CFSAC Around the Corner

The next meeting of the CFS Advisory Committee will be held Thursday, January 12th, and Friday, January 13th. This is an in-person meeting, and will also be webcast. Note that the Thursday meeting runs from 12 pm to 5pm, while the Friday meeting is a full day.

This will be the first in-person CFSAC meeting since August 2015 (!), and the first meeting organized by the new Designated Federal Officer, Commander Gustavo Seinos. The meeting will NOT be held at the Health & Human Services building. Instead, the meeting will be located at the The Henry J. Kaiser Family Foundation’s Barbara Jordan Conference Center – 1330 G ST, NW – Washington, DC 20005. According to the Federal Register Notice for the meeting, you will still have to register in order to attend in person (registration instructions have not been posted yet). If you are planning to attend in person, remember that the inauguration is only one week later (January 20th), so DC will be more crowded than usual.

Thirty minutes will be allocated for public comment on each day of the meeting. The Federal Register notice has details on providing oral and written comments, but the most important thing to note is that there are deadlines:

  • To sign up for oral comment (in person or by phone), you must request a slot by sending an email to by January 5, 2017. The email should contain the speaker’s name and the telephone number at which the speaker can be reached. Oral comment is limited to three minutes, which means no more than twenty people will have the opportunity to speak.
  • To have written comment provided to CFSAC members, you must submit it prior to the meeting. You are limited to five single-space pages. See the Federal Register Notice for more details.

There is no agenda for the meeting yet, but there should be updates from the working groups formed after the May 2016 webinar meeting. The Stakeholder Engagement Working Group (of which I am a member) will present an interim report on its discussions of how to engage community stakeholders in research efforts. A second working group was formed to examine the feasibility of HHS and the Department of Education to collaborate in providing resources for parents of young people with ME/CFS and school nurses, but I have no information on the status of that group. Dr. Jose Montoya agreed to lead a working group to develop a detailed supporting case for a substantial increase in research investment, but I have no information about the status of that group either.

If you need fodder for your public comment, you could take a look at my summary of the May 2016 webinar meeting. A very important issue is the CDC’s refusal to remove PACE-based treatment recommendations from its materials, despite the reduction of PACE to a steaming hot mess after reanalysis of the data using the original protocol. You could also look at my summary of NIH’s research funding in fiscal year 2016 and/or the P2P Federal Partners Meeting report. Building on Terri Wilder’s excellent public comment from the May 2016 meeting, you could talk about #MillionsMissing. The NIH Clinical Care Study has recently revised its protocol and appears to be recruiting, and there is also the Shorter Fiasco to discuss.

Finally, there are some changes to CFSAC that you should review. Due to term limits, CFSAC is down to only seven out of thirteen voting members. I do not know if new members will be appointed prior to this meeting. New ex officios from the Department of Defense and the Veterans Administration have also not yet been named. Finally, the new charter added a new purpose on which CFSAC can make recommendations: “strategies to insure that input from ME/CFS patients and caregivers is incorporated into HHS policy and research.” You can read my summary of all the charter changes in this post.

Despite HHS’s poor record on adopting CFSAC recommendations, and despite how frustrating the meetings themselves can be, CFSAC is still our major public venue to learn about HHS activities and to provide input to HHS on the record. As I’ve said before: if someone offers us a microphone, we have an obligation to speak. No one will speak for us if we refuse to speak for ourselves.

My thanks to Denise Lopez-Majano, whose assistance made it possible for me to write this post.

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8 Responses to CFSAC Around the Corner

  1. Thanks, Jennie and Denise.

    That is an impressive amount of information in one post.

    I love your statement: if someone offers us a microphone, we have an obligation to speak. No one will speak for us if we refuse to speak for ourselves.

    Sadly, it is necessary – the logical procedure, that the medical authorities identify and solve public health problems, has not happened.

    Interesting what an odyssey it is for someone like us who doesn’t live close to DC to get the the place where she could speak for three minutes – it is an endurance test. Planning ahead of time – signing up, getting credentials, finding the place…

    Then sitting until one’s time is up, knowing how disorganized these things can be (I schedule my naps so that I am coherent when I need to be – and then people change things by a half hour, and I’ve lost the ability to adjust).

    Any possibility one could speak by Skype?

    • Jennie Spotila says:

      Remote comment is only available by phone at the moment. But offering the chance to appear on a Skype video feed is a great idea. I think you should make that suggestion to Commander Seinos, so he can investigate the feasibility of that.

    • Denise says:

      Alicia – thank you. I am glad to help – though I did very little.

  2. Nita Thatcher says:

    Do you know if David Tuller has been asked to send a synopses of his research on the PACE debacle to the CFSAC committee?

  3. bobbi ausubel says:

    Hello, I could go to the meeting and speak because I will be visiting in DC at that time. However I wonder if someone else wants that time. I already spoke previously via phone probably at the last meeting. I don’t want to take the space of someone who really wants to speak directly to this committee.

    My daughter Rivka has been ill for 27 awful, horrible, years.

    Meanwhile, I am putting together a paper with Emily from SolveCFS documenting ME and other ‘mostly’ women’s illnesses, to show discrimination against diagnosing, research and funding these diseases by government agencies. (Includes MS and other Autoimmune illnesses, heart attacks, DES .) One quote is great from a cardiologist ” We were trained in medical school to be on the lookout for hysterical women who come into ER.” so if the doctor does not know about the symptoms, the woman is hysterical! If you know to whom to send this paper when we are finished, in a week or so, let me know.


  4. bobbi ausubel says:

    see previous comments

  5. Sharon says:

    I am homebound as well. Have to laugh, when I do go out it is:
    Do I have what I need today…. collapsable wheel chair, w/c cushion (for on car seat as well), neck pillow, long back obus form, cane, walker, blanket, sunglasses, eye mask, ear plugs, water, salty snacks, kleenex and medication. Each item as important as the other. A zero gravity chair is on the list if I can’t sit up for long. Can you bring that to speaking engagements?

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