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CDC PCOCA conference call on 2/23/2015 with Dr. Montoya and Dr. Unger

Discussion in 'Upcoming ME/CFS Events' started by Wally, Jan 24, 2015.

  1. Wally

    Wally Senior Member

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    http://www.cdc.gov/cfs/meetings/index.html

    Additional information about this phone conference received from the CDC by e-mail notification.
    The next CDC CFS PCOCA Conference Call is scheduled for this Fall, at this time no specific date has been set for this call. If you would like to receive an e-mail notification regarding the upcoming phone conference on 2/23/2015 and about future phone conferences, then send a request to this e-mail CFSPCOCACall@cdc.gov to request that you be added to the CDC's CFS PCOCA Conference Call list. Information about these calls is usually released about 4 to 6 weeks prior to the call and a reminder notification is sent out about a week before the call. If any changes are made to the phone conference, this information will also be sent out via e-mail notification and should appear on the CDC website once the website is updated. See, http://www.cdc.gov/cfs/meetings/cfspcoca.html

    *Special thanks to @Denise for providing additional information about this phone conference that has not yet been updated on the CDC's website at the CFS PCOCA Conference Call page - http://www.cdc.gov/cfs/meetings/cfspcoca.html.
     
    Last edited: Feb 2, 2015
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  2. Hope123

    Hope123 Senior Member

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    You may want to check with Dr. Unger's office again as the website meeting page does not list much information but then I was directed to this other page by someone where the agenda, data, time, passcode are listed. The date there is STILL FEBRUARY 23:

    http://www.cdc.gov/cfs/meetings/cfspcoca.html
     
  3. Denise

    Denise Senior Member

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    In addition to the CDC website indicating that the call is on the 23rd, the email sent out by the CDC listserv says February 23rd:

    MARK YOUR CALENDARS
    Monday, February 23, 2015
    3:00 pm - 4:00 pm EST
    CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call
    Call number: 1-888-989-3481
    Participant Code: 7298996

    Please mark your calendars for the next CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call.
    Meeting Agenda
    3:00pm Welcome and Telephone Overview
    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD
    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention
    3:15pm "Stanford ME/CFS Initiative: Collaboration, Innovation and Discovery"
    Jose Montoya, MDProfessor of Medicine

    Department of Medicine, Division of Infectious Diseases and Geographic Medicine

    School of Medicine Stanford University, Stanford, California

    3:45pm Questions from CFSPCOCA Call Mailbox for Guest Speaker and CDC
    Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.
    Please note that questions for the Guest Speakers and CDC can be submitted only via email at CFSPCOCACall@cdc.gov. This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls. If you would like to be added to the call list, please send an email to CFSPCOCACall@cdc.gov.
    Contact for CFSPCOCA Conference Call:
    CFSPCOCACall@cdc.gov
     
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  4. Wally

    Wally Senior Member

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    Here is updated information about the CDC Phone Conference scheduled for 2/25/2015. (Note - I will update this information when the address for the Mailbox to receive questions for this phone conference is available. I am also trying to confirm the correct address to use to sign-up to receive future e-mail notifications about these phone conferences. It is also my understanding that another phone conference is planned for the Fall, but no specific date has for this conference is currently available.)

    CDC CFS Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call

    The next CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call will be held on February 23, 2015.

    Call number: 888-989-3481
    Participant Code: 7298996

    Meeting Agenda
    Time Agenda Details
    ___________________________________________________
    3:00pm
    Welcome and Telephone Overview
    ________________________________________________________
    3:05pm Updates from CDC - Elizabeth Unger, PhD, MD
    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention
    ________________________________________________________
    3:15pm "Stanford ME/CFS Initiative: Collaboration, Innovation and Discovery"
    Jose Montoya, MD

    Professor of Medicine
    Department of Medicine, Division of Infectious Diseases and Geographic Medicine
    School of Medicine Stanford University, Stanford, California
    ________________________________________________________
    3:45pm Questions from CFSPCOCACall Mailbox for Guest Speaker and CDC
    ________________________________________________________
     
  5. Denise

    Denise Senior Member

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    @Wally - as you note the CDC PCOCA calls have been taking take place twice a year and the call date is usually announced about 6 weeks ahead.


