugs, FDA, funding, government, grants, living with, medical education, NIH, occupy, politics, priorities, recommendations, speaking out, spending, treatment
9 Comments
RFA Ticker, 5/9/16
We observe International ME/CFS Awareness Day this week, and there are still #MillionsMissing in essential research dollars. Total RFAs Issued by NIH: 210 (October 2015 to date) Total Dollars Committed to RFAs: $1,996,940,000 (October 2015 to date) Total RFAs for … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, priorities, researchers, RFA, RFA Ticker, speaking out, spending
3 Comments
Staying the Course to Where?
Dr. Francis Collins, Director of the National Institutes of Health, made a request of the ME/CFS community. During the March 8, 2016 NIH telebriefing, Dr. Collins said: So please take our commitment with great seriousness. Please also stay the course … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, biomarkers, case definition, CFSAC, DHHS, drugs, funding, government, grants, NIH, P2P, politics, priorities, recommendations, researchers, RFA, speaking out, spending, treatment
17 Comments
RFA Ticker, 5/2/16
The last week of April was not the lightest week for RFA’s, but it was pretty close. Three of those RFAs came from the Office or Research Infrastructure Programs in the Office of the Director. NIH has now issued over … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, priorities, researchers, RFA, RFA Ticker, speaking out, spending
1 Comment
RFA Ticker, 4/25/16
NIH issued more than $42 million in new RFAs last week. My question is whether RFAs will crack $2 billion before ME/CFS finally gets its own. Total RFAs Issued by NIH: 198 (October 2015 to date) Total Dollars Committed to … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, priorities, researchers, RFA, RFA Ticker, speaking out, spending
2 Comments
PACE-Gate
It is International ME/CFS Awareness Day, and what is most on my mind is the status of PACE-Gate: the controversy over the design, conduct and results of the PACE trial. PACE is the largest clinical trial in ME/CFS, and it … Continue reading →