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Wanda Jones made a difference for the CFS Community at the federal advisory committee for CFS (CFSAC). The NIH liason (FDO) to the committee Wanda was right there in the middle of things when XMRV came on the scene. Sometimes fiery, sometimes surprisingly funny, Wanda was the rock the CFSAC evolved around. She did not brook disorganization and inefficiency and got the committee organized better, pushed it and it’s agenda hard at the Department of Health and Human Services, got live videostreaming going, and then, all of a sudden she was gone. Wanda had been pushed up the ladder about a year earlier and could have left then and but she had stayed on but now she was really gone. I asked her a few questions about her stay at CFSAC.
WANDA JONES on her Stay at CFSAC
Why did you leave?
The responsibility for CFSAC management is assigned to the Office on Women’s Health (OWH) within HHS. I managed CFSAC when I was Director of OWH, and continued to oversee it when I became the Principal Deputy Assistant Secretary for Health, because I felt a responsibility to sustain the Committee’s momentum on this important public health topic until a permanent OWH Director was named. I’m pleased to announce that OWH now has a new director, Dr. Nancy Lee, who will now be managing the Committee. I know I leave it in good hands.
You were there for several years. How do you think the CFSAC committee is different after your tenure there?
CFSAC has much more visibility now. We have established an effective process to ensure recommendations are transmitted to the Secretary in a timely manner and that we get a response. And our Ex Officios (non-voting Federal members) are very active now. They’ve really stepped up efforts to integrate our recommendations into other Department endeavors, so our reach is much broader than it has been in the past. A great example of this is the State of the Knowledge Workshop at NIH earlier this year, which brought together 32 investigators from a wide variety of scientific disciplines to discuss ME/CFS research. And since we started webcasting the CFSAC meetings, many more people have been able to participate in the important work that this committee does.
3. Are there any misconceptions the patient community has about the Committee? Is there anything you’d like the patient community to know about the Committee that they don’t already?
HHS has more than 200 Federal Advisory Committees, and each of these advisory committees makes recommendations that may be difficult, if not impossible, to implement. No single committee has the Secretary’s undivided attention. But CFSAC has a good working relationship with a number of other agencies and it has been able to partner with them to find creative ways to reach common goals.
4. Will you be involved with CFS anymore?
I will stay as involved as I can, given my current time constraints. I am still very passionate about the topic, but I won’t be able to give it the day-to-day focus I was able to provide in the past.
5. What does your replacement bring to the table?
Dr. Lee is an excellent scientist and physician, and a self-identified data nerd. I have no doubt that she will bring to CFSAC the same high standards and energy that she has brought to every other endeavor she has tackled. CFSAC is very lucky to have her at the helm.
Dr. Nancy Lee comes highly recommended but she’s gotten off to rocky start. In what seems to be some really twisted logic, in the midst of the biggest budgetary lockdown the govt has faced in years, the meeting was moved from the federal DHHS building (rent-free) at the Holiday Inn (not rent free), because of security concerns, and then budgetary concerns knocked the popular live videostreaming of the meeting off the docket.
Only rarely has the CFSAC meeting been attended by more than 25 or 30 people at a time, and often it’s quite less, yet the NIH chose to rent a ballroom at the Holiday Inn for two days to have the meeting in – raising the Committees costs considerably. (Did security personnel object having to ferry patient advocates to the room?)
Then CFSAC nixed the live videostreaming, which according to Wanda Jones, had been a roaring success. Without knowing what happened it sure looks like the NIH traded what will surely be a mostly empty ballroom at hotel for a popular live videostreaming event.
On top of that there were problems figuring who was able to speak and who was not – with the CFSAC group contradicting itself at times. CFSAC has never been particularly good about getting the agenda of the meetings out but this time it was something else entirely with the agenda finally appearing less than a week before the meeting was due to occur.
It’s not looking very organized over there at CFSAC and Dr. Lee is off to a rocky start. Her main job is empowering the committee and giving it visibility at the DHHS. Wanda Jones, with her eye for organization and her evident passion for the subject, was our best liason yet. Hopefully Dr. Lee will bring equal passion and commitment to a very underserved CFS community.
CFSAC Meeting Agenda
Audio Call-in Information (https://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20111108_callininfo.html)
The Meeting of the Chronic Fatigue Advisory Committee will be available via AUDIO Lines. The following call-in information will provide access to the meeting via audio lines:
Please dial the participant dial-in number:
Participant Dial-In Number: Toll Free – (866) 395-4129
Please use the following passcodes for each day:
Tuesday, November 8: 24756185
Wednesday, November 9: 24759937
Please note, each caller can press *0 at any time during the call to contact the operator for support.
There will be an operator on the line to welcome you and each caller will be asked their name and email address (this is not a requirement). You will be placed into the conference.
During the lunch hour, callers may hold the line or choose to call back to access the conference.
The CFSAC meeting will begin from 9:00 am – 5:30 pm Tuesday, November 8 and 9:00 am – 4:30 pm on Wednesday, November 9.