Discussion in 'Advocacy Projects and Campaigns' started by Andy, Jan 17, 2021.
A thread for article, events and anything else related to ME Awareness Day/Week/Month 2021.
Will still coincide with the start of DecodeME? I realise the ME awareness events take place worldwide, but in the UK it would be a good opportunity to mark the beginning of something really hopeful and positive.
Yes, DecodeME very much hopes to open recruitment early in May, as we believe that the greater awareness of ME will help raise the awareness of the study, and vice versa. However, even the best laid plans can encounter stumbling blocks, especially in a world struggling to cope with Covid, so we aren't going to guarantee it.
From ME Advocacy Network Australia,
"Bring your creativity to the fore and help shine a light on an aspect of your life, living with ME/CFS or caring for someone with ME/CFS.
Your piece can take any form you like:
Photo or photo essay
Short story (max. 500 words, may be edited for clarity)
Any other creative form you wish"
"This is our 6th anniversary of #MillionsMissing, a global movement powered by #MEAction to raise awareness and fight for recognition, education and research for people living with Myalgic Encephalomyelitis (ME) (or ME/CFS). [...]"
#MillionsMissing Gloucester (UK) will be ‘missing’ in May 2021, same as 2020
#MillionsMissing Germany has organized a postcard campaign. This year, pwME and allies will send postcards to the parliaments of the 16 federal states.
Florida House of Representatives:
very odd to find this here (on a Life coaches website):
Things to do in May
Tweet from Emerge.
"ME/CFS Awareness Week 2021 starts on Saturday 8 May! #EmergeAustralia is encouraging the #MECFS community to be seen and heard by creating a personalised missing poster and sharing it on social media. To make your own, click here! #MillionsMissing 12may.org"
As the tweet says, the website, https://12may.org/, allows you to create your own missing poster. While I applaud the effort to help pwME raise awareness, the use of this particular URL and the website not making it obviously clear that this is an Emerge project, and that all of the donation links are for Emerge only, leave me disappointed that there isn't more transparency on all of these details.
The website has emerge logos and if you click the donate link, it says the donation is for Emerge Australia and has the Emerge logo
I'm not denying any of that, but it's not enough for me, especially as I couldn't have told you what Emerge's logo was. While I appreciate that URL's are up for grabs by all, I would interpret the use of 12may.org, instead of perhaps 12may.org.au, as an attempt to appeal globally, and the very minimal Emerge 'branding' strongly suggests this as well. For any donations to then go solely to Emerge, whose work otherwise I'm very supportive of, does not sit right, unless perhaps they are planning to go international and are yet to announce that. I'm sure that many patients will be delighted with this site, but I'm just offering my views as someone outside of Emerge and Australia.
'Patient Voices' - Virtual International M.E Awareness Day Event
Award-winning ME Foggy Dog was founded by and managed by an M.E/C.F.S patient - Sally Callow. 'Hosting' this event will be challenging as Sally has limited energy. Because of her energy restrictions the event will contain a mixture of content: Sally will deliver an awareness talk, share pre-recorded interviews with fellow M.E/C.F.S patients, advocates, and charity founders from around the world, screen short films about M.E/C.F.S issues, and hold a Q & A session with attendees in the later stages of the event.
This event is for both awareness and fundraising. All proceeds (minus platform fees) will be given to Cure ME (London School of Hygiene and Tropical Medicine) for biomedical research into the disease.
#MillionsMissing Germany has released a trailer announcing International ME/CFS Day (with English subtitles):
Press release from the German Association for ME/CFS:
from an email from #MEAction
"Join us for interviews
Throughout the day on 12th May, log on to #MEAction UK or #MEAction Scotland Facebook pages to watch interviews with researchers, health professionals, authors, MPs, people with ME and carers.
We will be featuring a range of speakers such as Ronald W Davis discussing his current research projects, Janet Dafoe talking about caring for Whitney, Dr. Nina Muirhead on her training for healthcare professionals, and Professor Chris Ponting on the latest stage of Decode ME. Plus, you will hear from MPs, authors and campaigners all supporting the #MillionsMissing and sending the message that #YouAreNotAlone.
Schedule for videos to be announced shortly."
#MillionsMissing Global event 12th May
OMF thread with details of their May Momentum activities here:
From an email:
The blog is linked and would be best discussed on the DecodeME thread:
The Norwegian ME Association invites to a webinar with prof. Karl Johan Tronstad from the University in Bergen May 12th at 13.00.
Prof. Tronstad is part the ME research team in Bergen with Fluge/Mella. He will be talking about research into energy metabolism, and how it can contribute to more knowledge about disease mechanisms in ME and to a biomarker for the disease.
Duration: 1 hour
I think the talk will be made public afterwards.
Link to registration:
Separate names with a comma.