The IOM controversy and the government shut down have been distracting, but CFS Advisory Committee deadlines are fast approaching. The CFSAC meeting is just three weeks away – November 12-13th – which means that public comment will be due soon, although no deadline has been announced. CFSAC announced via its listserv today that the meeting is postponed to December 10-11th. An agenda and details about public comment will be posted soon. BUT nominations for new CFSAC members are due October 28th, so you have a few more days to submit the required information.
Who Is Leaving?
Six of the eleven voting positions must be filled in 2014. There is one current vacancy, left by Dr. Ann Vincent’s resignation earlier this year. Updated 10/23/13: CFSAC confirmed via its listserv today that Dr. Gary Kaplan has been appointed to fill Dr. Vincent’s seat. Five members will reach the end of their terms in 2014: Dr. Gailen Marshall, Dr. Dane Cook, Dr. Susan Levine, Steve Krafchick, and Eileen Holderman. New nominations should include both researchers and experts in health care delivery, private health care services, and voluntary organizations.
How To Nominate
All the instructions for submitting nominations are contained in the Federal Register Notice. The package must include a letter stating the nominee’s qualifications and willingness to serve, the nominator’s contact information, and the nominee’s CV or resume. Submissions can be sent by email or regular mail, and are due by 5pm on October 28th.
Nominees
I will post names of nominees as I learn about them, and receive permission to post. You can send emails in support of candidates, and I encourage people to do this after a nomination has been made. A majority of the Committee – six of eleven seats – are turning over next year, and we need to do whatever we can to ensure that the new members are familiar with ME/CFS and the issues we’re facing.
The following nominations have been made as of October 25, 2013:
- Mary Dimmock, nominated by Jennie Spotila
- Donna Pearson, nominated by Massachusetts CFIDS/ME & FM Association
- Joe Landson, nominated by Denise Lopez-Majano
- Dr. Derek Enlander, nominated by Gabby Klein
- Dr. Leonard Jason, nominated by Dr. Faith Newton
- Dr. Lily Chu, nominated by herself (with others writing in support)
Gabby mentioned this in the comments, but it bears repeating. You can support any candidate who has been nominated by sending an email to cfsac@hhs.gov. The email doesn’t need to be very long – even just a few sentences in support of a nominee will be read and saved.
*Donna Pearson alerted me to this announcement by Dr. Gary Kaplan that he has been appointed to the CFSAC. I’ve asked Dr. Nancy Lee for confirmation, as no announcement has been made on the CFSAC website or listserv. Update: The CFSAC office responded to my inquiry saying that the announcement was posted “prematurely” and that the public would be informed once the appointment process was complete. CFSAC has confirmed 10/23/13 that Dr. Kaplan has been appointed. Interview with Dr. Kaplan coming as soon as I can write it up. Profile posted on 10/25/13.
Thank you, Jennie, for this latest update re CFSAC. As I am unfamiliar with some of the names–is it to the benefit of ME/CFS sufferers to have Dr. Gary Kaplan appointed to the committee to represent and help us ?
It’s hard to say if Kaplan will benefit us. He runs an integrative medicine practice in McClean, VA. Without talking to him, I can’t say what his views of ME/CFS are.
Thanks, Jennie–I had just viewed Kaplan’s video on Central Pain Sensitization Syndrome, but didn’t get a sense of info on ME/CFS there.@Jennie Spotila
Here is his page on CFS: http://www.kaplanclinic.com/chronic-pain-and-illness-conditions-treated/chronic-fatigue-syndrome/
Great, tks, Jennie–actually just found that and had a peek at it too; looks like the integrative methods used–as there is no cure–and no mention of recent research. Good noted–did NOT see reference to GET and CBT on that site.@Jennie Spotila
While we are wasting time running around nominating peope to the CFSAC, we should be boycotting this meeting. I mean if no one shows up and testifies for the Umpteenth time on stuff everyone knows about anyway, it sends a clear message to the Feds, we’re not playing by your rules anymore with your dog and phony show. It coomunicates a message of protest.
