1. Read the 'News in Brief' post for w/c 16th Sept by clicking here, Guest.
    Dismiss Notice

March 11th CDC Conference Call

Discussion in 'General ME/CFS News' started by Ron, Feb 21, 2019.

Tags:
  1. Ron

    Ron Established Member (Voting Rights)

    Messages:
    68
    Likes Received:
    604
    MARK YOUR CALENDARS


    March 11, 2019

    3:00 pm - 4:00 pm Eastern Time





    CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

    participants please call in using the following information:

    Call number: 1-888-603-8916

    Participant Code: 7907006

    Meeting Agenda


    3:00pm Welcome and SEC Call Overview



    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

    Branch Chief, Chronic Viral Diseases Branch

    Centers for Disease Control and Prevention



    3:15pm “Orthostatic Intolerance: Research and Clinical Insights”

    Benjamin H. Natelson, MD
    Director, Pain & Fatigue Study Center, Mount Sinai Beth Israel, New York, New York

    Professor of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York


    3:45pm Questions from MECFS SEC 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.
    -----------------------------------------------------------------------------------






    Meeting AgendaMECFSSEC@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.
     
    Last edited: Feb 21, 2019
    duncan, WillowJ, Dolphin and 4 others like this.
  2. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    206
    Likes Received:
    1,176
    Meeting Agenda



    3:00pm Welcome and SEC Call Overview



    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

    Branch Chief, Chronic Viral Diseases Branch

    Centers for Disease Control and Prevention



    3:15pm “Orthostatic Intolerance: Research and Clinical Insights”

    Benjamin H. Natelson, MD
    Director, Pain & Fatigue Study Center, Mount Sinai Beth Israel, New York, New York

    Professor of Neurology, Icahn School of Medicine at Mount Sinai, New York, New York

    3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC



    Please note that questions for the Guest Speakers and CDC can be submitted only via email at MECFSSEC@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.
     
    duncan, WillowJ, Dolphin and 2 others like this.
  3. Ron

    Ron Established Member (Voting Rights)

    Messages:
    68
    Likes Received:
    604
    Thanks Denise. I copied and pasted but apparently the agenda part didn't copy over.
    I just revised it to now include it!
     
    Denise likes this.
  4. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,731
    Likes Received:
    10,845
    Location:
    Cornwall, UK
    WillowJ, rvallee and Trish like this.
  5. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,303
    Likes Received:
    16,019
    I just got the e-mail for this.
    Will try to attend.
     
    WillowJ and MeSci like this.
  6. Webdog

    Webdog Senior Member (Voting Rights)

    Messages:
    1,574
    Likes Received:
    10,568
    Location:
    United States
    Bump. Starts 30 minutes from this post.
     
    Esther12, duncan, Andy and 1 other person like this.
  7. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    685
    Likes Received:
    2,678
    Will Natelson prescribe breathing exercises for OI, I wonder? :)
     
    Inara, Webdog and kendonoghue like this.
  8. kendonoghue

    kendonoghue Established Member

    Messages:
    4
    Likes Received:
    13
  9. Trish

    Trish Moderator Staff Member

    Messages:
    15,663
    Likes Received:
    83,882
    Location:
    UK
    I've just listened. I found it interesting. A transcript will be made available later.
    Dr Natelson talked about his 2 current research projects.
    1. Cerebrospinal fluid - investigating whether there are any differences between people with ME, FM and healthy controls. They will measure every protein in the CSF. The patients are all selected as not on any medication that could effect the CSF. They have the samples collected ready to be tested.
    2. Sleep study - again ME and FM comparison. Patients will come into their centre and be connected to instruments and asked to nap. Not a full overnight study.

    Then he talked about orthostatic intolerance.

    POTS - postural orthostatic tachycardia syndrome - related to blood going to legs when standing, so heart rate increases to compensate, caused in ME by low blood volume and by spending too much time lying down. He recommends raising the head of the bed, and trying to sit as much as possible. And compression tights to prevent so much blood pooling in the legs.

    POSH - postural orthostatic syndrome with hyperventilation - caused by breathing too fast or too deeply. Leads to low carbon dioxide in blood that leads to feeling faint. I lost concentration here - can't remember what else he said about it.

    That's all I can remember.
     
    Inara, rvallee, kendonoghue and 10 others like this.
  10. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    693
    Likes Received:
    5,146
    He mentioned very briefly that ME and FM are different diseases (those with ME that also have pain).
    He has a paper pending in that regard, abstract published but not text yet.
     
    Inara, Mij, Webdog and 3 others like this.
  11. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    685
    Likes Received:
    2,678
    I doubt the whole hyperventilation low CO2 variation of POTS. The hyperventilation thingee feels dangerously wrong, ie, going in the wrong direction.
     
  12. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    2,443
    Likes Received:
    12,370
    By hyperventilation does he mean shallow breathing ( air not getting " right down"?), as opposed to say that associated with anxiety?
    Not being able to breathe properly does make my daughter dizzy ( and feeling sick) - I would agree that this isn't POTS- more like a O2/ C02 ratio issue?
     
    duncan likes this.
  13. duncan

    duncan Senior Member (Voting Rights)

    Messages:
    685
    Likes Received:
    2,678
    I'm not sure I recall. I do seem to recall he thought he could correct this with breathing exercises. I know of one so-called ME/CFS expert - not Natelson - who also thought breathing exercises would resolve this low-carbon tidal pool POTS-likecondition, and the person he suggested for the breathing exercises turned out to be a psych.

    I am wary of this.
     
    Inara, Perrier, Chezboo and 2 others like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    1,622
    Likes Received:
    8,030
    Two papers by Natelson on hypocapnia, both over a decade old:


    ---
     
    Hutan, Trish, Amw66 and 2 others like this.
  15. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

    Messages:
    1,071
    Likes Received:
    9,981
    Location:
    Belgium
    Does anyone have a transcript?
     

Share This Page