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USA: News from #MEAction

Discussion in 'News from organisations' started by ahimsa, Nov 9, 2017.

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Page 7 of 9
  1. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    Email from #MEAction about creative writing workshops for people with ME/CFS or Long Covid:
    The deadline to apply is Monday, October 23, 2023.
    Space is limited, and only 25 slots are available.    ​

    Full email here:

    https://mailchi.mp/meaction/meactio...s-guild-initiative-to-offer-writers-workshops

    EDIT: Also announced on their website here:

    https://www.meaction.net/2023/10/11...-guild-initiative-to-offer-writers-workshops/
     
    Last edited: Oct 14, 2023
    ahimsa, Oct 14, 2023
    #121
    Dolphin and Hutan like this.
  2. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    Email from #MEAction about their Fall Virtual Artist Salon:
    Full email here:

    https://mailchi.mp/meaction/meactions-fall-virtual-artist-salon
     
    ahimsa, Oct 14, 2023
    #122
    Dolphin and Hutan like this.
  3. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,626
    Location:
    UK
    Sly Saint, Oct 15, 2023
    #123
    Hutan, MEMarge, cfsandmore and 4 others like this.
  4. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    #MEAction and Mayo Clinic have been working together for a while. I believe this document (and a CME course based on it, web page, etc) was funded by a grant.

    See this news item from September 2022:

    https://www.meaction.net/2022/09/22/mayo-grant/

    I believe the idea is that this new Concise Review for Clinicians will be used at the actual Mayo Clinic. Well, at least at the Rochester, Minnesota location. I'm not sure how all the different Mayo Clinic locations are managed.

    Please let me know if I've misunderstood something! (which happens a lot:))
     
    ahimsa, Oct 15, 2023
    #124
    RedFox, Hutan, Trish and 1 other person like this.
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    ahimsa, Oct 28, 2023
    #125
    Binkie4, Dolphin and Trish like this.
  6. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    The next #MEAction Partner/Caregiver Support Call is scheduled for Sunday, November 5, 3 - 4 PM Eastern Time / 12 - 1 PM Pacific Time. (on Zoom)

    https://www.meaction.net/event/me-partner-caregivers-support-group/2023-11-05/

    Find the time in your time zone here:

    https://www.timeanddate.com/worldclock/fixedtime.html?msg=#MEAction+Partner+Caregiver+Support+Call+(Zoom)&iso=20231105T15&p1=179&ah=1
     
    Last edited: Nov 4, 2023
    ahimsa, Nov 4, 2023
    #126
    Trish, Hutan and Dolphin like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,317
    https://www.meaction.net/event/me-caregiver-support-call/2023-11-18/

    CAREGIVER SUPPORT CALL ( FOR CAREGIVERS OF PEOPLE WITH ME (MYLAGIC ENCEPHALOMEYLITIS), LONG COVID AND ASSOCIATED CONDITIONS)

    NOVEMBER 18 @ 3:30 PM – 4:30 PM AMERICA/NEW_YORK/8:30 PM in Great Britain & Ireland

    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...R+SUPPORT+CALL+&iso=20231118T1530&p1=179&ah=1

    We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to join our calls to connect with and support each other.
     
    Dolphin, Nov 9, 2023
    #127
    Binkie4, ahimsa and Trish like this.
  8. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    Announcement from #MEAction:

    CANARY CORPS – New Grassroots Program Coming Soon

    https://www.meaction.net/2023/11/06/canary-corps-new-grassroots-program-coming-soon/
    The name comes from the metaphor of being a canary in a coal mine.
    There's a community education workshop on December 6th at 4 pm Eastern Time.

    Details here: https://www.meaction.net/event/canary-corps-community-education-workshop/
     
    ahimsa, Nov 11, 2023
    #128
    NelliePledge, MEMarge, Braganca and 5 others like this.
  9. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    Reminder of a recurring event hosted by #MEAction every Thursday:

    Pillow Writers: An ME/CFS Writing Group

    https://www.meaction.net/event/pillowwriters/2023-11-16/
    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...iting+Group&iso=20231116T11&p1=137&ah=1&am=30
     
    ahimsa, Nov 11, 2023
    #129
    Trish and Dolphin like this.
  10. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    "Check out the Updated, Expanded, Revamped MEpedia!"

    https://www.meaction.net/2023/11/15/check-out-the-updated-expanded-revamped-mepedia/
     
    Last edited: Nov 15, 2023
    ahimsa, Nov 15, 2023
    #130
    MEMarge, bobbler, cfsandmore and 2 others like this.
  11. LJord

    LJord Senior Member (Voting Rights)

    Messages:
    182
    I am new here though not new to this disease. I checked out the entry for Functional Neurologic Disorder (because it has been an issue for me to get taken seriously etc.) It was glowing. I sent an e-mail asking if this was wise to leave as is given that people are being harmed by this diagnosis and the treatment recommendations (GET and therapy). The response was that I was welcome to edit per policies. I’m not that well but is it wise to have something advertised for ME/CFS people that recommends these therapies? I will grant you I don’t believe that this is a legitimate illness but still…..
     
    LJord, Nov 21, 2023
    #131
    bobbler, Sean, cfsandmore and 1 other person like this.
  12. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    I am not on the staff at #MEAction, and I'm no expert on MEpedia (or on any other Wiki), but here are my two cents.

    Crowdsourced resources like wikis are only as good as the information that's provided by the editors. Editors are usually volunteers working on an ad hoc basis.

