1. Guest, the 'News in Brief' for the week beginning 23rd November 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice
  3. Guest, NICE have published their draft guideline for ME/CFS, click here to read about it.
    Dismiss Notice

August 21, 2020 IACFS/ME Virtual Conference

Discussion in 'General ME/CFS News' started by Tom Kindlon, Jun 16, 2020.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    13,386
     
    Last edited by a moderator: Jun 24, 2020
    Kitty, JaneL, ahimsa and 11 others like this.
  2. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    1,250
    Likes Received:
    9,305
    Location:
    Oregon, USA
    Thanks, @Tom Kindlon!

    The home page of the IACFS/ME website (https://www.iacfsme.org/) has a similar announcement for the conference, along with this note:
     
    Kitty, Tom Kindlon, Trish and 5 others like this.
  3. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    13,386
    Thanks. I checked and at the time I posted there was nothing on the website.
     
    Kitty and ahimsa like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    7,781
    Likes Received:
    80,551
    Merged thread

    Just to flag up that this meeting is now being run online. Anyone interested in registering, possibly with concessional rates should look at:

    https://www.iacfsme.org
     
    Last edited by a moderator: Jun 24, 2020
  5. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    583
    Likes Received:
    2,154
    Is it just me or is anyone else wondering who they are i.e. IAFCFS/ME?
     
    Kitty likes this.
  6. Trish

    Trish Moderator Staff Member

    Messages:
    27,594
    Likes Received:
    134,957
    Location:
    UK
    Here's what they say on their website:
    https://www.iacfsme.org/
     
    Kitty, adambeyoncelowe and FMMM1 like this.
  7. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    13,386
    Registration is now open for the IACFS/ME 2020 Virtual Conference - Friday, August 21, 2020
    10 AM to 3:30 PM Eastern Daylight Time
    (EDT, New York City, USA)

    <https://www.iacfsme.org/august-21-2020-virutal-conference>

    "We plan to record the meeting so people unable to attend live may watch it afterwards."


     
    Kitty, MEMarge, Trish and 3 others like this.
  8. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,374
    Likes Received:
    44,585
    Location:
    UK
    Merged thread

    Start: 8/21/2020 10:00 AM
    End: 8/21/2020 3:00 PM

    Virtual Conference

    Speakers

    • Dr. James Baraniuk
      • Heart Rate Variability in Exercise-Induced Postural Tachycardia (START) and POTS
    • Dr. Fred Friedberg
      • Why Patients Improve. Why They Get Worse. Model vs. Data in ME/CFS.
    • Dr. Leonard Jason
      • What Do We Know About Risk Factors for Developing COVID-19 and the Aftermath of this Disease
    • Ms. Caroline Kingdon
      • Health Care Responsibility and Compassion - Visiting the Housebound Patient Severely Affected by ME/CFS
    • Dr. Eliana Lacerda
      • The European Network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Main Outcomes, Challenges and Possibilities
    • Dr. Rhonda Jane McKay
      • Low Dose Naltrexone in ME/CFS and FM - the Vancouver Experience
    • Dr. Marvin Medow
      • The Benefits of Oral Rehydration on Orthostatic Intolerance in Children with Postural Tachycardia Syndrome
    • Mr. Daniel Missailidis
      • Dysregulation of Mitochondrial Function and Fuel Preferences in ME/CFS Lymphoblasts
    • Dr. Harvey Moldofsky
      • Insights/Lessons from Post-SARS ME/CFS
    • Dr. Luis Nacul
      • The Impact of COVID-19 on the Risk and Prognosis of ME/CFS
    • Dr. Ina Katrine Pettersen
      • Defective Energy Metabolism in ME/CFS
    • Ms. Violetta Renesca
      • The Effect of Self-Management Group Program on Health Status, Fatigue Severity, and Self-Efficacy in Patients with ME/CFS
    • Dr. Wakiro Sato
      • Immune Dysregulation with Deviated B Cell Receptor Repertoire in ME/CFS
    • Dr. Mathew Schu
      • mapMECFS: A Myalgic Encephalomyelitis Focused Data Portal Supporting Data Discovery Across Multiple Biological Disciplines
    • Dr. Ronald Tompkins
      • The Open Medicine Collaborative COVID-19 on the Risk & Prognosis of ME/CFS
    • Mr. Ryan Whelan
      • ME/CFS and Autoimmune Associated Small-Fiber Neuropathy
    • Dr. Sadie Whittaker
      • Understanding Susceptibility or Resilience to Chronic Effects of COVID-19 and Deepening Our Understanding of ME/CFS
    https://cme.stonybrookmedicine.edu/...-myalgic-encephelomyelitis-iacfs-me/8/21/2020
     
