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Announcment - CDC’s CFS Patient-centered outreach and communication activity (PCOCA) Conference Call

Discussion in 'General ME/CFS News' started by CJB, Aug 8, 2012.

  1. CJB

    CJB Senior Member

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    Abercrombie, Ann (HHS/OASH) Ann.Abercrombie@hhs.gov via list.nih.gov

    5:55 AM (4 hours ago)
    [​IMG]

    [​IMG]

    [​IMG]

    to CFSAC-L
    [​IMG]





    MARK YOUR CALENDARS
    Thursday, August 9, 2012
    11:00 am - 12:00 pm EDT
    CDC’s CFS Patient-centered outreach and communication activity (PCOCA) Conference Call
    We invite you to attend the first CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call. The call information is listed below. Please note that questions for the Guest Speaker 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.



    ACCESS INFORMATION
    Please note: this call will NOT be recorded.

    Toll-free Number: 866-705-4314
    Participant passcode: 78687644 (Participants will be in listen mode)

    A limited number of phone lines are available for each call, thus, if possible we kindly request if there are multiple participants in one location that you dial-in on a single line. Thank you for your cooperation.


    Meeting Agenda

    11:00am Welcome and Telephone Overview

    11:10am Updates from CDC – Elizabeth Unger, PhD, MD
    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention

    11:25am Expert Guest Speaker – Leonard Jason, PhD
    Director, Center for Community Research, DePaul University
    Issues in Identifying Similar Participants for CFS Studies”

    11:45am Questions from CFSPCOCA Mailbox for Guest Speaker

    11:50am Questions from CFSPCOCA Mailbox for CDC

    Please note that questions for the Guest Speaker and CDC can be submitted only via email atCFSPCOCACall@cdc.gov. This mailbox cannot respond to inquires received and is in use only for the scheduled CFS PCOCA calls.

    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.
    Contact for CFSPCOCA Conference Call:

    For More Information about CFS at CDC:


    WillowJ likes this.
  2. CJB

    CJB Senior Member

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    It won't be recorded and participation is limited. Argggghhh. 24-hours notice. Arghhh.
  3. Dreambirdie

    Dreambirdie work in progress

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    This really sucks! I am going to add myself to the call list, maybe just so I can complain about how unfair it is to give us so little notice.
  4. Sasha

    Sasha Fine, thank you

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    It's possible to buy digital recording devices that you plug into your phoneline that allow you to record phone calls yourself.
  5. CJB

    CJB Senior Member

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    I have RecordiaPro. If I can get into the call, I'll try to record Lenny's portion at least.
    Dolphin likes this.
  6. CJB

    CJB Senior Member

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    Abercrombie, Ann (HHS/OASH) Ann.Abercrombie@hhs.gov

    11:29 AM (11 minutes ago)
    [​IMG]

    [​IMG]

    [​IMG]

    to OS, me
    [​IMG]





    Any feedback or questions regarding the CFS call sponsored by CDC should be directed to the CDC.

    The Office on Women’s Health is just relaying information about the call.
  7. Firestormm

    Firestormm Senior Member

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  8. CJB

    CJB Senior Member

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    If you want to participate in the call, from the info I've been able to gather from several phone calls to the Office of Women's Health (only responsible for sending the announcement, otherwise clueless) and the CDC ("What meeting? My best guess would be...") you need to send an e-mail to CFSPCOCACall@cdc.gov

    It was also suggested that any feedback regarding short notice, limited participation, no recording, etc. be sent to the same e-mail addy.
    Nielk likes this.
  9. Nielk

    Nielk

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    Thanks CJB for making us aware of this.
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I won't be awake for this call. Hoping someone can record the whole thing. Have emailed asking them to answer dr. Grobstein's questions.
  11. lnester7

    lnester7 Seven

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    I don't understand, I do not need to register to just listen right?
  12. xchocoholic

    xchocoholic Senior Member

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    Correct me if I'm wrong but I only see 15 minutes for answers to questions starting at 11:45.
    And that's broken up into 5 and 10 minutes based on which mailbox the question went to.

    Dr unger then leonard jason have the floor / phone ? until then.

    This just seems weird to me. If they have something new to say, why
    did they chose this method of communication ? And why isn't this being recorded ?
  13. CJB

    CJB Senior Member

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    The person I spoke with at the CDC read the e-mail, said she didn't know, but her interpretation was we needed to send an e-mail to "register" to listen in on the call. She made the common-sense suggestion to phone in 10 minutes early.

    I sent an e-mail to the addy above asking for clarification, but I'm sure the offices are closed by now and I don't expect an answer, but will post one if I receive it.
  14. CJB

    CJB Senior Member

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    Read it again, and weep. This is CDC's CFS Patient-centered outreach and communication activity.

    Patient centered.

    Outreach and communication.

    We're so screwed.
    justinreilly likes this.
  15. xchocoholic

    xchocoholic Senior Member

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    I'm a patient and I can be reached via video or in writing easier than by phone.

    What gives ?
    WillowJ and justinreilly like this.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    justinreilly likes this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I feel so empowered and helped by the new patient-centered approach! Thank you, Dr. Unger, things really are changing at CDC for us! She's only been in charge for how long now, and she's making all these great changes happen. We should really back off from criticizing her and give her a few more years to make some more huge changes to the program. Vomit!!
    Sing likes this.
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Actually this call is so not patient-centered it probably violates federal law.
  19. CJB

    CJB Senior Member

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    That's a total of 15 minutes for questions. I just noticed the "Welcome" is scheduled for 10 minutes.

    Hopefully, something positive will come of this. If we can just get the message across that the website has got to change, that would be great. My question addressed the CBT/GET info vs what Pacific Fatigue Labs is doing. They just have to get more accurate and up-to-date information on there, even if they don't want to adopt the new primer.
    justinreilly likes this.
  20. Dreambirdie

    Dreambirdie work in progress

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    Reeves legacy continued. THANK YOU CDC!
    (if there was a middle finger icon, that's what I'd use here.) :mad: :mad: :mad:
    justinreilly likes this.

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