Copied from the 
Federal Register: October 5, 2011 (Volume 76, Number 193)
DEPARTMENT OF HEALTH AND HUMAN SERVICES Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Health, Office on Women’s Health.
ACTION: Notice.
SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.
DATES: The meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011. The meeting will be held from 9 a.m. to 5 p.m. on November 8, 2011, and 9 a.m. to 4:30 p.m. on November 9, 2011.
ADDRESSES: Holiday Inn Capitol; Columbia Room; 550 C Street, SW., Washington, DC 20024; Hotel (202-479-4000).
FOR FURTHER INFORMATION CONTACT: Nancy C. Lee, MD; Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov.
SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002. The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including
- The current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas;
- impact and implications of current and proposed diagnosis and treatment methods for CFS;
- development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and
- partnering to improve the quality of life of CFS patients.
The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site, http://www.hhs.gov/advcomcfs, when it is finalized. The meeting will be recorded and archived for on-demand viewing through the CFSAC Web site. It will be available by audio on both days and the call-in numbers will be posted on the CFSAC Web site.
Public attendance at the meeting is open. Those attending the meeting will need to sign-in prior to entering the meeting room. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.
Members of the public will have the opportunity to provide oral testimony on both days of the meeting; pre-registration for oral testimony is required. Individuals who wish to address the Committee during the public comment session must pre-register by Wednesday, October 26, 2011, via e-mail to cfsac@hhs.gov. Time slots for public comment will be available on a first-come, first-served basis and will be limited to five minutes per speaker; no exceptions will be made. Priority will be given to individuals who have not presented public comment at previous CFSAC meetings. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov, prior to the close of business on Wednesday, October 26, 2011. If you wish to remain anonymous, please notify the CFSAC support team staff upon submission of your materials to cfsac@hhs.gov.
If you do not submit your written testimony by the close of business Wednesday, October 26, 2011, you may bring a copy to the meeting and present it to a CFSAC support team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.
Individuals who do not provide public comment at the meeting, but who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Designated Federal Officer at cfsac@hhs.gov prior to close of business on Wednesday, October 26, 2011. Submitted documents should be limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team staff upon submitting your materials to cfsac@hhs.gov.
All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC Web site; this material will be made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other personal identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.
Dated: September 30, 2011.
Nancy C. Lee, Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee
_____________________
POSTED OCTOBER 18, 2011 (http://www.hhs.gov/advcomcfs/notices/n101811.html)
CFSAC November 2011 Meeting Changes
We have heard concerns about changes we have made in the venue and the format of the November 2011 Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. Below we provide additional details about the upcoming meeting and our reasons for the changes.
We are working diligently to address major shifts in budgetary and staffing restrictions and remain committed to protecting the personal safety and well-being of the public attending the meeting. To this end, the November CFSAC meeting will be held in the Columbia Room at the Holiday Inn, located at 550 C. St. SW, Washington, D.C. 20024. This change was made because Room 800 of the HHS Humphrey Building, where previous CFSAC meetings have been held, cannot accommodate more than 50 persons, and HHS staff are required to escort all persons attending the meeting due to the Humphrey Building’s security measures. The Columbia Room at the Holiday Inn holds a maximum of 300 people and provides an opportunity for the public attendees to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel lobby and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia Room to accommodate attendees who need a place to rest. As at past CFSAC meetings, HHS will not provide any medical services.
There will be a live audio link to the two day meeting, which will allow listeners to hear the entire meeting in real time. Due to budgetary constraints, we are unable to provide a live video cast of the meeting. We will provide a video recording of the meeting on the CFSAC webpage, http://www.hhs.gov/advcomcfs, which will be posted within one week of the meeting. This recording will be compliant with Section 508 of the Rehabilitation Act and will include captions.
Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.
Thank you for your continued commitment to, and participation in, the important work of the CFSAC.
CFSAC Support Team
___________________________
POSTED NOVEMBER 3, 2011
Meeting agenda: http://1.usa.gov/w3hTAI
RSS
Twitter
Facebook
On October 14, I received the following clarifications from Mr Emmett Nixon, (HHS/OAHS) CFSAC Support Team, in response to queries I had raised with Dr Nancy Lee:
Mr Nixon’s response (October 14, 2011):
“We have heard concerns about changes we have made in the venue and the format of the upcoming 2011 November Chronic Fatigue Syndrome Advisory Committee meeting. Below we provide additional details about the meeting.
“We are working diligently to address major shifts in budget restrictions and protecting the personal safety of the public attending the meeting. We have moved the Fall CFSAC meeting to the Holiday Inn 550 C. St. SW, Columbia Room, Washington, D.C. 20024. This change was made because the HHS Humphrey Building Room 800 cannot accommodate more than 50 persons, and we are required to escort all persons attending the meeting due to security measures in place. The Columbia room at the Holiday inn holds a maximum of 300 people and provides an opportunity for the public to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel cafeteria and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia room to accommodate those needing a place to rest. HHS will not provide any medical services.
“There will be a live audio link to the two day meeting, which allows listeners to hear the entire meeting in real time. Due to budgetary considerations, we are unable to provide a live-video cast as previously arranged. We will provide a video recording of the meeting on the CFSAC webpage http://www.hhs.gov/advcomcfs/. This recording will provide a higher quality video at substantially lower cost.
“Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.
“The CFSAC Support Team”
On October 17, I wrote to Mr Nixon, CC Dr Lee and Dr Chris Snell, Chair, CFSAC Committee, requesting that the decision not to provide live video streaming be reviewed, citing the issue of accessability to a public meeting by a patient group with disabilities, sensory processing difficulties and cognitive impairment and that a precedent had been set in May 2009, when video streaming was introduced for these meetings, which are viewed live not just in the US, but internationally.
