ME Awareness Day / Week / Month, May 2021

ME Awareness Week is on its way from the 10th to the 16th of May. We peeps at the ME Association are getting ready for it with the latest version of #GoBlue4ME.

This year we’re encouraging everyone taking part to keep our celebration of Florence Nightingale’s birthday smart – and apart. There’s lots you can do to keep the party safe without occupying the same air space.

The easiest way for those who can’t get out of the house is to put up photos of yourselves and make personal statements on your social media and Facebook. Get the hashtag #GoBlue4ME trending.

Dream up something you can do in the comfort of your own home, with members of your household. We expect lots of blue hairstyles, blue faces, blue cakes, blue nails, blue buildings… through the week. Then there’s all sorts of party games that can be played.
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https://meassociation.org.uk/2021/0...e-as-a-community-but-keep-it-smart-and-apart/
 
Kitty said:
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.
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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.
 
#ME Action:
https://millionsmissing.meaction.net/?mc_cid=fef5bc52df&mc_eid=83ddbd3a71

"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). [...]"

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very odd to find this here (on a Life coaches website):

Things to do in May
10. The conversation
ME Awareness Week

Myalgic encephalomyelitis (ME, also known as chronic fatigue syndrome, CFS) is a debilitating disease of the central nervous system that can affect anyone, of any age, and can have severe long-term effects - ranging from extreme fatigue, to flu-like symptoms and generally feeling unwell. This week is about raising awareness of the condition, and what those with ME experience on a daily basis.

(11–16 May, get involved at meassociation.org.uk)
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https://happiful.com/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"

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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.
 
Andy said:
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.
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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
 
petrichor said:
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
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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.
.."

https://www.eventbrite.co.uk/e/pati...l-me-awareness-day-event-tickets-149544097421
 
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."
 
From #MEAction:
#MillionsMissing Global event 12th May
https://www.meaction.net/event/mill...al-event/?mc_cid=85989f9519&mc_eid=83ddbd3a71

Join #MEAction, ME community members, and change makers for #MillionsMissing 2021 Global Event. This virtual event, will be an opportunity for our community to gather to experience the stories of those with ME, gain insight from doctors and researchers, connect with those living with long COVID, and by galvanized to continue the fight for #MillionsMissing.

List of confirmed speakers include: Julia Miele, Jen Brea, Omar Wasow, Oved Amitay, Linda Tannenbaum, Michelle Pinedo, Terri Wilder, Jaime Seltzer, Ben HsuBorger, Dr. Jennifer Curtin, Sian Leary, Charlie Wainwright, JD Davids, Jennifer Minhas, Timbre Livesay, John Kelty, Mike VanElsakker, and many more!!
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DecodeME

From an email:

We aim to sign up lots of people to DecodeME during ME Awareness month in May – so that when we launch in September, people are ready to go.

We hope you’ll help us, if you can.

We have a lot of activity lined up, starting with this new blog:
How studies like Decode ME can lead to progress in diseases – five success stories

Also coming up this month:
  • Lots of social media action, including a hot topic every Friday, such as how people with ME are playing a critical role in DecodeME. You can follow us on Facebook, Twitter, Instagram, LinkedIn and YouTube, if you haven’t already.
  • A short, animated video asking people to sign up. We think it’s excellent and sharing this will be the single best way to help DecodeME.
  • Getting hashtag #DecodeMEstudy trending on Twitter, to boost sign-ups and awareness. We want everyone to send a tweet containing #DecodeMEstudy at 8pm GMT on ME Awareness Day itself – next Wednesday the 12th.
  • A webinar at the end of the month.
We hope there are things here you will find interesting, and things you will want to share. And thanks again for signing up for the study.
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The blog is linked and would be best discussed on the DecodeME thread:
https://www.s4me.info/threads/decodeme-uk-me-cfs-dna-study-underway.15604/page-27#post-342424
 
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.
Language: Norwegian
Duration: 1 hour

I think the talk will be made public afterwards.

Link to registration:
https://us02web.zoom.us/webinar/register/WN_M4_SAwHDTyaYPSnqE45F4A?t=1620380801226
 
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