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ME Awareness day / week / month and #MillionsMissing May 2020

Discussion in 'Advocacy Projects and Campaigns' started by Michiel Tack, May 11, 2020.

  1. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    I thought it might be useful to have a thread on all the wonderful initiatives for ME Awareness day/week/month 2020. Big campaigns can, of course, have their own thread but I think it would nice to have an overview of everything, including the smaller projects that are taking place all over the world.
     
    Last edited: May 11, 2020
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  2. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    In Belgium, ME/CFS patient Robin De Man made a song with his son Seppe. It commemorates the millions who have disappeared from public life and were forced to live an isolated life between four walls because of ME/CFS.

    The song is a cover of Chasing Cars by Snow Patrol with the lyrics adjusted to reflect living with ME/CFS. The video shows pictures of many patients with severe ME/CFS taken from their beds and their homes, including those who have now sadly passed away.

    Feel free to share the video with friends, family and other patients (you can't use the pictures without permission though).
     
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  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Great idea for a thread, @Michiel Tack !

    The Norwegian ME Association is organising a webinar 12th of May with prof. Ola D. Saugstad tomorrow at 14.00. The title is News about ME in the age of a pandemic (ME-nytt i en pandemitid).


    ETA: Removed a lecture by MD and researcher Anita Kåss, as it got postponed.

    ETA: Recording of lecture (In Norwegian only)
     
    Last edited: May 13, 2020
  4. Trish

    Trish Moderator Staff Member

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  5. mango

    mango Senior Member (Voting Rights)

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  6. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sheffield ME group warning to COVID-19 patients
    full article:
    https://www.sheffieldtelegraph.co.u...ld-me-group-warning-covid-19-patients-2846732
     
  7. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Copied from this thread

    Coronavirus in Scotland: Charity warns Covid will cause a spike in ME cases - as it calls for 'harmful' exercise treatment to be banned

    article here
    https://www.heraldscotland.com/news...d-charity-warns-covid-will-cause-spike-cases/
     
    Last edited by a moderator: May 11, 2020
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  8. rvallee

    rvallee Senior Member (Voting Rights)

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  9. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited: May 12, 2020
  10. Andy

    Andy Committee Member & Outreach

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    Code:
    https://www.facebook.com/mecfsbiobank/posts/3032422653471824


     
  11. rvallee

    rvallee Senior Member (Voting Rights)

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    I'm a bit wary of calling those spikes or explosions given there are 20M+ existing cases and even the worst case scenarios given current rates of infection would barely add 1% more to that. It's basically a blip, at least for now.

    I don't know how to fix that since part of the reason why this confusion exists is because of ME denial and certainly adding thousands of new cases in a single outbreak is impressive in itself but... it really continues the dismissal of what ME really is.

    It's a lot in absolute numbers, for sure. But it still erases the existing cases. Not on purpose, of course, but still annoying. Well, way more than annoying.
     
  12. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    This is interesting. ME Action UK contacted the Florence Nightingale Museum who's supporting their campaign for health equality.

     
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  13. Gecko

    Gecko Senior Member (Voting Rights)

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    Not sure anyone has posted this here yet, sooo:

    #MEAction UK have a live event from 4-6pm on Tuesday 12th (tomorrow!!)

    We've got speakers including:
    • Professor Chris Ponting
    • Stuart Murdoch from Belle and Sebastian
    • Dr Nina Muirhead
    • Carol Monaghan MP
    • David Green (Director of the Florence Nightingale Museum)
    • Catherine Hale (researcher at the chronic illness inclusion project
    • Various people with ME (including one young person who fought for access to online schooling only to be turned down - oh how things have changed now)
    • and some other faces you're sure to know!
    It will all be live on our Facebook page, and you're welcome to ask questions through the Facebook chat that we'll have someone monitoring and passing through to a team of us at #MEAction UK who will be interviewing the different speakers!

    Facebook page link is:
    www.facebook.com/MEActNetUk

    Event link: https://www.meaction.net/event/uk-millionsmissing-call/
     
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  14. Dolphin

    Dolphin Senior Member (Voting Rights)

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  15. RoseE

    RoseE Senior Member (Voting Rights)

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    Post copied from the New Zealand thread

    From MECFS Canterbury for ME/CFS Awareness Day...
    ____________________________
    Many people living with Myalgic Encephalomyelitis /Chronic Fatigue Syndrome (ME/CFS) live in permanent lockdown.

    There are currently no approved treatments for ME/CFS, which means that many people are left house or bed bound. Only 5% of people with ME/CFS recover so this situation is often permanent. In this video you will see, that for some, this has meant decades in isolation.

    We remember and acknowledge those living with ME/CFS today, on international ME/CFS Awareness Day.

    When you move out of lockdown soon - and get back into a fulfilling life with a variety of choices and activities - we ask you to remember about those that will stay in lockdown because they have ME/CFS.

    Are you able to make a difference for the people that live in lockdown with the chronic illness ME/CFS?

    ✦ If you know someone with ME/CFS, offer support, keep in touch, spread awareness.

    ✦ Donate to groups like ours that support and advocate for people with ME/CFS www.givealittle.co.nz/org/mecfs-group-canterbury-inc

    ✦ Advocate for the services that improved your life during lockdown to continue for those in permanent lockdown.
    Services like... health care consults via phone & video, options to work and study flexibly from home, online ordering, priority supermarket ordering.

    ____________________________
    For more about our organisation, please visit www.mecfscanterbury.nz.
    For other support groups in New Zealand visit www.anzmes.org.nz/what-is-me/support/
     
    Last edited by a moderator: May 12, 2020
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  16. Kalliope

    Kalliope Senior Member (Voting Rights)

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    The Norwegian ME Association donates 330 000 NOK to the Comeback Study (on fecal transplantation) and 200 000 NOK to the ME research team at Haukeland University Hospital (led by Øystein Fluge and Olav Mella) to further research into identifying ME patients who might profit from immune modulating treatment.

    Tildeling av forskningsmidler fra ME-foreningens innsamlingsaksjon 12. mai 2020
    google translation: Allocation of research funding from the ME Association's fundraising campaign 12th of May 2020
     
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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Australia:
    Griffith Bridge and Ian O’Connor Building light up for ME/CFS Awareness Day


    upload_2020-5-12_11-56-31.jpeg

    https://news.griffith.edu.au/2020/0...r-building-light-up-for-me-cfs-awareness-day/
     
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  18. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Really awful article (India):
    International Chronic Fatigue Syndrome and Fibromyalgia Awareness Day 2020: Characteristics of two similar conditions
    https://www.firstpost.com/health/in...istics-of-two-similar-conditions-8358771.html

    just the kind of 'awareness' we don't need.
     
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  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Austria:

    Mirabell Palace in blue light sensitized to rare diseases
    upload_2020-5-12_12-16-56.jpeg

    https://www.stadt-salzburg.at/inter...s_mirabell_in_blauem_licht_sensibi_488193.htm
     
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  20. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    From the European ME Coalition (EMEC):
     
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