#121~ CFSAC this week-Please Read~ THx♥

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CFSAC Demonstration NIH & CDC
ME/CFS Patients Advocate for Patients

Time:   
Tuesday at 8:00am - Wednesday at 5:00pm
Location:   
Holiday Inn Hotel Washington-Capitol
550 C Street, S.W.
Washington, DC
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ME/CFS Patients Advocate for Patients :
Email me at bobmiller42@msn.com if you will attend CFSAC for more details
Please SEND an email and let us KNOW you WILL attend either from HOME or in Person.
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WASHINGTON, D.C. – On Nov. 8, patients with ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) will protest against 25 years of neglect by the National Institutes of Health and the U.S. Centers for Disease Control. The protest will greet members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) just before they begin their bi-annual meeting at the Holiday Inn Capitol, Columbia Room, 550 C St. S.W., Washington D.C.
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Patients attending CFSAC Protest will be provided with Shirts and Props:
We will also have access to Wheel-chairs for those needing assistance
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Patients unable to attend CFSAC can be with us via the Web:
Make your own signs, shirts and Banners then post pictures on your own Facebook Page and on the Facebook Page for this Event.
We will update you with video from CFSAC as possible, Watch for updates on the websites that will be posting video & information:
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Contact via email the representatives from DHHS listed below starting after 5 pm on Nov.7th Eastern and by Nov. 8th. at 8 am Eastern, so we will have their undivided attention AT the meeting.
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TO:
nancy.lee@hhs.gov,
BCC:
howard.koh@hhs.gov, and at ash@hhs.gov,
wanda.jones@hhs.gov,
kathleen.sebelius@hhs.gov,
francis.collins@nih.gov,
afauci@niaid.nih.gov,
BCC: to me at hebs1reel@yahoo.com to track the numbers
Thank You !!

Let them KNOW you resent their descriminating against OUR RIGHTS to be able to access the meeting LIVE since SO Mamny of us have Sensory overlaod and Must turn the Audio DOWN and READ the closed captioning~
Have then NOT been listening to the Testimonies for the last many years ???
WHO are the DEAF ones here ?

1) Let them KNOW we will NOT be Silent for another 25 years and it's TIME to PUT these patients First and 2) get some ACTUAL Correct info out to the MDs that treat us out in the REAL World and 3) to start addressing the issue of Disability for those that have Fallen thru the cracks because of their 25years of lack of addressing this disease, 4) and time for the NIH 
to Fund some CLINICAL TRIALS NOW~
5) Treat those w/o Disability that have been sick for 20+ years and STOP this Genocide that is in it's 3rd Generation.. 6) and tell the FDA to leave our Supplements alone !!! 7) Adopt the 2011 CCCriteria for M.E. and 8) FIX that CDC website that is an International Embarassment and source of Abuse for aboit 15 million people.
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Those that are able to attend will do our part. We know you will Stand with us, YES ?
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Together we will move science forward,
United We Stand, Divided We Stay home for another 25 years.
So get your signs ready in Person AND ONLINE ♥ Thank you All
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Agenda – CFSAC Fall 2011 Meeting
November 8, 2011

9:00 am    (Eastern Standard Time, USA)
Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:10 am    International Classification of Diseases-Clinical Modification (ICD-CM)
                by Donna Pickett, RHIA, MPH
National Center for Health Statistics
10:00 am    Public Comment    Public
11:15 am    Break   
11:30 am     Welcome Statement from the  Assistant Secretary for Health   
                Howard K. Koh, M.D., Ph.D
12:00 pm     Agency Updates: AHRQ, CMS, FDA, HRSA    Ex Officio Members
1:00 pm    Subcommittee Lunch = Subcommittee Members
2:00 pm    Public Comment by Public
2:45 pm    Break   
3:00 pm      Future Interdisciplinary Research for CFS Utilizing a Variety of Scientific
Disciplines: lead by Gailen Marshall, M.D., Ph.D. and Committee Discussion
4:00 pm      Committee Discussion
Past CFSAC Recommendations    by Committee Members
5:00 pm    Adjourn     
*************************************
Agenda -- CFSAC Fall 2011 Meeting
November 9, 2011
9:00 am    (Eastern Standard Time, USA)

Call to Order
Opening Remarks

Roll Call, Housekeeping
Christopher R. Snell
Chair, CFSAC

Nancy C. Lee, M.D.
Designated Federal Officer
(Wanda's replacement)

9:15 am    HHS Office on Disability    Rosaly Correa-de-Araujo, M.D, M.Sc.,Ph.D
Deputy Director, HHS Office on Disability
10:00 am    Centers for Disease Control and Prevention Webpage   
Eileen Holderman, Nancy G. Klimas, M.D., and Ermias Belay, M.D.
10:30 am    Break   
10:45 am    Agency Updates: CDC, SSA, NIH-Ex Officio Members
11:45 am    Minimal Elements for Papers-Leonard A. Jason, Ph.D.
12:15 pm    Subcommittee Lunch = Subcommittee Members
1:15 pm    Public Comment-Public
2:15 pm    Break   
2:30 pm    Committee Discussion
Finalize Recommendations by Committee Members
4:30 pm    Adjourn   

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INFO from the CFSAC below, proving they are NOT accommodating patients with "sensory overload" for this meeting that MUST "Read the captions" let alone those with "Hearing Disabilities." THIS is just ONE Reason we are Protesting.... NO LIVE VIDEO this time !!
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Audio Call-In Information
PLEASE Call in and SHOW them the NEED that we ARE Listening.. and we NEED the LIVE video!

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: 1-(866)-395-4129

Please use the following passcodes for each day:
Passcodes:
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.

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