Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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CDC conference call, June 23rd: Jarred Younger on ME/CFS treatments

Discussion in 'Upcoming ME/CFS Events' started by mango, Jun 17, 2016.

  1. mango

    mango Senior Member

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  2. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    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 “Current and Future Research on ME/CFS Treatments – an Update from the Field”
    Jarred Younger, Ph.D.
    Associate Professor, Department of Psychology
    Associate Professor, Department of Anesthesiology and Perioperative Medicine
    Associate Professor, Division of Clinical Immunology and Rheumatology
    Director of the Neuroinflammation, Pain and Fatigue Lab at UAB
    University of Alabama at Birmingham


    3:45pm Questions from CFSPCOCACall 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 inquiries 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
     
    waiting, Billt, Comet and 2 others like this.
  3. mango

    mango Senior Member

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    I can't find any info about livestreaming or if an official recording will be published/archived?

    Anyone planning on recording it? A friend of mine is unable to call in, and she'd be super grateful if someone could make a recording available, or a transcript :)
     
  4. Kati

    Kati Patient in training

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    Hi @mango typically those POCOCA calls are telephone based and not officially recorded or archived. Tyere has been discussions here from patients who listened and shared the information.

    For those from out of country, using skype will cost much less than a regular phone line...
     
    mango likes this.
  5. Sasha

    Sasha Fine, thank you

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    UK
    Bump for this...
     
  6. Kati

    Kati Patient in training

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    Oops I missed it.
     
  7. Kati

    Kati Patient in training

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    From Hillary Johnson on twitter

    [​IMG] Hillary Johnson (@oslersweb)
    2016-06-23, 12:53 PM
    Jarred Younger, guest on CDC patient outreach call, on dearth of drug trials: "There should always be multiple clinical trials going on."

    [​IMG] Hillary Johnson (@oslersweb)
    2016-06-23, 12:56 PM
    Younger: "Where's the problem? Ppl focusing on mechanism. But to get from mechanism to drug can take 10 yrs and we have millions sick now."

    [​IMG] Hillary Johnson (@oslersweb)
    2016-06-23, 12:58 PM
    Date rape drug, GHB, prescribed for narcolepsy, posed by Younger and others as restorative sleep drug for M.E.. Take it and pass out...
     
  8. duncan

    duncan Senior Member

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    "restorative sleep"??
     
    A.B., halcyon and Comet like this.
  9. Kati

    Kati Patient in training

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    Comet and Sasha like this.
  10. Sing

    Sing Senior Member

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    I missed hearing this call yesterday. Does anyone know if it will be posted?
     
  11. Denise

    Denise Senior Member

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    Typically it is not posted by CDC.
    (And that's too bad because often patients/advocates can't join the call in real time.)
     
    Last edited: Jun 24, 2016
  12. Sing

    Sing Senior Member

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    Now I am thinking that maybe Jarred Younger would post it, or else report about it. He is a big communicator with the patient world--with everyone--and does it well. I think that is one of his greatest gifts--not only trying to find intelligent modes of research, to try to bring treatment results to us as quickly and inexpensively as possible, but also to make the links with people, so that the herd of cats we have been, or been dealing with, can come together and find some answers!

    @usedtobeperkytina
     
    Sasha likes this.
  13. Horizon

    Horizon Senior Member

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    He did say not to write down all the medications he was talking about because there were many. He said that list would be made available. How do we get it?
     

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