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USA: News from #MEAction

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

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Page 5 of 10
  1. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    502

    The language in the clinician's guide is geared towards those who care for adults.
    For clinicians who care for children please refer them to the pediatric pacing guide (https://www.meaction.net/wp-content/uploads/2022/08/Pediatric-Guide-to-Pacing-2.pdf) .
     
    Denise, Mar 4, 2023
    #81
    Amw66, Peter Trewhitt, Trish and 1 other person like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Mar 5, 2023
    #82
    ahimsa, Peter Trewhitt, Trish and 2 others like this.
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,646
    Location:
    Norway
    I don't think this has been shared yet? But this was an interesting conversation between Jamie Seltzer, Director of Science and Medical Outreach at #MEAction and David tuller.

    From the YouTube description:
    We spoke a couple of weeks ago about her background, her work, the debate around "functional" disorders, and related issues--although we didn't get to many of the issues on my list.

    https://www.youtube.com/watch?v=PJssYHeaf6c


     
    Kalliope, Mar 8, 2023
    #83
    ahimsa, Amw66, Ariel and 2 others like this.
  4. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    MEAction, along with several other patient organizations, have written to the DEA (Drug Enforcement Administration) to oppose a new rule restricting telemedicine appointments when prescribing certain pain medicines.
    ===

    ME & Long COVID patients need telemedicine prescribing flexibility

    https://www.meaction.net/2023/03/31/dea-telemedicine-prescribing-rule/
     
    ahimsa, Apr 1, 2023
    #84
    Amw66, shak8, Dolphin and 4 others like this.
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Saturday, April 15 ME CAREGIVER SUPPORT CALL
    https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/

    3:30 PM EDT (US)/8:30 PM in Great Britain & Ireland
    Find the time in your time zone here:
    https://www.meaction.net/event/me-caregiver-support-call/2023-04-15/

    =======
    Please join us for the third Saturday of each month at 12:30 pm PT / 3:30 pm ET for our ME Caregiver Support Call. If you would like to be added to our email list and receive meeting info and updates, please email caregiver [@] meaction.net
    Please use ME Caregiver Email List in the subject line.
    Join our Facebook group for more discussion

    Join the video call: https://bluejeans.com/371271408

    Join by phone: +1.408.317.9253 (US (Primary, San Jose))
    (see all country phone numbers here – https://www.bluejeans.com/numbers)
    Enter the meeting ID 371 271 408 followed by #
     
    Dolphin, Apr 2, 2023
    #85
    ahimsa and Peter Trewhitt like this.
  6. Denise

    Denise Senior Member (Voting Rights)

    Messages:
    502

    The calls are open to all caregivers. Caregivers of PwME, Long COVID and associated chronic conditions are welcome.
     
    Denise, Apr 2, 2023
    #86
    Wilhelmina Jenkins, Amw66, ahimsa and 3 others like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Apr 7, 2023
    #87
    Hutan, Amw66 and Peter Trewhitt like this.
  8. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    From an #MEAction email:

    Millions Missing 2023: Watch Livestream of Press Conference

    May 12, 2023
    11:00 am to 12:00 pm Pacific Time
    The email is here (has more info on how to get involved):


    A similar announcement is also on their website:

    EDIT: To save folks some time/energy I thought I'd quote the Activism From Home section of the website.
     
    Last edited: Apr 15, 2023
    ahimsa, Apr 14, 2023
    #88
    Hutan, Fizzlou, Wilhelmina Jenkins and 6 others like this.
  9. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    MEAction is asking for folks to decorate pillowcases to be used as part of the Millions Missing 2023 art installation -- rows of cots with pillowcases attached -- on May 12:

    https://millionsmissing.meaction.net/pillowcase-decoration-project/

    More information at the link, but here are some highlights:
     
    ahimsa, Apr 18, 2023
    #89
    Hutan, Wilhelmina Jenkins, Kalliope and 3 others like this.
  10. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    Here's the latest twitter post by #MEAction about their pillowcase decoration project:
    They're asking folks to use the hashtags #MillionsMissing and #PillowStory when posting images of pillowcases.

    Several folks have posted that Zazzle is a good option for folks with limited energy:

    https://www.zazzle.com/create_your_own_single_standard_size_pillowcase-256224603975274551

    You can design the pillowcase online and then have it shipped directly to the address listed by #MEAction.

    I've listed two examples below:
    And here are some hand drawn examples:
    EDIT: another good one
     
    Last edited: Apr 29, 2023
    ahimsa, Apr 29, 2023
    #90
    RedFox, Hutan, Peter Trewhitt and 2 others like this.
  11. Dakota15

    Dakota15 Senior Member (Voting Rights)

    Messages:
    849

    Sharing, being time relevant, from #MEAction today, @SunnyK (mods, feel free to move if best fit elsewhere):

    "#MEAction & Mayo ME/CFS Algorithm is Live!''

