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ME Awareness Day / Week / Month, May 2022

Discussion in 'Advocacy Projects and Campaigns' started by Andy, Feb 28, 2022.

  1. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
    464
    Dr Wiles is one of our top microbiologists (is from the UK and was voted “New Zealander of the Year” last year) due to her expertise and science writing to inform the public on covid and adviser to the NZ government’s covid response. So good advocacy.

    She seems to have got mixed up with her ME history from my local experience. It was first known as Tapanui Flu here and then ME after Ramsay, medical doctors called it ME or post infectious syndrome and was coded as a medical disorder using ICD. The US called it CFS. Local ME expert/GP (and was training at the Royal Free during it’s outbreak) called it ME but as she became more aligned with US research/clinicians, called it ME or CFS (but more CFS as time went by, many people were referred to her for diagnosis and so only call their illness CFS). I have a ME diagnosis (by a physician) when diagnosed in early 90’s but the public are still clueless unless you say “chronic fatigue”. (Local psychiatrists called it many things using the DSM, a US coding system for psychiatric disorders which differs from ICD the UK uses)
     
    RoseE, Lilas, Ravn and 6 others like this.
  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    Join Joan and show your support this World ME Day
    https://www.newrydemocrat.com/news/...nd-show-your-support-this-world-me-day-24730/
     
  3. Forestvon

    Forestvon Senior Member (Voting Rights)

    Messages:
    405
    Thank you. I keep seeing where it could have been better and we had to finish quickly as her battery was low.

    It certainly wasnt my idea to put the NHS reference in - high time they included PEM, pacing and faulty energy system.
     
  4. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
  5. hibiscuswahine

    hibiscuswahine Senior Member (Voting Rights)

    Messages:
    464
    RoseE, Joan Crawford, Ravn and 3 others like this.
  6. mango

    mango Senior Member (Voting Rights)

    Messages:
    2,505
  7. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,044
    Location:
    Aotearoa New Zealand
    ANZMES (supported by other NZ ME organisations) had a video World ME Day event featuring talks by Prof Tate, Dr Vallings and Dr Brooks. These have been recorded and are available here:

    http://anzmes.org.nz/learnfrommenz/
     
    alktipping, RoseE, Trish and 2 others like this.
  8. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,263
  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    UK Parliament
    https://edm.parliament.uk/early-day-motion/59735/me-awareness-day-2022
     
    Forestvon, hibiscuswahine and Trish like this.
  10. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    9,574
    Location:
    UK
    hibiscuswahine and Trish like this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    The World ME Alliance article gives a link to a website which I can't open:
    Code:
    https://www.worldmeday.org/
    Can anyone else open it?

    Edit: I found a different link via the Solve ME website:

    http://worldmeday.org

    When I clicked on that it took me to:

    https://worldmealliance.org/worldmeday/
     
    alktipping likes this.
  12. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,263
  13. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    alktipping and Trish like this.
  14. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    13,145
    Location:
    UK West Midlands
    I know we still have a long way to go. However for the first time I have felt confident enough to have tagged in my GP surgery into a Facebook post about International ME day and I have written to my CCG about the NiCe implementation statement and asked what their plans are.
     
  15. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,239
    Location:
    Norway
  16. Dakota15

    Dakota15 Senior Member (Voting Rights)

    Messages:
    264
    Moved post

    City of Minneapolis, May 12, 2022 City Council


    Just sharing that Minneapolis, Minnesota highlighted ME & Long COVID on World ME Day on May 12th with a City Resolution with a hearing. The timeframe is from the start - until about 9 minutes.
     
    Last edited by a moderator: May 14, 2022
  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    Messages:
    2,199
     
  18. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,044
    Location:
    Aotearoa New Zealand
    A day late but hey, who's counting
    More at link.

    https://www.scoop.co.nz/stories/GE2...ut-me-world-me-day-asks-you-to-learn-more.htm
     
  19. Andy

    Andy Committee Member

    Messages:
    21,814
    Location:
    Hampshire, UK
    From a Solve email, https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

    "Last week we hosted our first Solve M.E. Advocacy Café Chat of Advocacy Month 2022. Solve M.E.’s Vice President of Advocacy and Engagement Emily Taylor was joined by special guests Cynthia Adinig, Sarah Ramey, and Sarah Tompkins for a conversation about sharing our stories to advocate for change.

    Watch the recording here.

    Solve M.E. Advocacy Café Chats happen every Friday during Advocacy Month at 12 pm PT.

    The next Café Chat takes place on Friday, May 20, and registration is not required.

    Just click this link to enter: https://go.solvecfs.org/e/192652/4y...h=cBadVlgoUgPPpJZzlvV9W3Le6Njc0PB89z_M86Tlg2A

    Click here for a full calendar of advocacy events.


    Take Action Online Tuesday, May 18

    Meetings with Senate representatives take place on Tuesday, May 18. Registration for those meetings is now closed, but you can show solidarity by posting on social media, emailing, and calling your elected officials through our Action Center!"
     
    ahimsa and alktipping like this.
  20. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,239
    Location:
    Norway
    Patient advocate Sissel Sunde has been fundraising to buy copies of an interview book about ME for May 2022. The fundraising was a success, and she was able to buy and send the book together with a letter to 82 recipients, including to the Royal Family, politicians, the Norwegian Medical Association and many more.

    Two MPs agreed to meet her together with four other patient advocates on May 12th in Oslo at the Parliament. They got 1.5 hours in total (much longer than originally planned) and it seems they were able to get across lots of information about ME and the situation for the patient group.

    Sissel Sunde has written a blog post with a summary and with some great pictures:

    Fra Spleis til møte på Stortinget
    Google translation: from fundraising to a meeting in the Parliament
     
    mango, alktipping, MEMarge and 3 others like this.

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