Friday, September 4, 2009

Advocacy Alert: CFS Advisory Committee to meet in October

This just in from the CFIDS Association:

CFS Advisory Committee to meet in October

The federal CFS Advisory Committee will meet next on October 28-29, 2009 in Washington, D.C. The meeting is open to the public and time has been reserved on the agenda to hear testimony from members of the public.

Posted below is the September 4, 2009 meeting notice from the Federal Register, which can be viewed at

[Federal Register: September 4, 2009 (Volume 74, Number 171)]
[Page 45857]
From the Federal Register Online via GPO Access []


Meeting of the Chronic Fatigue Syndrome Advisory Committee
AGENCY: Department of Health and Human Services, Office of the Secretary, Office of Public Health and Science.

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 Thursday, October 29, 2009, and Friday, October 30, 2009. The meeting will be held from 9 a.m. until 5 p.m. on both days.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201.

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, Dr.P.H.; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201; (202) 690-7650.

CFSAC was established on September 5, 2002. The Committee was established to advise, consult with, and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) The current state of the knowledge and research about the epidemiology and risk factors relating to chronic fatigue syndrome, and identifying potential opportunities in these areas; (2) current and proposed diagnosis and treatment methods for chronic fatigue syndrome; and (3) development and implementation of programs to inform the public, health care professionals, and the biomedical, academic, and research communities about advances in chronic fatigue syndrome.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site,, when it is finalized. In addition, the meeting will be WebCast. Details will be posted to the CFSAC Web site as they become available.

Public attendance at the meeting is limited to space available. Individuals must provide a photo ID for entry into the building where the meeting is scheduled to be held. Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person. Members of the public will have the opportunity to provide comments at the meeting. Individuals who wish to address the Committee during the public comment session must pre-register by October 14, 2009. Any individual who wishes to participate in the public comment session should call the telephone number listed in the contact information or send an e-mail to to register. Public comments will be limited to five minutes per speaker.

Members of the public who wish to have printed material distributed to CFSAC members for discussion should submit, at a minimum, one copy of the material to the Executive Secretary, CFSAC, prior to close of business on October 15, 2009. Submissions are limited to five typewritten pages. Contact information for the Executive Secretary is listed above.

Dated: August 20, 2009.
Wanda K. Jones,
Executive Secretary, CFSAC.
[FR Doc. E9-21334 Filed 9-3-09; 8:45 am]


I attended the CFSAC meeting in May 2009 and gave public testimony. The day after I spoke, I started this blog. Unfortunately, I don't think I will be able to attend the October meetings because of my work schedule during those days. If my schedule changes, however, you can bet I'll be in Washington, DC for the meeting.

If you have CFIDS/CFS/ME (or if you know someone with it) and are physically and financially able to attend, I encourage you to go and give your personal testimony about how this horrible disease has affected your life.

If you can't go in person, give your story by phone if they allow phone testimony (they did last time). If you are not physically able to call in, then send in your written story. If it is too difficult to write, then know that there are people at the meeting who are still advocating for you.

The more we make our presence known, the bigger difference we'll make!

Today's Activities: work. Today's Most Annoying Symptoms: exhaustion, headache, brain fog, slightly achy lymph nodes in neck.

Mood (10 is best): 6
Energy (10 is best): 4
Physical Discomfort (10 is worst): 3


Janis said...

I'm thinking of going to the meeting. What is it like? Do I have to stay the whole time in order to give my testimony? 9 to 5 would be too much for me to do in one day much less 2 days in a row. Thanks for posting this link.

alyson said...

Hi Janis - I hope you can go! You definitely do NOT need to stay the whole time, nor do you need to go both days. You can just show up for your speaking time.

Just make sure you contact the CFSAC contact person to request a speaking time so that you know when to go. Be sure to get there at least 30 minutes before your assigned time to get checked in and escorted to the meeting location.

I brought notes with me to make sure I stayed under my 5 minute limit and just in case I got nervous (which I did). I wore comfortable business casual attire.

There won't be a lot of people in the audience, but there will be members of the government who are a part of the CFSAC. If you are able to attend, make sure you mention all the others with this disease who aren't able to leave their homes to be there.

Keep us posted!

Janis said...

Thanks Alyson. I'm going to see if my mother will also testify. And another friend who is well enough to travel.