    Last edited by a moderator: Jul 17, 2020
    Kitty, MEMarge, sebaaa and 8 others like this.
  9. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    815
    Likes Received:
    5,520
    6 Institutes @NIH have sponsored an IACFS conference with $35,000 funding

    RESEARCH AND CLINICAL CONFERENCE: INTERNATIONAL ASSOCIATION FOR CHRONIC FATIGUESYNDROME/MYALGIC ENCEPHALOMYELITIS
    https://projectreporter.nih.gov/project_info_description.cfm?aid=9913972&icde=47629625

    It's unclear to me where this money is going as participants for the virtual conference still need to pay. I would understand more if it was for hosting an in person 2 day conference and would allow more investigators to attend......


    As for having 10mins per presenter. Hmmmmmm, I'd much prefer 20mins to get a full flavour of what the investigator is working on.
     
    Last edited: Jul 17, 2020
    Kitty, Andy, shak8 and 3 others like this.
  10. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

    Messages:
    815
    Likes Received:
    5,520
    Last edited: Jul 17, 2020
    Kitty and Andy like this.
  11. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    1,405
    Likes Received:
    13,386
    Kitty and MEMarge like this.
  12. hope123

    hope123 Established Member

    Messages:
    6
    Likes Received:
    54
    Thanks Tom for posting this! And thank you to everyone else for bumping this up and your comments!


    To answer some of your questions:

    1. IACFS/ME is a 30-yr. old professional organization of clinicians and researchers dedicated to researching and taking care of people affected by ME/CFS. Many of the clinicians and researchers you are familiar with are long-time members of IACFS/ME. We are the equivalent of, for example, the American Medical Association or the American College of Physicians or the British Medical Association, albeit we are smaller and specifically directed at professionals engaged in ME/CFS research and patient care. IACFS/ME also welcomes patient and caregiver members interested in supporting scientific dialogue about ME/CFS.

    This is our main website. Our activities include holding international medical conferences every 2-3 years on ME/CFS (see our 2016 program and the numerous other meetings we have held over 3 decades), publishing a peer-reviewed quarterly journal about ME/CFS, publishing clinical guidance like the 2014 Clinician Primer, and advocating for science-backed medical care, research, and healthcare policy.

    Because the organization is run primarily by clinicians, researchers, and other ME/CFS professionals on a volunteer basis (i.e. it is not our job), most of our energy is focused on the above activities and less on other efforts, including publicity. I myself am a medical researcher/ educator. We do not have paid full-time staff. We always welcome volunteers though! If you are interested, e-mail us through the Contact Us form. You can also sign up to receive announcements from us and even join us as an Associate member.


    2. NIH Funding: Originally, we planned to hold a 3.5 day conference in person at Stony Brook University in Stony Brook, NY. Many researchers, clinicians, and organizations submitted work to be presented. However, the original meeting was cancelled due to COVID-19. Since government funding does not allow us to change the original format of the meeting, this virtual meeting is NOT being funded by NIH. We do hope to resume in-person conferences in the future.


    3. Talk formats: For scientific conferences and medical presentations, 10 minutes is not considered an unusually short time. Speakers ideally should be focused and concise. We also want to leave adequate time for discussion and interaction with the audience, often the most lively parts of our meetings.

    Presentations are not meant to cover every study in detail but to highlight/ discuss major findings. In fact, in order to publish a scientific article after a conference presentation, journals prefer that scientists not present every aspect of their research so some new materials is presented when the article is published. Otherwise, the study is considered "already published."

    We also surveyed members and the public previously about how long the wanted a virtual conference to run for and most preferred a shorter format.