Suzy Chapman
Thank you, Suzy, for sharing this information about the upcoming meeting. The CFSAC has posted a notice about changes to the upcoming meeting at http://www.hhs.gov/advcomcfs/notices/n101811.html.
There is a very important issue missing from the agenda: changing the name, which is a curse doing a disservice to patients. “Chronic fatigue syndrome” minimizes the severity and debility of those who suffer from this illness, thereby minimizing their credibilty. The name is an embarrassment, evoking shame, where none is warranted. Doctors, family, friends, strangers, government agencies are full of doubt. The word syndrome is often overlooked and very often dropped altogether, adding to the confusion. Anyone who’s “tired” thinks they have it. Doctors overdiagnose it, not having bothered to familiarize themselves with an illness so trivial. More and more erroneously diagnosed patients added to the mix contribute to the hodge podge of symptoms; misunderstanding snowballs. The general public assumes an illness with such a name can’t be taken too seriously.
Changing the name could help to alleviate these problems, and it could easily be done starting now, bypassing “official” medical channels. Just refer to it as “chronic fatigue syndrome/myalgic encephalomyelitis” as NIH did at its recent conference. Repeated often enough, at every conference, in every research paper, in every statement and in every press release the new name will enter public consciousness. Eventually, the name “chronic fatigue syndrome” could be dropped and vanish from the earth.
In this way the patients’ burden of embarrassment and skepticism from others would be lightened without having to wait for the discovery of the cause or the cure. The patients deserve an appropriate name that describes their illness and commands respect.
Thank you.
I agree. In fact I go further and urge everyone to use the term ME. You can start a conversation or comment with ME (“CFS”) then switch to just ME. Every time we repeat “CFS” we just embed it further into people’s minds as the name to use. Starve “CFS” out of existence!
I certainly urge CAA to use ME. Kim McCleary is an opponent of using ME. She forced out founder Marc Iverson because, inter alia, he wanted to change the name of CAA to MEAA. Time for a new leader and a new name- MEAA.
Because of the importance of this issue to the CFS community, since 1998 the Board of Directors has maintained authority for setting and communicating Association policy on the name change. The Board has supported a name change since the term “chronic fatigue syndrome” was first introduced in 1988. Our position remains that “CFS” is misleading, and that it does not adequately describe the serious and complex nature of the illness. The Board is energized by the high visibility dialogue about the issue and the prospect for progressive action by government agencies. We are actively discussing the latest research and policy developments and their impact on the definition and nomenclature. The Association and its Board are committed to a new name that will facilitate expanded research, improved access to care and benefits, and greater social support for patients and their families. You can learn more about the Association’s involvement in various name change efforts over the years at http://www.cfids.org/advocacy/name-change.asp.
At the Oct. 2010 meeting of the federal CFS Advisory Committee, the committee made a formal recommendation to the Secretary to, “Adopt the term ‘ME/CFS’ across HHS programs.” The CFIDS Association’s Board eagerly anticipates the department’s response to this recommendation.
Founder Marc Iverson’s resignation in 2001 was a painful time of transition for all of us involved with the organization, both personally and professionally. Marc’s passion and dedication to the cause inspire me and he was a tremendous mentor for the 10 years during which we worked closely. He continues to support the Association and remains an inspiration to many of us.
I agree with Jeanne Isenstein’s comments(dated October 27, 2011). I worked for a large health system for the last ten years. I am no longer able to work due to this horrible disease.
Like so many others suffering with CFS, I have been passed around from one physician to the next with high hopes someone could help me. My Primay-Care Provider, Cardiologist, Endocrinologist, Neurologist, Pulmonologist, Rheumatologist and Sleep Specialist could provide no explanation or relief. Therefore, I am now under the primary care of my Psychiatrist. This seems to be the standard care if you aren’t sure what to do for the patient or don’t want to diagnosis it as such.
Chronic Fatigue Syndrome sounds so general. Fatigue is associated with almost everything in Today’s world. The general public seems to think Chronic Fatigue is something you suffer from when you are working to many hours, your kids are wearing you out or you can’t get a good night’s sleep. The common response is, I UNDERSTAND. Í’M WORN OUT TOO. Believe me, I wish it were that simple! This disease is much more than fatigue. It has attacked my central nervous system, impaired my physical motor skills; not to mention I am unable to think straight and make decisions for myself. I feel like I am slowly dying. Some days I am unable to take care of my daily needs, other days I am barely able and occasionally I have a few good days I can go outside of my apartment to enjoy the fresh air.
I haven’t received a paycheck since the first week of June. My long term disability insurance, which I have paid premiums to for the last ten years, just denied my claim. This resulted in my loss of health care benefits. It will be another six months before I find out if I’m eligible for SSD. (I hear approximately 80+% are denied the first time around.) Apparently, this is the NORM according to most CFS support websites I have visited. I have exhausted my 401K and probably will be homeless by the end of the year.
We know for a fact the symptoms worsen with stress. I can not tell you the amount of stress this causes. It’s bad enough to live with this horrific illness, but then to add the lack of support from your healthcare providers, employer, LTD insurance company and let’s not forget the bill collectors. Can you imagine what this is like whn you live by yourself and don’t have another income to rely on?
I have lost all quality of life, but not HOPE. I am a human being that wants desperately for my illness to be taken seriously. I want to know that all of us suffering with this disease matter and we can start by giving this debilitating illness the correct medical terminology it demands. I am a grandmother wanting very much to be able to spend quality time with my grandchildren and be around to watch them grow up. If this disease is not taken seriously…..I have no HOPE!
Sincerely, Wendy L. Ruth
The meeting agenda is now available at http://1.usa.gov/w3hTAI.