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USA: News from the Bateman Horne Center

Discussion in 'News from organisations' started by ahimsa, Mar 4, 2022.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,203

    Bateman Horne Center
    ·

    BHC is making research participant data available to ME/CFS and long COVID researchers around the world by establishing Global Unique Identifiers (GUIDs).

    "Each time you participate in research, you create a pearl of knowledge. GUIDs allow us to string pearls together, safely and securely, into one long strand that may help reveal the disease mechanisms of ME/CFS and long COVID."

    Read Dr. Vernon's blog about GUIDs and how participating in research advances the science for #MECFS and #LongCOVID.
    http://bit.ly/3uzJ6x4
     
    Peter Trewhitt, shak8, ahimsa and 3 others like this.
  2. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,245
    Location:
    Pennsylvania
    Sounds like they're hashing your personal info
     
  3. Trish

    Trish Moderator Staff Member

    Messages:
    52,218
    Location:
    UK
    Can you explain what hashing means in this context?
     
    RedFox, Lilas and NelliePledge like this.
  4. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,421
    Location:
    Canada
    No need for that. GUIDs are just very large numbers or strings that can be assumed to be unique simply because they are so large that the same sequence is unlikely to come up more than once in the entire lifetime of the universe.

    Very common in information sciences.
     
    Ariel likes this.
  5. RedFox

    RedFox Senior Member (Voting Rights)

    Messages:
    1,245
    Location:
    Pennsylvania
    A hash is when you take a bunch of data (could be text, numbers, a large computer file) and you run it through an algorithm that "scrambles" it to create a random number. The number you get will totally change if the data changes even slightly. Which means you can't tell what the input to the hash was by just looking at it. You can thus compare the hashes of things to see if they're the same, without knowing the data that went into them. Wikipedia has a rather technical overview.
     
    Peter Trewhitt and Trish like this.
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Tuesday, January 17

    Free, professionally-facilitated online support group

    https://batemanhornecenter.org/event/online-support-group-40/

    13:00 MST/20:00 in Great Britain & Ireland

    Find the time in your time zone here
    https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20230117T13&p1=220&ah=1

    Topic: Body and Self Image

    Support Group Format

    The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour.

    Both of the monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

    These sessions are led by Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness. Advance Registration Required.
     
    ahimsa, Trish and Peter Trewhitt like this.
  8. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Free professionally-facilitated online support group

    https://batemanhornecenter.org/event/online-support-group-41/

    Tuesday, February 14
    1PM MST/8 PM in Great Britain & Ireland

    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...ine+Support+Group&iso=20230214T13&p1=220&ah=1

    Topic: Practical Strategies for Talking to People Who Don’t Understand
    Support Group Format

    The first 30-minutes will focus on a predetermined topic followed by a
    general discussion for the last half of the hour. Both of the monthly
    support groups are designed to include people with ME/CFS, FM, Long
    COVID, and co-existing conditions. We also welcome supporters and
    loved ones.

    These sessions are led by Meredith Mehner, LCSW, who has personal
    experience navigating life while living with a complex chronic
    illness.

     
    Sean, ahimsa, RedFox and 2 others like this.
  9. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,634
    Location:
    Oregon, USA
    New blog entry from Bateman Horne Center:

    News Release: Microbiome Disturbances in ME/CFS

    https://batemanhornecenter.org/news...-may-point-to-biomarker-and-treatment-trials/

     
    alktipping, Trish and Peter Trewhitt like this.
  10. Trish

    Trish Moderator Staff Member

    Messages:
    52,218
    Location:
    UK
    alktipping, Peter Trewhitt and ahimsa like this.
  11. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Free, professionally-facilitated online support group meeting
    https://batemanhornecenter.org/event/online-support-group-42/

    Tuesday, February 21
    1 PM MST/8 PM Great Britain & Ireland

    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...ort+group+meeting&iso=20230221T13&p1=220&ah=1

    Topic: Spirituality and Hope

    Support Group Format

    The first 30-minutes will focus on a predetermined topic followed by a
    general discussion for the last half of the hour. Both of the monthly
    support groups are designed to include people with ME/CFS, FM, Long
    COVID, and co-existing conditions. We also welcome supporters and
    loved ones.

    These sessions are led by Meredith Mehner, LCSW, who has personal
    experience navigating life while living with a complex chronic
    illness.
     
