Just In: New CFSAC Members

New CFSAC members have been announced! Four members have been appointed, along with the announcement of the new chair.

Two members are not new to us, or to CFSAC. Dr. Sue Levine and Dr. Dane Cook have both been given new three year terms. Neither of them was nominated in response to the Federal Register Notice last year, so that means they were hand picked by HHS to continue (this is legal). New to the Committee but well known in the ME/CFS community, Dr. Jose Montoya nominated himself, and has been appointed for a four year term.

Dr. Alisa Koch is a rheumatologist at Eli Lilly, and was nominated by Denise Lopez-Majano. Dr. Koch knows the Lopez-Majano family well, and is familiar with Alexander and Matthew Lopez-Majano’s story. Dr. Koch is somewhat familiar with the IACFS/ME Primer, but has not treated ME/CFS patients. The addition of a rheumatologist to the Committee is interesting, given the emerging evidence that ME/CFS may be an autoimmune or autoinflammatory disease.

Donna Pearson was nominated by the Massachussetts CFIDS/ME & FM Association. I’ve worked with Donna on advocacy projects for the last several years. Donna was a business executive before falling ill with ME/CFS. In my personal opinion, she is smart, organized, and clear-thinking. Donna is very focused on measuring progress and results, and has demonstrated an ability to find consensus among disparate views. The CFSAC roster page makes it look like she was appointed for one day, but I suspect she was given a four year term.

Not on the roster page, but now known in advocacy circles, Dr. Faith Newton will replace Steve Krafchick in July. Dr. Newton is an expert in education, and gave a presentation to CFSAC on providing resources and information to schools and parents. She was nominated by Dr. Gailen Marshall, and appointed for a four year term. Her son has ME/CFS.

The new Chairman of the CFSAC will be Dr. Levine, but word is she will be unable to attend the June meeting so Dr. Lee will act as Chair in her place.

This is an interesting group of new appointees. All but one of the new members are ME/CFS experts, either as clinician, research, patient or parent. This is very very good news. The terms are now staggered such that no more than four terms will expire in any given year. Only two will expire in 2015. The reappointment of Drs. Levine and Cook also gives some continuity to Committee business, especially as they are both chairs of Working Groups. It’s unfortunate that Dr. Levine cannot chair the meeting this month, because I’m looking forward to seeing her leadership style.


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11 Responses to Just In: New CFSAC Members

  1. Sasha says:

    Very nice to have some good news about CFSAC for a change!

    Thanks, Jennie. Looking forward to seeing the new crew in action.

  2. Ess says:

    Bless your socks, Dr. Jose Montoya!!! Bless your socks!!! Thank you!!!

    • Jennie Spotila says:

      Not an easy thing for anyone to take on, so I appreciate everyone’s willingness to make the sacrifice! This is a good crew.

  3. Ren says:

    Thumbs-up (and fingers crossed) : )

  4. John says:

    It’s such a relief when knowledgeable and competent people are chosen for things like this instead of well intentioned ‘yes men’ (or women). Well done to whoever chose this round of members.

  5. Janelle says:

    that sounds really promising, and yes, I echo the sentiment to say thanks to everyone willing to do this.

  6. kathy d. says:

    Whew! I breathe a sigh of relief about these nominees and allow myself a bit of a cheer (not too much, or I’m afraid I’ll jinx this stroke of good fortune.)

    I wonder if these appointments reflect the activity and loud voices by the ME/CFS patient, family, advocacy and medical community.

  7. d sherman says:

    will be interesting, but not holding my breath. don’t think the gov’t actually lets ’em do anything, of value ?

  8. TY seems inadequate.

  9. Kristina Henson says:

    I like this new group but I’m very sorry to hear that Steve K is leaving. He has been invaluable and we need someone to keep pushing the envelope like he and Klimas use to do.

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