A Different CFSAC

It’s that time again: meaning it is time for another CFS Advisory Committee meeting. Due to the make up day in March, the meetings have fallen very close together. Presumably this spring meeting puts the calendar back on track (but that’s a guess on my part). Key deadlines are upon us, and there are some interesting changes you should also be aware of.

Deadlines You Need to Know

  • The meeting is June 16-17, 2014.
  • If you want to attend in person, you must register by Thursday, June 12th. If you are not a US citizen, the deadline to register was June 5th.
  • If you want to give public testimony in person or over the phone, you must register by Monday, June 9th.
  • According to the Federal Register Notice, if you want to submit written public comments for the record, you must do so by Thursday, June 12th. Be sure to comply with the guidelines on length and file format from the Federal Register Notice.

Many Differences

A number of things will be different about this meeting compared to previous ones:

  • Length – This meeting will be from 12-5pm on June 16th and 9am-5pm on June 17th. This is a switch from the usual two full days for in-person meetings. The Office of Women’s Health was asked about the timing, and OWH stated that the half day on Monday was to avoid requiring everyone to travel on Father’s Day (although presumably some people will still need to do so).

  • Location – The meeting is in-person (hopefully this is the end of webinars), and it is being held on the first floor of the HHS building in the Great Hall. This has happened only one other time in the history of the Committee: October 2009, immediately after the publication of the XMRV paper in Science. OWH said that the change was made because the usual Room 800 was not available during the month of June.

  • New MembersAs I pointed out in March, there are five (and soon to be six) vacancies on CFSAC. Four terms expired on May 10, and Dr. Dimitrakoff resigned before the March meeting. In theory, at least four new members should be appointed for this meeting. I’ve heard reports that this will be done in time, but failing that, Dr. Nancy Lee will act as chairman of the Committee (in place of Dr. Marshall) and the remaining six members will serve. Dr. Lee has the option of extending terms beyond the scheduled expiration date, but we do not yet know if this has been done or if the new members will be sworn in.

  • Three Minutes for Public Comment – You might recall that we usually have five minutes for public comment. In December, the time was cut to three minutes because of the compression of the agenda due to the snow day. In March, the three minute limit was retained in order to maintain parity with the people who had their time cut in December. But now, the three minute limit appears to be permanent. I originally wondered if this was a mistake, but the OWH confirmed that Dr. Lee decided to keep the three minute limit. Why? I don’t know.

Agenda, On and Off

You can see the full agenda here. There are a few things to note:

What’s on the agenda?

  • A presentation (and recommendations?) from the Research and Clinician-Scientist Recruitment Working Group. I posted about their work to date in April. Group chair Dr. Dane Cook’s term expired in May, so I do not know if he will attend or has been replaced.

  • Another intriguing topic is “Future Directions” on day two. This is paired with a presentation on epilepsy as a model for collaborating post-IOM report, so I’m assuming that is the focus of the future direction question. This begs the questions of whether HHS will use an IOM report if they don’t like the answer, and the extent to which anybody will be willing to collaborate with anybody else given the controversies over the IOM contract.

  • Finally, day two will end with “Open forum” among people in attendance. This sounds like open mic, rather than the submit questions in advance process from the past, but I have no information about how this will actually work. I will be very pleasantly surprised if it really is open forum.

What’s off the agenda?

  • An obvious and glaring omission is any discussion of the P2P Workshop, given that controversy. I am hoping/assuming that NIH and AHRQ will address P2P in their agency reports on day one, but each agency only has 20 minutes and there does not appear to be time set aside for questions.

  • Another omission is the Education Working Group recommendations from the March meeting. Those recommendations have still not been posted to the CFSAC website. Have they been finalized? Submitted to the Secretary? Is there more work to do here?

  • And finally, there is nothing about charter renewal on the agenda. The CFSAC charter will expire in September. Is renewal a done deal? Is there room for improvement in the charter? We won’t know unless someone takes it upon him/herself to ask the question.

There’s not much time! So sign up for public comment and send it in. Here’s my post from last year about why getting your comments on the record is so important.


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