The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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11/2/2017 at 3:0O pm (EST) - CDC ME/CFS Stakeholder Conference Call

Discussion in 'Upcoming ME/CFS Events' started by Wally, Oct 23, 2017.

  1. Wally

    Wally Senior Member

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    MARK YOUR CALENDARS

    November 2, 2017

    3:00 pm - 4:00 pm Eastern Time

    CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call
    (*See Disclaimer about this call set forth)


    Call number: 1-888-790-3251

    Participant Code: 3287773

    Contact for MECFS-SEC Conference Call: MECFSSEC@cdc.gov@cdc.gov


    Please mark your calendars for the next CDC Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Stakeholder Engagement and Communication (SEC) Conference Call.

    _____________
    Meeting Agenda

    1) 3:00pm Welcome and Telephone Overview

    2) 3:05pm - Updates from CDC – Elizabeth Unger, PhD, MD
    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention


    3) 3:15pm “Take Home Messages from the 2015 Institute of Medicine Report on ME/CFS”

    a) Lucinda Bateman, MD
    Founder and Medical Director of the Bateman Horne Center

    b) Ellen Clayton, MD, JD
    Craig-Weaver Professor of Pediatrics, Vanderbilt University Medical Center
    Professor of Law, Vanderbilt University School of Law
    Co-Founder, Center for Biomedical Ethics and Society

    c) Peter Rowe, MD
    Professor of Pediatrics, Johns Hopkins Children’s Center
    Director, Children's Center Chronic Fatigue Clinic
    4) 3:45pm Questions fro
    m MECFS SEC Call Mailbox for Guest Speaker and CDC
    _________


    *Disclaimer about conference call: 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 atMECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls. If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov.

    Contact for MECFS-SEC Conference Call:

    MECFSSEC@cdc.gov



     
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  2. Dolphin

    Dolphin Senior Member

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  3. Gemini

    Gemini Senior Member

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    Bump....CDC Conference Call starts in about two hours, today November 2nd./
     
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  4. Nielk

    Nielk

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    If you had sent in a question for this call and it wasn't asked, please pm me.
     
  5. lnester7

    lnester7 Seven

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    How was it? I missed it :(
     
  6. Kati

    Kati Patient in training

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    Hi @Inester. To sum it all, it was business as usual. Things are moving very very slowly in the ME world especially at the government level. Dr Unger mentioned there will be a talk at a national public health conference where Dr Lily Chu, Dr Montoya and her will speak, I believe it is sometime next week.

    The most interesting part of the talks was to hear Dr Rowe wondering why Kathy Rowe’s clinical trial (Australia, not related to him) on IVIG has never been replicated. (This was 20 years ago)

    Dr Bateman seemed frustrated that patients butted heads about the name. Dr Clayton spoke about how neglected the patients were. There was no suggestions (as far as I remember) as to how to move the field forward. Dr Rowe said things need to happen outside the government level.

    That pretty much sums it all for me.

    There as a mention of the Unrest film and how a screening will be held in Georgia and Dr Unger herself will attend and be part of a panel. Promoting Unrest may well be our solace, that and the brilliant work of our researchers who constantly face the lack of funding.
     
  7. Diwi9

    Diwi9 Senior Member

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    I did like Dr. Bateman's input that we need clinical studies of medications already on the market that can help treat symptoms of ME/CFS, to better inform/instruct clinicians that there is helpful treatment.
     
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  8. Horizon

    Horizon Senior Member

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    What I gathered from the call:

    -CDC MECFS website will have a healthcare provider section. Almost complete.

    -CDC MECFS site will have "patient voice" section with patient stories.

    -CDC having Unrest showing for officials featuring Jen Brea.

    -CDC request topic suggestions be emailed to mecfssec@cdc.gov

    -CDC will offer continuing medical education with webmd, offered on medscape called "spotlight" for 1 yr credit.

    -CDC will be present at forum with experts like Dr. Montoya

    -CDC collaborating with other agencies on MECFS

    -Cosponsoring common data elements project
     
  9. Gemini

    Gemini Senior Member

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    Agree @Kati.

    And with competition among IVIG manufacturers-- CSL Behring, Shire, Grifols, Biotest Pharmaceuticals, Bio Products Laboratory, Kedrion, and Octapharma-- perhaps one of them might be interested in a clinical trial as Dr. Rowe is indicating is warranted.

    Have patient organizations reached out to IVIG manufacturers about a trial, one wonders?
     
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  10. duncan

    duncan Senior Member

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    Not withstanding its use to prevent infection, I've often wondered why the implications of IVIG's success - even in immune dysfunction cases like Lupus - don't overtly suggest infections of some sort are at play.

    Regardless, I believe pwME would still have to qualify for insurance coverage (at least in the US) by failing a vaccine challenge before coverage for the pricey IVIG therapy would be allowed.

    Still worthy of a trial, obviously.
     
    Diwi9 likes this.
  11. Wally

    Wally Senior Member

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    Bump
     

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