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Monthly Archives: May 2016
RFA Ticker, 5/30/16
NIH took two steps down the road that leads to more ME/CFS research funding last week, but it’s important to understand what those steps actually mean at this point in time. First, NIH issued a Request for Information: Soliciting Input … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, priorities, researchers, RFA, RFA Ticker, speaking out, spending
22 Comments
RFA Ticker, 5/23/16
NIH issued only two RFAs last week, but last week we learned much more about what is coming for ME/CFS. As I explained in my summary of the CFS Advisory Committee, Dr. Vicky Whittemore reported that she will be presenting … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, funding, government, grants, NIH, priorities, researchers, RFA, RFA Ticker, speaking out, spending
8 Comments
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
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 →