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

CDC ME/CFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call, June 3 at 3:00pm

Discussion in 'General ME/CFS News' started by MeSci, May 23, 2019.

  1. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
    1,731
    Likes Received:
    10,849
    Location:
    Cornwall, UK
    Source: National Institutes of Health

    Date: May 21, 2019

    URL: http://list.nih.gov/cgi-bin/wa.exe?A0=CFSAC-L

    Ref: https://www.cdc.gov/me-cfs/programs/meetings.html

    CDC ME/CFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call, June 3 at 3:00pm
    ---------------------------------------------------------

    CDC's next ME/CFS Stakeholder Engagement and Communication call is scheduled for June 3, 3:00 pm EDT. No registration is required.

    Dial-in information:

    Call number: 1-888-790-3359

    Participant Code: 4299828

    For more information about this call, please visit:

    https://www.cdc.gov/me-cfs/programs/meetings.html

    Contact for MECFS-SEC Conference Call:

    MECFSSEC@cdc.gov

    (This is all the info I have)
     
    Barry, Esther12, Tom Kindlon and 3 others like this.
  2. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,319
    Likes Received:
    18,716
    Location:
    Canada
    Are the organizations involved in this? MEAction, SMCI, OMF? Patients can't handle this, we can't prepare or hold our own in this kind of setting. These things are happening without significant involvement from advocates who can hold the CDC accountable and it just allows deniers to control the flow of information that makes its way into government decision-making.
     
    duncan, DokaGirl, Wonko and 2 others like this.
  3. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    206
    Likes Received:
    1,177
    @rvallee - there isn't a lot of input on these calls other than questions that must be submitted ahead of the call.


    June 3, 2019
    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 Pacing in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome & Fibromyalgia
    Alison C. Bested M.D. FRCPC
    Diplomate, Integrative Medicine
    Associate Professor and Chair Integrative Medicine
    Institute for Neuro-Immune Medicine
    Dr. Kiran Patel College of Osteopathic Medicine
    Nova Southeastern University, Fort Lauderdale, Florida
    3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC (https://www.cdc.gov/me-cfs/programs/meetings.html)
     
    DokaGirl, rvallee and MeSci like this.
  4. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    694
    Likes Received:
    5,148
    Why on earth do we need more education on pacing, when the CDC could have gotten someone such as Ron Davis, Jarred Younger, or even Dr Klimas who could speak about her clinical trials?

    This is absolutely frustrating from my point of view.
     
    duncan, DokaGirl, mango and 8 others like this.
  5. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    3,807
    Likes Received:
    25,653
    Location:
    UK East Midlands
    If the only input is presubmitted questions what’s the point of using this “meeting” format it might as well or more accessibly for people with ME be done as blog from Unger and guest blogs.
     
    DokaGirl, rvallee and alktipping like this.
  6. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    206
    Likes Received:
    1,177
    (I am not being flippant) - that'd be a good question to ask them.

    ETA - (this is from their listserv email)
    "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.



    Contact for MECFS-SEC Conference Call:

    MECFSSEC@cdc.gov "
     
    DokaGirl and MeSci like this.
  7. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    3,807
    Likes Received:
    25,653
    Location:
    UK East Midlands
    I’m not in US though so probably best for someone from there to pick up
     
    DokaGirl and MeSci like this.
  8. Dudden

    Dudden Established Member (Voting Rights)

    Messages:
    68
    Likes Received:
    187
    Why do they feel the need to discuss pacing? This is not a talk show or "The Doctors". What a waste of time.
     
    DokaGirl, Milo and rvallee like this.
  9. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,319
    Likes Received:
    18,716
    Location:
    Canada
    [​IMG]
     
    Sing, LadyBirb, DokaGirl and 3 others like this.
  10. Dudden

    Dudden Established Member (Voting Rights)

    Messages:
    68
    Likes Received:
    187
    Good point. Where is that from anyway?
     
    DokaGirl likes this.
  11. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,319
    Likes Received:
    18,716
    Location:
    Canada
    Ha. Don't know. I just see it often.
     
    DokaGirl likes this.
  12. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    2,319
    Likes Received:
    18,716
    Location:
    Canada
    Doesn't look like it went well.







    What's even the point of those? Where the hell is $5M per year going then? This is beyond embarrassing given the recent acknowledgements this is borderline criminal misuse of public resources and indifference to a major public health crisis.
     
  13. NelliePledge

    NelliePledge Senior Member (Voting Rights)

    Messages:
    3,807
    Likes Received:
    25,653
    Location:
    UK East Midlands
    :wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf::wtf:

    “Do gooders” who think they’re on your side are more dangerous than out and out snake oil merchants
     
  14. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    694
    Likes Received:
    5,148
    The focus on pacing needs to be reserved for new patients. Presenting the same stuff (pacing, meditating, gentle exercises) over and over is insulting. Patients are not stupid. On one side you have doctors and researchers involved in research and cutting edge, and on the other side you have doctors who sell books, focuses on the social determinants of health, on acceptance and taking care of the soul. I am very disappointed that CDC is pressing for that when there is so much work that needs to be done.

    I am glad I didn’t watch.
     
    Last edited: Jun 11, 2019
  15. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    2,958
    Likes Received:
    21,702
    Location:
    UK
    I'm stupid, but I did figure out, eventually, that running head first into a wall was not helping and that the current advice to do so was probably motivated by either malice or people who didn't understand what a wall was.
     
  16. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    1,700
    Likes Received:
    14,130
    At least you know the snake oil merchant is only after your money.
     
    Last edited: Jun 4, 2019
  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    3,369
    Likes Received:
    28,534
    Location:
    UK



    eta: apparently they 'ran out of time' to answer patients questions!?? I thought that was the whole point of these calls(?)
     
    Last edited: Jun 4, 2019
  18. Snowdrop

    Snowdrop Senior Member (Voting Rights)

    Messages:
    1,001
    Likes Received:
    6,363
    I am sorry to those patients who participated expecting something useful. I wasn't there but the idea they sang a song at you is creeping me out significantly. Shame on them. I think it merits a strongly worded public letter as to what people thought of it.
     
  19. Andy

    Andy Committee Member & Outreach

    Messages:
    7,345
    Likes Received:
    54,319
    Location:
    Hampshire, UK
    www.meaction.net/2019/06/05/we-need-effective-strategic-and-respectful-engagement-from-cdc/
     
    Hutan, Esther12, Trish and 10 others like this.
  20. Sean

    Sean Senior Member (Voting Rights)

    Messages:
    1,700
    Likes Received:
    14,130
    Somebody has to be held to account for this appalling crap. :mad:
     
    Hutan, duncan, Esther12 and 9 others like this.

Share This Page