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

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.

 

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).
https://twitter.com/user/status/1259775190202044416

 

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)

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

 

Press release by the Swedish ME Association:

RME: Miljontals i ofrivillig karantän redan innan corona - ME-sjuka världen över har varit bundna till hemmet i åratal
("Millions in involuntary quarantine even before corona - ME sufferers worldwide have been housebound for years")

https://www.mynewsdesk.com/se/press...ar-varit-bundna-till-hemmet-i-aaratal-2997853

 

Sheffield ME group warning to COVID-19 patients

full article:
https://www.sheffieldtelegraph.co.u...ld-me-group-warning-covid-19-patients-2846732

 

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/

 

Seems to have been deleted or unpublished.

 

hmm yes; odd.

here's another one from Scottish Daily mail

https://www.pressreader.com/uk/scottish-daily-mail/20200511/281565177938219

eta:

it is back there now
https://www.heraldscotland.com/news...d-charity-warns-covid-will-cause-spike-cases/

 

Code:

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

https://twitter.com/user/status/1259891020596051972

 

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.

 

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

https://twitter.com/user/status/1259898565939335168

 

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/

 

To get something to trend on Twitter, ideally you want something that is rarely otherwise used. I recall that #MEAwarenessDay trended another year.

 

Post copied from the New Zealand thread

From MECFS Canterbury for ME/CFS Awareness Day...

• https://www.youtube.com/watch?v=vuRrh7NiknQ

  
  

____________________________
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/

 

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

 

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

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

 

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.

 

Austria:

Mirabell Palace in blue light sensitized to rare diseases

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

 

From the European ME Coalition (EMEC):
https://twitter.com/user/status/1260176579747033088