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

ME/CFS Skeptic

ME/CFS Skeptic

Senior Member (Voting Rights)
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.
 
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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).
 
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)
 
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Sheffield ME group warning to COVID-19 patients
Monday, 11th May 2020, 9:00 am

They are horrified that graded exercise therapy, the same treatment that has left them housebound for years, could be offered to patients post-COVID unless action is taken now.

A six-metre-long card designed by 26-year-old Sian Leary from Sheffield, who herself has been mostly housebound with ME for more than seven years, contained 1,200 messages from 2,006 people.

They describe how graded exercise had made them worse and ask the National Institute for Health and Care Excellence (NICE) to take action now to stop graded exercise therapy being offered to more people experiencing post-viral ME.
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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
CAMPAIGNERS have called on NHS Scotland to ban an exercise treatment which encourages patients with chronic fatigue to "push through" their symptoms, saying it has left some in a wheelchair.

Charity, ME Action Scotland, is pushing for the change ahead of what it fears will be a surge in cases of post-viral illness in the wake of the coronavirus pandemic.

More than 21,000 Scots already suffer from Myalgic Encephalomyelitis (ME), also known a chronic fatigue syndrome.
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article here
https://www.heraldscotland.com/news...d-charity-warns-covid-will-cause-spike-cases/
 
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Sly Saint said:
hmm yes; odd.

here's another one from Scottish Daily mail
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https://www.pressreader.com/uk/scottish-daily-mail/20200511/281565177938219
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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.
 
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/
 
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/
 
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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
 
Australia:
Griffith Bridge and Ian O’Connor Building light up for ME/CFS Awareness Day


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

Griffith University’s iconic bridge across the Smith Street Motorway and the Ian O’Connor Building will be illuminated in blue to mark International ME/CFS Awareness Day today.

“Griffith University is the world’s foremost research leader in understanding the pathology of ME/CFS,’’ said Professor Sonya Marshall-Gradisnik, Scientific Director, from the National Centre for Neuroimmunology and Emerging Diseases (NCNED).

GriffithUni-29-300x200.jpg

“The symbolism of the Griffith University bridge being illuminated demonstrates the bridging of knowledge by NCNED researchers to the Ian O’Connor Building where the research takes place.”

NCNED aims to identify the pathology of CFS/ME, develop a suitable blood test and identify candidate drugs for possible treatments.
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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
You might think it’s odd that two diseases like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) share the same International Awareness Day, observed on May 12 every year. But the fact is, ME/CFS and FM have too much in common, and usually co-occur.

What they have in common
According to a study published in QJM: An International Journal of Medicine in 2013, both ME/CFS and FM are “medically unexplained illnesses, predominantly of women, characterized by disabling fatigue and by widespread pain with tenderness, respectively.” Since these diseases often co-occur and have a similar psychogenic process of symptom amplification (the psychological tendency to misconstrue the significance of normal physical sensations like pain or fatigue), many researchers and medical professionals consider them to be a single syndrome instead of two separate ones.
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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
Chronic fatigue syndrome is a disease largely unknown to the public. Internationally abbreviated as ME / CFS ("Myalgic Encephalomyelitis - Chronic Fatigue Syndrome"), patients with chronic multi-system disease mostly suffer from severe fatigue and weakness conditions that last for at least six months. There are also flu-like symptoms, sore throat, muscle and joint pain and infections. In order to raise awareness of this disease on the international ME / CFS day of action, May 12, Mirabell Palace will be illuminated in blue this evening.

“This disease is difficult to grasp for many people. Chronic fatigue syndrome means a massive cut in their lives for those affected. Permanent exhaustion and pain force many to completely withdraw from public life. That is precisely why it is important to me to provide information about this as yet little-researched disease and to give those affected a voice, ”explains City Councilor Martina Berthold.

The Austrian Society for ME / CFS estimates that there are approximately 25,000 patients across Austria. In some countries (e.g. USA, Canada, Australia), separate contact points have been set up in clinics and research into ME / CFS is supported with financial resources. Austria, according to the ME / CFS aid, is one of the few western countries where this is not yet the case.

In May 2020, blue lighting will make the most diverse
Places of interest set a sign for ME / CFS sufferers across Austria: the Wiener Riesenrad, the Graz clock tower, the Lindwurm in Klagenfurt, the Goldene Dachl in Innsbruck and other landmarks take part in the campaign.
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https://www.stadt-salzburg.at/inter...s_mirabell_in_blauem_licht_sensibi_488193.htm
 
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