The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
Discuss the article on the Forums.

CDC outreach Conference Call, Jan. 14 2013

Discussion in 'General ME/CFS News' started by Andrew, Dec 6, 2012.

  1. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    I received this via email:​
    MARK YOUR CALENDARS
    Monday, January 14, 2013
    3:00 pm - 4:00 pm EST
    CDC CFS Patient-centered outreach and communication activity (PCOCA) Conference Call
    Please mark your calendars for the next CDC Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) Conference Call.
    Call information will be posted and emailed in early January 2013.​

    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 “Redefining Exercise in CFS through Reconstruction of Aerobic Capacity”
    Nancy Klimas, MD
    Director, Institute for Neuro-Immune Medicine
    Connie Sol, PhDc
    Clinical Exercise Physiologist, Institute for Neuro-Immune Medicine

    3:45pm Questions from CFSPCOCACall Mailbox for Guest Speakers

    3:50pm Questions from CFSPCOCACall Mailbox for 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:



    The CFSAC Support Team
    http://www.hhs.gov/advcomcfs/index.html

    Sign up for the CFSAC listserv to receive the latest updates about CFSAC:
    http://www.hhs.gov/advcomcfs/cfsac_email_list.html
     
    Merry likes this.
  2. *GG*

    *GG* Senior Member

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    Concord, NH
    I think I received this email also, believe the header part is supposed to say 3 PM to 4PM, only 1 hour long, not 13!

    GG
     
  3. Andrew

    Andrew Senior Member

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    Los Angeles, USA
    I'm having trouble getting motivated to respond to this. I feel like I should do it to show interest. But I don't have any questions. I know what Klimas does, and I also know that the CDC is so political I'm not going to get an on-point answer about what they do.
     
  4. Nielk

    Nielk

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    I understand how you feel Andrew.
    This is the first that I see this. I wonder what they mean by “Redefining Exercise in CFS through Reconstruction of Aerobic Capacity”? It's hard to tell by the title but, every time I read the words "excercise" and "CFS" in the same sentence, I seem to develop a nervous itch.
    I have to think about what question one could ask. Maybe others have ideas? I'm just worried that if no one shows any interests in this, they will think no one cares?
     
    justinreilly and *GG* like this.
  5. Hope123

    Hope123 Senior Member

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    I would try to tune in primarily to hear if CDC's has changed or are thinking of changing their stance on use of exercise testing to diagnose or come up with a reasonable treatment plan for patients. If they are thinking of changing, then that would be very important for patients as they have really not acknowledged exercise testing or abnormal aerobic capacity of patients in any of their prior papers, the website, or other materials. If they aren't, then patients and their supporters will need to continue to pressure CDC to seriously consider the papers and clinical experience out there on exercise in CFS. The words "re-defining" and "re-construction" are intriguing to me. I hope people try to listen in....not only because it helps the government to know that people are interested but also, if we don't know where our adversaries stand on an issue, we won't know how to engage or change their minds. You know the old saying "Keep your friends close but your enemies closer."
     
    Valentijn, *GG* and Nielk like this.
  6. justinreilly

    justinreilly Senior Member

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    NYC (& RI)
    I hate that Klimas plays up exercise as a treatment so much. It's why CDC loves her and probably one reason she gets so many NIH grants. The dangers of recommending exercise as a treatment just clearly hugely outweigh any possible benefit.
     
    beaker likes this.
  7. Hope123

    Hope123 Senior Member

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    Justin, Dr. Klimas is my doctor and I would disagree that she plays up exercise; I've seen enough of her videos and research papers as well to know that is not true. I would also caution people about judging what researchers and physicians do when they work with the CDC. Under government rules, if they have a "grant" researchers and physicians may be allowed more freedom than when they are under "contract." It's now like CDC doesn't vet the materials they put out under their institution. With materials produced by CDC, it's possible that the best ME/CFS specialists can do right now is to mitigate any damage; it's harder to change CDC views as we know.
     
    Valentijn likes this.

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