The Return of CFSAC

Publicly, the CFS Advisory Committee has been MIA this year. There were some comings and goings, and general silence, but now there is finally movement to report.

UPDATE July 28, 2015: The Federal Register notice for the meeting has been published. Registration is attend in person closes August 13th. You must request public comment time by August 10th. Written public comment is due by August 13th. Details for all these deadlines is in the Federal Register notice.

We Meet Again

The big news is that CFSAC will hold a two day in-person meeting on August 18th and 19th. There is no agenda yet, and instructions for submitting testimony will presumably be included in the August 3rd Federal Register notice.

My suggestion is that you don’t wait for the Federal Register notice. The deadline for submitting public testimony will be probably be about three weeks from now. Start working on your comments, because that deadline will be upon us very quickly.

Roster Changes

I previously reported that Dr. Gary Kaplan‘s term expired on May 15, 2015. Without fanfare or announcement (or a public call for nominations), Dr. Kaplan’s term has been renewed for another two years, through 2017. Four members’ terms will expire next year.

You may recall the public call for nominations to the non-voting liaison positions. The Solve ME/CFS Initiative and IACFS/ME have been reappointed to two year terms. However, the charter specifies “there will be three non-voting liaison representative positions.” No explanation has been offered for why only two liaisons were appointed.

There have been interesting developments in the ex officio roster. First, Dr. Nancy Lee has officially been reappointed to the Designated Federal Officer position, to replace Dr. Ledia Martinez who resigned after about a month. Second, as I previously noted, Dr. Suchitra Iyer is the new ex officio from the Agency for Healthcare Research and Quality. She was the contract officer on the AHRQ systematic review for the P2P meeting.

Third, Dr. Deborah Willis-Fillinger has been replaced as ex officio for the Health Resources and Services Administration. Erin Fowler will now serve in that capacity. Fowler works in the newly created Bureau of Health Workforce, which focuses on encouraging and training health care workers for underserved populations.

Fourth, the new NIH ex officio is Dr. Vicky Whittemore from the National Institute of Neurological Diseases and Stroke. This is huge news. For the first time that I can remember, the NIH ex officio is from an Institute, rather than the Office of Research on Women’s Health. Furthermore, Dr. Whittemore has acted as the Program Official on ME/CFS grants to Dr. James Baraniuk, Dr. Mary Ann Fletcher and others. Whether this signals changes at NIH remains to be seen.

And You?

As I said, the agenda has not been posted yet. But presumably, there will be discussion about the IOM and P2P reports – perhaps even recommendations? This is hugely important, given HHS’s perfect silence about IOM and what they are going to do next.

Will SEID be adopted as the official name? With the IOM criteria replace Fukuda? What will CDC do with its website and Toolkit? Will there be NIH funding? Will anybody in the government be doing anything different?

So do you have something to say to CFSAC or to NIH or to CDC? Then start writing those comments and block off August 18th and 19th. This is our chance to speak publicly about the IOM, P2P, and the current state of inaction and silence. Get ready.

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7 Responses to The Return of CFSAC

  1. Cecelia Blair says:

    Dr. Vicky Whittemore’s background sounds useful for us! I like Dr. Gary Kaplan too. He seems able to cut through the fog and is also not overly concerned about any powers that be not liking this. Nancy Lee’s performance I certainly haven’t liked in the past, as before she seemed to sow confusion so that nothing useful got accomplished, which may have been the bureaucratic mission. Still many careerists from the ranks (Simon Wessely comes to mind) are such political animals that will shift course as the political trend shifts. Hopefully our star is rising, or at least they can’t count us out as before, so maybe the outcome won’t be as dismal as in the past. I hope so!

  2. Joe Landson says:

    Welcome back to the best comedy club I’ve ever played…

  3. Ixchelkali says:

    I appreciate you staying on top of this and keeping us informed, Jenny. Thanks.

  4. Sasha says:

    I wonder if this meeting should be the target of a coordinated patients’ campaign on a specific issue, such as NIH funding or a better NIH home than Women’s Health, as per Brian Vastag’s letter in the Washington Post?

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