CFSAC Nominations in Play

September 27, 2009

Posted by Cort Johnson

The CFSAC is the  federal advisory committee on chronic fatigue syndrome. It advises the Secretary of Health on the federal response to ME/CFS including research, treatment and disability. Among the agencies it interacts with are the Centers for Disease Control, the National Institutes of Health and the Social Security Administration.

FIve slots are open, one of which is the patient representative . You can provide letters of support for people you’d like to see nominated.

My Picks – There are a lot of very worthy people with impeccable credentials on the list – virtually everyone, from what I can tell, would be a real asset. It’s impossible to know who would be most effective but there are some people in particular that I would love to see on the panel. They include Dr. Donnica Moore, Dr. Judy Mikovits, Dr. Dan Peterson (and, of course, myself.)

I think Dr. Moore brings a presence and visibility given her media activities, that would be very helpful. Dr. Mikovits brings years of experience in the federal research system. Dr. Peterson brings years of experience treating patients and a fierce commitment to them and he has been a strong critic of the slow as mud federal approach to this disorder. As a patient I bring a great deal of frustration at the slow pace of research plus an active interest – demonstrated in the many blogs and paper’s I’ve written – in why the federal approach to this disease has been so halfhearted and disappointing.

Letters Of Support – The letters of support can be sent to the office of Wanda Jones either by regular mail (see bottom) or email to cfsac@hhs.gov .  If the letters of support are sent via email, put in the subject line “Letter of support  for CFSAC nominee  (eg. “Dr. Donnica Moore”) and at the bottom of the letter put in your name and address so they know it’s a real person and have something other than just an email address to refer to.

They should be sent in the  next two weeks.

CFIDS Association of America (information on their picks)

  • Bruce Allshouse
  • Christoph Bausch, PhD:
  • Dane Cook, PhD:
  • Michael Houghton, PhD:
  • Judy Mikovits, PhD:
  • Donnica Moore, MD:
  • Daniel L. Peterson, MD:

PANDORA

  • Dr. Peterson
  • Dr. Albert Robbins
  • Barbara Soliday
  • Dr. Martin Pall
  • Dr.Jacob Teitelbaum
  • Dr. Herbert Hyman
  • Steve Krafchik, Esquire
  • Caroline Fibrance, Esquire
  • Jill McLaughlin

IACFS/ME

  • Dr. Dan Peterson
  • Mary Ann Fletcher (Ph.D)

Miami CFIDS Support Group

  • Cort Johnson
  • Barbara Soliday

(If other nominations are out there please send them in and I’ll post them).

5 comments

{ 5 comments… read them below or add one }

Tom Kindlon September 27, 2009 at 5:51 pm

Best of luck to everyone who applies.

It should be remembered that all 11 on the roster have to go by April 1, 2011 so that if people miss out this time they won’t necessarily have a very long wait before other opportunities arise.

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Tom Kindlon September 27, 2009 at 5:53 pm

P.S. Hopefully if you get on Cort, you’ll remember that CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) is not spelt CFID’s :-) Have you that spelling in your spell-checker?

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Tom Kindlon September 27, 2009 at 6:08 pm

According to this there are *5* slots:
http://edocket.access.gpo.gov/2009/pdf/E9-20568.pdf
“The appointments of five Committee members are scheduled to end on January 3, 2010. Nominations of qualified candidates are being sought to fill these scheduled vacancies.”

This is what looks like should be the case as 5 people on the list “expire” on 01/03/2010
http://www.hhs.gov/advcomcfs/roster/index.html

However maybe people know something I don’t.

Also who are the 4 in the current roster who satisfy the criteria for non-biomedical research scientists? Only 3 would obviously satisfy the criteria. It’s just relevant to see which slots are opening up. My guess is that both Kristine Healy and Rebecca Artman are in the group of 4??

http://www.hhs.gov/advcomcfs/charter/index.html
The Committee shall consist of 11 members, including the Chair, appointed by the Secretary or the Secretary’s designee. Of the 11 members, 7 shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to chronic fatigue syndrome; 4 shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS. All members of this Committee are classified as special Government employees (SGEs).

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cort September 27, 2009 at 6:26 pm

Thanks again Tom. Tried to dredge that number from the recesses of memory – should have checked if four was the correct number. No CFIDs is not in my spell checker although you’ve mentioned it several times. (I don’t know how to work my spell checker – but I’ll try once again to remember that its CFIDS not CFID’s. :) I fixed it in the post)

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Michelle September 28, 2009 at 11:28 pm

I would think Annette Whittemore would be a great person to nominate. Though not sure if you she would be interested.

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