After I published my post on the NIH Obstacle Course (November 2018), readers’ reactions made clear that a shorter version of the article could be useful.
Today, STAT published that shorter article in the First Opinion section. You can read it here: The NIH is thwarting research on a poorly understood but serious condition.
Please read and share widely! Given the ongoing work of the Working Group advising the Council of the National Institute of Neurological Diseases and Stroke, I think the article in highly relevant in our field.
My thanks to STAT for giving this article a home, and to Julie Rehmeyer for pointing me in the right direction.
GREEEEEAT!!
Thanks very much for this and all of your advocacy work on our behalf.
Hope this year is a better one for you and wishing you a Happy New Year.
Kathy D.
I wonder if it’s possible to get a disparate impact study done on NIH policy. To study the impact on people disabled with poorly understood conditions, including people with more than one intersectional marginalization.
Also, very well articulated, Jennie. Thank you for your work. ?
Jennie,
Thank you for all of your efforts in your careful analysis of the reasons that NIH’s “normal approach” to encourage more proposals will not work for ME/CFS.
I just sent email letters to Francis Collins, MD; Walter Koroshetz, MD; and Vicky Whittemore, Ph.D. explaining my own concerns that since the “normal approach” is not working, other approaches need to be tried.
I sent each of them a copy of your November, 2018 “NIH Obstacle Course” post with the request that: “I hope you will read, reflect, and act on her comments.”
I hope they do.
I will also be contacting my Maryland Senators and Congressman regarding this issue.