    4. Public access: Recognizing the lack of accurate, timely ME/CFS information available, we welcome patients and caregivers to all our meetings. Many of our in-person meetings include talks with content designed and less technical language for patients. Most scientific/ medical meetings do not have patient-oriented sessions nor lower prices for non-professional attendees. For US patient attendees, some may be able to deduct conference registration fees from your taxes: please consult with your personal tax professional.

    Finally, we always have a few writers from the ME/CFS community reporting on the meeting. They cover highlights and occasionally interview speakers. Most of these summaries are made available freely after the meeting.

    Thank you for your interest!
     
  13. hope123

    hope123 Established Member

    Messages:
    6
    Likes Received:
    54
    Also, a unique aspect of our meetings are we do not select pre-select most of our speakers. Anyone can apply to speak at our meetings and they do via an abstract submission site months before a meeting. As far as I know, other ME/CFS meetings do not have the same process. We do that because we want as many different speakers and ideas as possible (solutions do not necessarily come from the most senior researchers or "prestigious" institutions) as long as their scientific method is sound. What that means though is extra time, effort, and resources needed to review many submissions.

    The process is not governed solely by IACFS/ME but intentionally designed to be independently vetted. For this meeting, Stony Brook University's School of Medicine will perform that duty. That helps increase the quality of presentations, allows professionals to receive educational credit for their attendence, and assures any financial conflicts of interest are addressed or resolved.
     
    Kitty, MEMarge, andypants and 5 others like this.
  14. hope123

    hope123 Established Member

    Messages:
    6
    Likes Received:
    54
    Hi, everyone,

    This is just a reminder that registration for the IACFS/ME Virtual Conference closes a day before the meeting. Registration closes THURSDAY, AUGUST 20, at 12 AM. This is to ensure all registrants receive the link to the meeting and the meeting program in a timely manner.

    To find out more about the meeting, visit the main conference web page.

    To register, click here.

    Thanks!
     
    Kitty, MEMarge, andypants and 4 others like this.
  15. hope123

    hope123 Established Member

    Messages:
    6
    Likes Received:
    54
    Are you worried about using Zoom Webinar?

    Are your concerns preventing you from joining our August 21, 2020 IACFS/ME Virtual Conference?


    If so, join IACFS/ME for a LIVE Conference Attendee Rehearsal. This short 10-minute presentation will familiarize you with how to join Zoom and also the Chat/ Question and Answer functions. We will also have additional time for questions. The rehearsal will take place Thursday, August 13, at 8 AM Pacific Standard Time (San Francisco, CA, USA). For your local date/ time, check Time and Date.


    Register in advance for this webinar:

    https://us02web.zoom.us/webinar/register/WN_gdszozFNR1GV1UggV42PZw

    After registering, you will receive a confirmation email containing information about joining the webinar.


    If you are unable to attend, we will be sharing a recording of the rehearsal afterwards with registrants and on our main conference web page. You can also visit this Zoom link for written information on how to participate.

    To register for the conference itself (NOT this rehearsal), visit our main conference web page. Conference registration closes AUGUST 20 at 12 AM EST (New York City, USA). This is one day BEFORE the meeting.
    A link to the recording of the meeting will be shared with registered attendees after the conference.
     
    adambeyoncelowe, Andy, Kitty and 3 others like this.
  16. hope123

    hope123 Established Member

    Messages:
    6
    Likes Received:
    54
    To learn about how to join/ use Zoom for the conference, see this 10-minute video.

    Slides presented on the video are attached.
     

    Attached Files:

    adambeyoncelowe, Andy, ahimsa and 3 others like this.
  17. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    2,707
    Likes Received:
    14,716
    Anyone tweeting on this? What hashtag(s)?
     
  18. Milo

    Milo Senior Member (Voting Rights)

    Messages:
    1,131
    Likes Received:
    8,528
    Did anybody watch?
     
    Dolphin, sebaaa and Kitty like this.
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,374
    Likes Received:
    44,585
    Location:
    UK
    You couldn't just watch, you had to pay to register
     
  20. Dakota15

    Dakota15 Established Member

    Messages:
    23
    Likes Received:
    119
    ..did anyone pay to register/watch then? Just curious.
     

Share This Page