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Tag Archives: speaking out
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 accountability, accuracy, action, categories, fatigue, funding, government, grant review, grants, NIH, portfolio, researchers, speaking out, spending, transparency
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 abuse deterrence, action, drugs, engagement, FDA, government, opioid, pain, participation, patients, represent, representative, speaking out, substance abuse, suffering, treatment
13 Comments
NIH Time Warp
Let’s take a quiz. I have a letter that was sent on behalf of Dr. Francis Collins, Director of NIH, to a person with ME, and I want you to guess when that letter was sent. Here’s an excerpt: First, … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, blame, CFSAC, DHHS, funding, government, grants, NIH, politics, priorities, recommendations, speaking out, spending, transparency, treatment, XMRV
13 Comments
Talk To FDA About Chronic Pain
The FDA wants to hear from people with chronic pain, and is hosting a meeting on July 9, 2018 to collect public input. I have chronic pain, and I know that many of you do as well. This meeting is … Continue reading
Posted in Advocacy
Tagged action, coping, drugs, FDA, government, living with, occupy, pain, pain management, patient, patients, PFDD, speaking out, suffering, testimony, treatment
5 Comments
The NIH Pilot Program: Wait and See
MEAction has collected thousands of signatures on a letter to Dr. Francis Collins, asking for a meeting with him and a plan of action to attack the ME public health crisis. That request is all the more urgent because NIH … Continue reading
Posted in Advocacy, Research
Tagged accountability, action, biomarkers, blame, case definition, DHHS, funding, government, grants, IOM, Millions Missing, NIH, occupy, politics, priorities, recommendations, researchers, RFA, speaking out, spending, treatment
50 Comments
All The Time and None At All
Dr. Francis Collins, in answering a question about ME research on April 20th, said that NIH recognizes and empathizes with our suffering and our “frustration that so little is known.” Then he dropped some knowledge. Dr. Collins said, “Research, done … Continue reading
Posted in Advocacy, Commentary, Research
Tagged accountability, action, anger, biomarkers, blame, funding, government, grants, living with, Millions Missing, NIH, noncompliant, occupy, politics, priorities, researchers, RFA, speaking out, spending, suffering, transparency
58 Comments
Return on Investment: David Tuller
When journalist David Tuller asked for crowdfunding in 2017 to support his research and writing on ME for a year, he had already demonstrated his commitment to a rigorous examination of the many problems and issues associated with the PACE … Continue reading
Posted in Advocacy, Commentary
Tagged accountability, action, CBT, CDC, exercise, funding, GET, occupy, PACE, politics, post-exertional malaise, psychosocial, speaking out, treatment
16 Comments
Public Comment on Engaging People with ME
I delivered these comments via telephone today at the CFS Advisory Committee meeting: My name is Jennifer Spotila. I will soon begin my 25th year of living with ME. People with ME know this disease. We have valuable insights and … Continue reading →