    I think some of the answers to your other questions - submitting questions and signup are here:
    Mailbox to submit questions for PCOCA call:
    "Please note that questions for the Guest Speakers and CDC can be submitted only via email at CFSPCOCACall@cdc.gov. "

    To be added to the listserv:
    "If you would like to be added to the call list, please send an email to CFSPCOCACall@cdc.gov."
     
  6. Wally

    Wally Senior Member

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    @Denise,
    Our posts were crossing. I had tried to update this information this morning, but I no longer had editing rights on my original post so I had sent a report to the moderation staff to see if they could update this information. When it did not look like the update had taken place, I was typing up a new post and I think that is when our posts crossed. Thanks for adding the information that you received.

    I have been in contact this morning with CDC to ask about the mailbox address that will be used to receive questions for this call, as well as the best way to receive notifications about future ME/CFS Phone Conferences. I was told that the CDC does not have a specific listserv sign-up on their website just for CFS, but they have another list that they keep if people are interesting in receiving notification about these phone conferences.

    Not sure if you have any other information about these phone conferences, but this is what has been relayed to me via e-mail from the CDC.
     
  7. Wally

    Wally Senior Member

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    @Denise,
    Yikes - again are posts are crossing. Thanks for all the information, you are a much faster source of information than the CDC. :D

    I will send a message to a moderator to see if all this information can be combined into one post to make it easy for people to follow.
     
  8. Denise

    Denise Senior Member

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    @Wally - I don't think I have any additional information about the phone conferences. I had originally heard a bit about the upcoming PCOCA call during the December CFSAC webinar and I received the additional info via the listserv.
     
  9. Denise

    Denise Senior Member

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    @Wally - I am glad to help when I can. :)
     
  10. Sasha

    Sasha Fine, thank you

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  11. halcyon

    halcyon Senior Member

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    As best I can tell, questions can be submitted via email to CFSPCOCACall@cdc.gov. Someone please correct me if I'm wrong.
     
  12. Sing

    Sing Senior Member

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    New England
    Just listened to Science Friday on npr.org about current research on women and alzheimer's risk. Nearly ⅔ of alz patients are women. The neurologists said that starting at perimenopause about 10% of women get a deficiency of estrogen which affects how their brains can get fuel. Instead of glucose, these women start to have to use ketones. The neurologists described this onset scenario as a lack of energy in the brain. It is not only the presence of the particular cellular or mitochondrial DNA precursors but the reduction in estrogen in the brain.

    I hope that Dr. Montoya will touch on the issue of hormonal insufficiency as it relates to ME/CFS or SEID, with a consequence of cognitive and memory problems, insomnia (they also mentioned that symptom), and a lack of energy in the brain. I understand it won't be exactly the same as with SEID but I wonder if there are links here....
     
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  13. Sasha

    Sasha Fine, thank you

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    Bump!

    This is tomorrow.
     
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  14. WillowJ

    WillowJ คภภเє ɠรค๓թєl

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    this is coming up
     
  15. beaker

    beaker ME/cfs 1986

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    Will it be recorded ? And if so , where posted.
    Thanks.
    @Wally @Denise
     
  16. Denise

    Denise Senior Member

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    To my knowledge PCOCA calls are not officially recorded. I believe that sometimes patients have recorded them for their own reference (but they don't get posted).
     
  17. Anne

    Anne Senior Member

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    Anyone up to recording and posting?

    Or transcribing?
     
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  18. beaker

    beaker ME/cfs 1986

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    Would be much appreciated. I have in home health services at that time. It seems like every time something is scheduled I do!!!
     
  19. Sasha

    Sasha Fine, thank you

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    Bump again - I think this is in a couple of hours or something.
     
  20. Tuha

    Tuha Senior Member

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    I think CDC will surprise us with a cure medicament. just imagine...
     
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