Comments to the Chronic Fatigue Syndrome Advisory Committee
Public Testimony: Christine Williams
November 8, 2011
Good morning. Thank you for the opportunity to provide public testimony today. My name is Christine Williams and I was privileged to have served as an Ex-Officio to the CFSAC for the Agency for Healthcare Research and Quality until my retirement from the federal government in June of this year, after 30 years of service. I spent my career in health policy and health services research – about half of the time on Capitol Hill as the senior health policy staff to the Senate Majority Leader, George J. Mitchell (D-ME), and the balance at the Agency for Healthcare Research and Quality (AHRQ).
In August of 2008 I had a sudden onset of flu-like symptoms that never went away. I spent 7 frustrating months having doctors telling me there was nothing wrong with me – or that I wasnʼt “tired enough” to have CFS/ME. Through my own persistent on-line searching I found a practicing physician, with expertise in CFS/ME, who determined that I had 7 of the 8 symptoms established by the CDC.
My illness significantly affected my personal and professional lives. I was no longer able to travel for business, needed to work at home on a regular basis, and too often did not have the energy to attend meetings to develop partnerships for the Agency, which was my primary job. Because I was determined to complete the remaining 2 1/2 years of federal service so I could retire, I spent most of my limited energy working. I had to decline most after work activities with my husband or friends. I spent evenings and weekends on the couch trying to rest so I would have the energy to go back to work.
And so, I was very relieved when I was able to retire in June.
I spent my career in government because I believe it can be a force for good and can make an important difference in peopleʼs lives. I have witnessed that positive impact both on Capitol Hill and in the Executive Branch. The Department of Health and Human Services (HHS) has the opportunity and the ability to make an enormous difference in the lives of people with CFS/ME, but that opportunity has not been fully realized. I would like to make a few suggestions about how the Department might move toward
maximizing that opportunity.
1) Leadership: The Department must provide public and active leadership to move the debate forward. The Secretary, Assistant Secretary for Health, Drs. Collins, Jones and Lee have all exhibited their commitment to this issue, but the commitment needs to extend to all levels in the Department and Agencies. And the leadership must be backed up with action.
2) Research: The Department, through NIH, AHRQ and other research agencies and divisions needs to be a leader in CFS/ME research, making it a priority, building on new studies and partnering with academic institutions and others in the field. “Reverse translational research” from clinical experience must be part of this effort.
3) International Consensus Criteria: HHS needs to be part of the dialog around the recently developed International Consensus Criteria, which demonstrates progress toward sharpening the case definition for CFS/ME. A more refined case definition could be the basis of improvements in focused research, patient registries, etc. The existing “babble” and broadness of case definitions is a barrier to meaningful research, and other critical efforts to find answers to this complex illness
4) Convener: HHS can convene key stakeholders. The 2011 State of the Knowledge Conference at NIH was an important start – some of the researchers at the table had never connected before. HHS can create and facilitate an ongoing “Learning Network” with these researchers and clinicians to help them “connect the dots” across disciplines.
5) Coordination across HHS: The Department must beef up its efforts to coordinate activities and initiatives across the agencies, through this committee or another group. Agencies should not duplicate efforts,need to know what others are doing, partner to maximize resources and initiatives, and must be a source of current scientific information on its websites.
Finally, donʼt let difficult fiscal times and bureaucratic red tape be a barrier to progress. There are actions this Department can take now. Move forward on the CFS/ME name change, and other existing recommendations from the CFSAC, which have been pending for some time.
Christine Williams, M.Ed.
When the AIDS epidemic hit in the ʻ80s HHS rose to the challenge to find treatments for people who were dying. Patients with CFS/ME have lives that have died. They are in beds and on couches watching the world pass them by. This Department needs to be a real leader in the search for effective treatments so that people can recover.
I know this great “Department of the People” can rise to the challenge.
Thank you.
Christine Williams will serve as a special advisor to the Department of Health and Human Services on CFS, working with the CFSAC leadership and other department officials to advance policy and research.
RSS
Twitter
Facebook
God Bless U ! Go for it…
thank you for ‘speaking out’ reg these horrible-life stealing diseases
Blessing’s & Gods Grace
marie
Well, this is an important development. Good for Christine Williams — who should have standing and clout, as a longtime health care policy maker and researcher — and sufferer of CFS, that this presentation was made.
And even better that there were concrete proposals presented to the CFSAC.
As a sister sufferer of this disease, one whom the speaker described above as mostly lying on couches, with a very limited life, I appreciate the effort and the thought that went into this presentation — and the energy it must have taken to give it.
I sincerely hope that something comes of the CFSAC session, that we’re heard and that steps are immediately taken. I know that with the government that things take a long time to happen, but as the speaker said, our lives are being drained away.
It would be good if this moved along speedily, funding, programs, research, treatment.
I’d like to have some of my life back, and so would everyone else who has this disease.
Thank you. Please do what you can, but without making yourself worse!!
I got a bit better, tried to work again, and now am bedbound continually.
Yes, our lives have died, but our bodies and awareness remain – an ongoing torture.
Thank you again
Thank you for your voice and the energy you don’t have.
i wish some one would tell me what kind of a doctor to go to??
I see an Infectious disease doctor. See if there is an advocacy group in your area and call them and see if they have any recommendations. There are nationally known specialists in a lot of areas, Boston, Miami, NYC, Nev. Ca…I’m sure I’m missing some…call some of the national figures and ask if they know any one in your area. Good luck.
THANK YOU CHRISTINE FOR GIVING YOUR VOICE TO CFS/ME.
MAYBE WITH THE HELP OF SOMEONE “WHO SPEAKS THEIR LANGUAGE ” THE TALK CAN BE MOVED INTO ACTION.
I HAVE BEEN WAITING 25 YEARS FOR SOMEONE TO PROVIDE THE ANSWERS TO THIS ALL ENCOMPASSING ILLNESS.
Thank goodness for wonderful people like you, Christine who are prepared to stand up and be counted. Really, really appreciate you preparing to speak to the committee.
Thank-you for all your wisdom, hard work but sorry you have to suffer to get the point accross. One thing for sure is the Government and all parties doing research need to have a computer bank where all information is recorded. Like you said so things are not duplicated, maybe more research would get done this way. And yes people look at you and think wow that person looks ok, well walk in my shoes and find out. Yes our lives have changed and not for the better.
Thank-you again.
I applaud you for delivering a succinct and well-focused view of the personal and professional impacts of CFS/ME. Your suggestions, if followed, would make a difference. I am pleased to see you are a special advisor to the Department of HHS on CFS, working with the CFSAC leadership.
Thank you in advance for the contributions you will make on our behalf.
Thx for all u alrdy do. I applied for disability since 2006 now thry are sendiznf me to a doctor of fheir cjoice for tjhe 3rd time. I cannot bear another denial. Im broke need medicAl treatmsnt medicatioms a flezible job for living. Wish disability would be of help but all they do is deny deny and again deny! Please help wirh this if u can. Thanks!!!