NIH Obstacles Thwart ME Research

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.

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5 Responses to NIH Obstacles Thwart ME Research

  1. Rivka says:


  2. Kathy D. says:

    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.

  3. Janelle says:

    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.

  4. Janelle says:

    Also, very well articulated, Jennie. Thank you for your work. 🙂

  5. Jim Mills says:


    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.

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