Here's the latest news in Brief from the Science for ME forum - a weekly summary of research, advocacy, coming events, and more:
https://www.s4me.info/threads/news-in-brief-april-2023.32796/#post-472828/
A quick reminder that World ME Day is May 12!
There are a lot of advocacy events scheduled for May: Millions Missing, Blue Sunday, and more! I'll add links in the replies.
[Note: Due to mastodon bug link preview below goes to top of thread - link posted above is correct]
Update: Speaker list announced, see link below!
=====
In the USA #MEAction and Body Politic are holding Millions Missing 2023 at the Washington Monument on the National Mall in Washington, DC on May 12th. An art installation and live press conference are planned.
RSVP here:
https://www.meaction.net/event/millionsmissing-2023-watch-livestream-of-press-conference/
To learn more about ME/CFS see https://www.meaction.net/learn/what-is-me/
Join #MEAction in partnership with Body Politic for #MillionsMissing 2023 held at the Washington Monument on the National Mall in Washington, DC on May 12th that will feature an art installation and press conference. #MillionsMissing 2023 will demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and … #MillionsMissing 2023: Watch Livestream of Press Conference Read More »
Blue Sunday, The Tea Party for M.E. (an online event)
Sunday, May 14
Hosted by Anna Redshaw
Blue Sunday is a "dedicated day of fundraising, but also a day where we can come together to mark and celebrate our resilience and our strength in the face of this cruel and life-altering disease."
#MEAction UK and Scotland plan an online photo campaign for Millions Missing
"We want to flood social media with powerful images that show the reality of life with ME and what people are missing, as well as the loss it also means for carers, families, schools and communities, and ask the question #CanYouSeeMENow?"
Two photo categories:
1) Your view with ME
2) Spaces people with ME are missing from
https://www.meaction.net/2023/04/14/join-the-uk-and-scotlands-digital-campaign-this-millionsmissing/
May is nearly here and that means so is ME Awareness Week and #MillionsMissing! This year, #MEAction Scotland and #MEAction UK are returning to the central theme of #MillionsMissing – drawing attention to the people missing from their previous lives and wider society because of ME. Most people don’t understand how widespread ME is, or … Join the UK and Scotland’s digital campaign this #MillionsMissing Read More »
@isagalaev Sorry, I thought folks would go to the home page of included links ( https://www.meaction.net/ ) for more info. See attached screenshot.
ME is the term used more often in the UK. USA uses ME/CFS more often, see CDC and NIH websites.
Also, this comment demonstrates an important problem about ME, aka ME/CFS. A post using MS, instead of spelling out multiple sclerosis, would not cause the same confusion even though there are more ME patients (twice, I think?) than MS patients.
We’re Igniting a Global Revolution in ME Care Our movement fights for recognition, research and clinical education so that, one day, all people with myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME, or ME/CFS), and Long COVID will have access to compassionate and effective care. We are advocating for our communities at every government table and protesting on … Home Read More »
@ahimsa_pdx MS is also confusing, by the way, being a common abbreviation for Microsoft :-). But it's fine, as long as it's easy to find it out. I just thought the awareness campaign would be *the* place to spell it out.
Anyway, thanks for the pointers, I was familiar with ME/CFS, and that answered my question!
@isagalaev I'll try to pass on your comment to the UK team.
The main page for Millions Missing 2023 - USA protest at Washington Memorial - does give some info & mentions the relationship with Long Covid: https://millionsmissing.meaction.net/protest2023/
"#MEAction will host #MillionsMissing 2023 in partnership with Body Politic to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases."
@isagalaev Ran out of characters in my other post but wanted to let you know I added links for "What is ME/CFS" to several of my posts. It was a good idea because you are right that ME is not searchable.
I will try to remember to include this kind of link in the future!
But since I've got a fair amount of cognitive dysfunction (I have ME/CFS, Illness onset in 1990) I will probably forget -- please remind me if I do! 😁
ahimsa
Ivan Sagalaev 