    There's always a problem with lack of ownership for these things. When an issue is found, whether it's on Wikipedia or MEpedia, there's usually no way to report that to a central editing team who will look into it and decide what changes should be made.

    I don't think there's an #MEAction project leader who manages a team of volunteers and/or prioritizes what additions or error corrections should be done in MEpedia. But I could be wrong!

    For example, if you look at the Functional movement disorder entry (Functional Neurologic Disorder appears to redirect to this entry) the first thing listed for this this entry is that it needs to be rewritten.

    And the discussion section says:
    It would be great if MEAction to created a volunteer team to manage the editing side of MEpedia. But as far as I can tell the grant money was used for updated software, new hosting platform, translations, accessibility, etc.
     
    ahimsa, Nov 21, 2023
    #132
    Peter Trewhitt, MEMarge, bobbler and 1 other person like this.
  13. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    I occasionally use MEPedia to look up bits of historical information and references listed. I would never use MEPedia to find out current medical information, as so much of it is very poor quality. My preference would be for MEPedia to stick to what it does well, which is provide a handy source of references on some historical stuff and general information like names and links for current researchers and details of advocacy and research organisations. Personally I think they should remove all the sections on current medical topics.
     
    Trish, Nov 21, 2023
    #133
    Peter Trewhitt, obeat, SNT Gatchaman and 3 others like this.
  14. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    4,874
    Location:
    Aotearoa New Zealand
    That entry was added by user:Notjusttired in 2018a and 2018b.

    If the people editing with good intentions are doing so credulously and non-critically, that would be a good idea.
     
    SNT Gatchaman, Nov 25, 2023
    #134
    Peter Trewhitt and Trish like this.
  15. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    A Year of Exciting Medical Education Achievements

    https://www.meaction.net/2023/11/29/a-year-of-exciting-medical-education-achievements/
    Just a couple of quotes, lots more info at the link above.
     
    ahimsa, Dec 1, 2023
    #135
    Kitty, RedFox, Kalliope and 5 others like this.
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

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    5,317
    Dolphin, Dec 4, 2023
    #136
    Kitty, MEMarge, ahimsa and 3 others like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    53,396
    Location:
    UK
    https://millionsmissing.meaction.net/mm24/?mc_cid=3954d434a7&mc_eid=83ddbd3a71

    WE ARE THRILLED TO ANNOUNCE OUR VISION FOR #MILLIONSMISSING 2024!
    This year, we are launching a national campaign to educate hospital systems and medical schools about ME/CFS by encouraging medical schools to Teach ME, and major hospitals to Treat ME. Our goal is to hold in-person events at these institutions the week of May 3rd to May 12th.

    Our goal is to offer solutions and ultimately build partnerships with these hospital systems to create change. The tenor of this #MillionMissing will be geared towards forging new alliances and working together to transform healthcare for people with ME. This is not a protest against hospital systems or medical schools.

    We encourage cities around the world to join #MEAction in creating their own #TeachMETreatME events. We also recognize that you understand your local healthcare systems best, and support doing what is right for you and your community.

    WE NEED YOU to help pull off a campaign at this scale! Like so many #MillionsMissings before, our success rests on our collective shoulders.
     
    Trish, Dec 14, 2023
    #137
    MEMarge, Kitty, Kalliope and 5 others like this.
  18. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    From MEAction:

    Sunday, January 7 - Caregiver Support Call
    12 noon Pacific Time / 3 PM Eastern Time

    https://www.meaction.net/event/me-partner-caregivers-support-group/2024-01-07/

    "The Partner Caregivers Support Group invites caregivers who are spouses, partners, or significant others of people with ME/CFS or Long COVID (and associated conditions) to join us to connect, share, and support each other."

    Zoom meeting is held the first Sunday of each month.

    Find the time in your time zone here:
    https://www.timeanddate.com/worldclock/fixedtime.html?msg=#MEAction+Partner/Caregiver+Support+Call&iso=20240107T15&p1=179&ah=1
     
    Last edited: Jan 6, 2024
    ahimsa, Jan 6, 2024
    #138
    MEMarge, Kitty, Peter Trewhitt and 1 other person like this.
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,317
    Sunday, January 20
    CAREGIVER SUPPORT CALL ( for caregivers of people with ME (myalgic encephalomyelitis), Long COVID and associated conditions)

    https://www.meaction.net/event/me-caregiver-support-call/2024-01-20/

    3:30pm ET/8:30 pm in Great Britain & Ireland
    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...R+SUPPORT+CALL&iso=20240120T1530&p1=2416&ah=1

    We welcome caregivers of people with chronic diseases such as myalgic encephalomyelitis (ME), Long COVID, MCAS, etc. to join our calls to connect with and support each other. Please join us for the third Saturday of each month at 12:30 pm PT / 3:30 pm ET for our ME/LC (and associated conditions) Caregiver Support Call.

     
    Last edited: Jan 7, 2024
    Dolphin, Jan 7, 2024
    #139
    Peter Trewhitt likes this.
  20. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,692
    Location:
    Oregon, USA
    From an #MEAction email:
    Link to full email, which includes links to RSVP for this meeting or to sign up as a volunteer:

    https://mailchi.mp/meaction/join-our-millionsmissing-info-session-on-jan-20th

    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...rmational+session&iso=20240120T11&p1=224&ah=1
     
    Last edited: Jan 13, 2024
    ahimsa, Jan 13, 2024
    #140
    Dolphin, Fizzlou, Sean and 1 other person like this.
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