    'Last fall, #MEAction & Mayo Clinic applied for a grant together from the Society to Improve Diagnosis in Medicine to transform the diagnostic & treatment process at Mayo Clinic Rochester for people with ME/CFS!'

    Our Director of Scientific and Medical Outreach, Jaime Seltzer, and Dr. Stephanie Grach and Dr. Ravindra Ganesh of Mayo Clinic have been working hard ever since and have our first major announcement!'

    As part of our grant-funded work, we built a diagnostic and treatment algorithm for people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), for Mayo’s AskMayoExpert. And it is now live!'

    https://www.meaction.net/2023/04/26/mecfs-algorithm-is-live
     
    Last edited by a moderator: May 6, 2023
    Dakota15, May 2, 2023
    #91
    Wilhelmina Jenkins, ahimsa, Hutan and 3 others like this.
  12. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, May 7, 2023
    #92
    ahimsa, Wilhelmina Jenkins and Hutan like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Saturday, May 20:
    Caregiver Support Call (for caregivers of people with ME (Mylagic Encephalomeylitis), Long Covid and Associated Conditions)

    3:30 PM EDT/8:30 PM Great Britain & Ireland
    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...ER+SUPPORT+CALL&iso=20230520T1530&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.
    https://www.meaction.net/event/me-caregiver-support-call/2023-05-20/
     
    Dolphin, May 7, 2023
    #93
    Trish, Hutan, ahimsa and 2 others like this.
  14. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Thursday June 15 #MEACTION GEORGIA SUPPORT CALL
    https://www.meaction.net/event/meaction-georgia/2023-06-15/

    People from around the world are welcome.

    1 PM EDT/6 PM in Great Britain & Ireland
    Find the time in your time zone here:
    https://www.timeanddate.com/worldcl...RGIA+SUPPORT+CALL+&iso=20230615T13&p1=25&ah=1

    Join #MEAction GA the 3rd Thursday of the month at 1pm EST for our
    monthly support call. All pw/ME are welcome and no previous attendance
    is needed. Topics will vary from month to month and no preparation is
    required. Come as you are for this virtual meeting!

    Please remember to mute yourself when not speaking to avoid background
    interference for those of us with sensitive ears. To do this, tap the
    mic icon or press *4 to mute and unmute from your phone.

    *Topic:* MEAction Georgia Support Call
    *Time:* 1pm EST

    ------------------------------------------------------------------------

    *Follow the link below to join via computer:*

    Meeting URL

    https://bluejeans.com/343466060 <https://bluejeans.com/343466060>

    Meeting ID

    343466060

     
    Dolphin, Jun 4, 2023
    #94
  15. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Jun 4, 2023
    #95
    Peter Trewhitt likes this.
  16. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    Latest email from #MEAction, subject line: "Why We Keep Telling the Story of ME to the Press"

    https://mailchi.mp/meaction/nih-comes-up-short-once-again-2270577

    This mail discusses work #MEAction has done to get news coverage with accurate information about ME/CFS and has links to quite a few stories. There's a special shout-out to their New Hampshire chapter for pitching a story that made the front page of the Boston Globe.

    Also includes a request for donations.

    Here's a short extract (with some extra line breaks added):
     
    ahimsa, Jun 10, 2023
    #96
    Binkie4, Hutan, Peter Trewhitt and 4 others like this.
  17. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    Article written by Ben HsuBorger:
    ”Bed activism” at the Washington Monument & A Politics of Care

    https://www.meaction.net/2023/06/30/bed-activism-at-the-washington-monument-a-politics-of-care/

     
    ahimsa, Jul 1, 2023
    #97
    Binkie4, Hutan, Peter Trewhitt and 2 others like this.
  18. ahimsa

    ahimsa Senior Member (Voting Rights)

    Messages:
    2,796
    Location:
    Oregon, USA
    I thought I'd post a reminder that there's a calendar for MEAction events on their website:

    https://www.meaction.net/act-events/

    This might be useful for those who used to check the MEAction twitter account. As of yesterday you must be logged in to see tweets which means access is blocked for anyone who does not have a twitter account.

    That twitter restriction is supposed to be temporary, but who knows?
     
    ahimsa, Jul 1, 2023
    #98
    Wilhelmina Jenkins, Dolphin, Hutan and 2 others like this.
  19. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Last edited: Jul 8, 2023
    Dolphin, Jul 3, 2023
    #99
    Binkie4, Hutan, ahimsa and 2 others like this.
  20. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    5,949
    Dolphin, Jul 7, 2023
    #100
    ahimsa, Hutan, Binkie4 and 1 other person like this.
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