    Peter Trewhitt and RedFox like this.
  12. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,634
    Location:
    Oregon, USA
    New blog entry from Bateman Horne Center, posted Feb. 9:

    Potential Targets for ME/CFS Clinical Trials

    https://batemanhornecenter.org/potential-targets-for-me-cfs-clinical-trials/

     
    Trish, Sean, RedFox and 2 others like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Tuesday, March 14 free, professionally-facilitated online support group

    https://batemanhornecenter.org/event/online-support-group-43/

    1PM MDT/7PM Great Britain & Ireland

    Find the time in your time zone here
    https://www.timeanddate.com/worldcl...ne+support+group&iso=20230314T13&p1=220&ah=13

    Blurb:
    Topic: What’s Worth Your Spoons and Finding Your Baseline
    Support Group Format

    The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

    These sessions are led by Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.

    Advance Registration Required. Click here to register.

    Upon registration, you will receive a confirmation email containing instructions on how to join the group event. We recommend attendees test the link, their cameras, and speakers/headphones prior to joining.
     
    Hutan, RedFox, shak8 and 2 others like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Free, professionally-facilitated online support group
    Tuesday, March 21
    Topic: Aging with Chronic Illness
    https://batemanhornecenter.org/event/online-support-group-44/

    1 PM MDT/7 PM Great Britain & Ireland

    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...ine+support+group&iso=20230321T13&p1=220&ah=1

    Blurb:
    Topic: Aging with Chronic Illness
    Support Group Format

    The first 30-minutes will focus on a predetermined topic followed by a
    general discussion for the last half of the hour. Both of the monthly
    support groups are designed to include people with ME/CFS, FM, Long
    COVID, and co-existing conditions. We also welcome supporters and
    loved ones.

    These sessions are led by Meredith Mehner, LCSW, who has personal
    experience navigating life while living with a complex chronic
    illness.

    Advance Registration Required. Click here to register.

    Upon registration, you will receive a confirmation email containing
    instructions on how to join the group event. We recommend attendees
    test the link, their cameras, and speakers/headphones prior to
    joining.

    New to our online groups, or having problems connecting to Zoom?
    Review the teleconferencing tips section of our website.
     
    Hutan, ahimsa, shak8 and 1 other person like this.
  15. mango

    mango Senior Member (Voting Rights)

    Messages:
    2,522
    Hutan and Peter Trewhitt like this.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Free, professionally-facilitated online support group
    https://batemanhornecenter.org/event/online-support-group-45/

    Tuesday, April 11. 3 PM ET/8 PM in Great Britain & Ireland

    Find the time in your time zone here https://www.timeanddate.com/worldcl...ine+support+group&iso=20230411T13&p1=220&ah=1

    Topic: Working with brain fog and cognitive processing


    Support Group Format

    The first 30-minutes will focus on a predetermined topic followed by a general discussion for the last half of the hour. Both of the monthly support groups are designed to include people with ME/CFS, FM, Long COVID, and co-existing conditions. We also welcome supporters and loved ones.

    These sessions are led by Meredith Mehner, LCSW, who has personal experience navigating life while living with a complex chronic illness.
     
    Hutan, Sean, Trish and 2 others like this.
  17. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,634
    Location:
    Oregon, USA
    Hutan, Peter Trewhitt, Sean and 3 others like this.
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Topic for this (May 16) meeting: Crash Survival and Pacing

    Free, professionally-facilitated online support group on Tuesday, May 16

    Time: 3 PM EST/8 PM in Great Britain & Ireland

    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...eman+Horne+Center&iso=20230516T13&p1=220&ah=1

    Blurb:
    Support Group Format

    The first 30-minutes will focus on a predetermined topic followed by a
    general discussion for the last half of the hour. Both of the monthly
    support groups are designed to include people with ME/CFS, FM, Long
    COVID, and co-existing conditions. We also welcome supporters and
    loved ones.

    These sessions are led by Meredith Mehner, LCSW, who has personal
    experience navigating life while living with a complex chronic
    illness.

    Advance Registration Required. Click here
    https://batemanhornecenter.org/event/online-support-group-47/ to
    register.
     
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,075
    Lunch & Learn – Virtual Event organised by the Bateman Horne Center

    Thursday May 18th

    Topic: Making Household Tasks Easier

    11:30 am MDT/6:30 PM in Great Britain & Ireland
    Find the time in your time zone here
    https://www.timeanddate.com/worldcl...earn:+May+18th+&iso=20230518T1130&p1=220&ah=2

    "These friendly sessions include a brief presentation by a participant, followed by break-out groups to discuss the "get to know you question." Individuals with ME/CFS, FM, long COVID and their supporters are invited"
    Register here. https://batemanhornecenter.zoom.us/...--qrD4qE9KHu5col_-x1r4QOS03wWin#/registration
     
    Sean, ahimsa, Trish and 4 others like this.
  20. mango

    mango Senior Member (Voting Rights)

    Messages:
    2,522
    Last edited by a moderator: Jun 6, 2023
    ahimsa, Trish, RedFox and 2 others like this.

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