Oh, by the way while we are running around trying to come up with nominations, HHS decided to make appointments! They appointed illustrious ME/CFS expert. Dr. Gary Kaplan http://www.kaplanclinic.com/dr-kaplan/chronic-fatigue-syndrome/
We offer a multitude of effective treatment options, including:
Acupuncture
Herbal Remedies and Nutritional Supplements
Nutritional Counseling
Sleep Evaluation & Management
Vitamin & Magnesium IV Supplementation
Prescription Medications
Massage Therapy
Stress Management, including Meditation Training
EMDR and Guided Imagery Meditation
You can see by HHS mindset where this is going and how well they’ve listen over the years. Something about fool me Once, shame on you. Fool me Twice, shame on me. The community seems to parodying Bush’s analogy.
Actually, I think HHS would love nothing more than for us to nominate no one and boycott the meeting. Then they could do whatever they pleased with impunity, and not just about the IOM contract.
@Jennie Spotila
A definition of insanity is doing the same CFSAC meeting over and over again, year after year expecting a different result. I hear you Jennie but they will anyway. They own the process. They forget the fact the HSS is here to serve us not the other way around. Haven’t they done what they please with impunity. The Ampligen meeting another example?
Certainly the modalities listed above as quoted in Dr. Gary Kaplan’s website are aimed at trying to ‘manage’ living daily with this horrid biological disease. We use these modalities; yet do NOT feel any better.
Science needs to get to the crux of the disease for effective treatment such that we can function in the world again like we very much used to!
The following nominations have been made as of October 23, 2013:
Mary Dimmock, nominated by Jennie Spotila
Donna Pearson, nominated by Massachusetts CFIDS/ME & FM Association
Joe Landson, nominated by Denise Lopez-Majano
Dr. Derek Enlander, nominated by Gabby Klein
If you would like to see these nominees serving on CFSAC, you can send in your letter of support by e-mailing cfsac@hhs.gov
Dr Lily Chu gave the most, and most important, input into my paper, “Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”. I have now had contact with her on and off for 3.5 years and have been impressed.
I agree, Tom. Lily is a very impressive candidate!
As your blog is read world-wide, Jennie, for clarification purposes–must one be living in the US to send in an e-letter in support of candidates? Tks!!
There’s no restriction that I’m aware of, Ess. Thanks!
Although I have thought in the past that we should boycott the meeting, this is one where I believe a strong protest in every statement submitted should be made, against the HHS pushing forward the IOM contract without any regard to the Committee’s recommendation to adopt the CCC. If they misunderstood the recommendation (an “out” for them), they can cancel the contract easily.
I feel we need a very strong advocate/professional in the position of head of the Committee; I don’t think Gailen Marshall was ever that person.
I like Ms. Dimmock, who is a well person, with a PWME family member. I also like Dr. Jason, who has been an outspoken member in the past; can he be appointed again? I’d like to see him head the committee. I feel it is a heavy burden for a PWME to be present both physically and mentally on the committee.
Now that PANDORA has asked Dr. Wanda Jones to intervene on patients’ behalf, it will be interesting to see what transpires regarding the IOM contract. Did Dr. Jason sign the Experts Letter to Sebilius? I think he did, so he would be very beneficial as head of the CFSAC.
I have been of a mind to boycott the CFSAC ever since I attended in 2010 and saw how the patients were “used” to eat up the time, and very little got actually accomplished. I now think we must protest in the strongest, sanest possible way against the IOM contract, and our statements could do that. It could be fodder for a Congressional Hearing, which I believe is our next step if the contract is not cancelled.
I agree with Jennie, be present at each and every meeting and keeping pressure on this committee, is the best course of action. While it is completely frustrating and disheartening when the government doesn’t listen or move as quickly as we would like them to, I think we have to continue to push every angle. We need to show up wherever we can have input and I do actually think we are making small bits of progress with them.
Remember also, as these new people are rotated on to the committee, they need to be educated from us patients about what CFS is really like. If we aren’t there, they could easily think that patients don’t care enough to attend. This isn’t fair for us, but we have to continue to educate/persuade while we also use other tactics to get action.
I agree that Dr. Jason would make an outstanding chair, I would be completely thrilled even if he was just on the committee. We need people who are really assertive and logical to be on board – the way Steve Krafchick is now. Dr. Jason and Dr. Klimas were really outstanding, these were people that could get the ball rolling.