World ME Day 2026 (May 12th)
- Thread starter Yann04
- Start date
-
- Tags
- world me day
Yann04
Senior Member (Voting Rights)
My partner is planning on doing a bake sale at their university (and the one I dropped out from due to ME!)
The fundraising is for Sequence ME and the Austrian ME Association.
(Not expecting people to donate just wanted to share the link because I’m quite excited about this bake sale)
The fundraising is for Sequence ME and the Austrian ME Association.
World ME Day Bake Sale @ CEU - Action for M.E. (SequenceME Study)
Help Rachel Risako Asano raise money to support Action for M.E.
www.justgiving.com
(Not expecting people to donate just wanted to share the link because I’m quite excited about this bake sale)
Chandelier
Senior Member (Voting Rights)
Trial By Error: News Bits--"Frail & Furious" for #Millions Missing; Usual Suspects at Psych Confab; Long COVID Advocates Channel ACT UP | Virology Blog
By David Tuller, DrPH *This is a crowdfunding month at UC Berkeley. If you’d like to support my work, the link is here. ********** "Frail and Furi ...
virology.ws
V.R.T.
Senior Member (Voting Rights)
Good article as always Dave - i would make the small point that comparing the activists in Paris to Kanye West is probably not the best point of comparison considering that in the last few years West has openly claimed to be a Nazi and admire Hitler, sold swastika merch on his website and recorded a song to that effect*. And of course the BPS lot have in the past compared ME/CFS activists to Nazis.Trial By Error: News Bits--"Frail & Furious" for #Millions Missing; Usual Suspects at Psych Confab; Long COVID Advocates Channel ACT UP | Virology Blog
By David Tuller, DrPH *This is a crowdfunding month at UC Berkeley. If you’d like to support my work, the link is here. ********** "Frail and Furi ...
*Fwiw he has apologised and claimed he was off his meds for a long time but...
Good point, I hadn't thought of that. I just found the image of him rushing the stage to be similar, but probably would have been better not to mention, in retrospect.
ahimsa
Senior Member (Voting Rights)
Here's the #MEAction web page for Millions Missing 2026:
www.meaction.net
#MILLIONSMISSING | #MEAction
#MEAction is dedicated to taking action in places that affect people with ME, Long COVID, and other chronic illnesses. Join us!
www.meaction.net
ahimsa
Senior Member (Voting Rights)
From the ME Association:
meassociation.org.uk
ME Awareness Week - The ME Association
For ME Awareness in May 2020 we are featuring the themes The Lost Years, Symptoms and Coronavirus and publishing stories from people with M.E. every day of the month.
meassociation.org.uk
A post about the #MEAction UK campaign for better services for severe and very severe ME/CFS has been moved to
United Kingdom: News from #MEAction Network UK
United Kingdom: News from #MEAction Network UK
Kalliope
Senior Member (Voting Rights)
A Life Hidden by Naomi Whittingham
You Are Not Forgotten: The Gift of Being Remembered
quote:
I am writing this on the eve of ME Awareness Week, a point in the year where many of us feel more forgotten than ever. Precious resources are directed outwards towards a world that can appear indifferent at best and uncaring at worst. It’s one of the reasons why I no longer actively engage in attempts to raise awareness.
But something unexpected happened this week, and reminded me that people think about us more than might often be apparent.
alifehidden.com
You Are Not Forgotten: The Gift of Being Remembered
quote:
I am writing this on the eve of ME Awareness Week, a point in the year where many of us feel more forgotten than ever. Precious resources are directed outwards towards a world that can appear indifferent at best and uncaring at worst. It’s one of the reasons why I no longer actively engage in attempts to raise awareness.
But something unexpected happened this week, and reminded me that people think about us more than might often be apparent.
You Are Not Forgotten: The Gift of Being Remembered
You are not forgotten. How powerful four words can be. They tell us that we are still part of the world; that our lives matter; that we are held in the hearts of those who know us, eve…
alifehidden.com
Grigor
Senior Member (Voting Rights)
Oh I made another short video with 8 men answering some questions about their life with ME. I don't think I've ever seen a video with just men?
It was filmed with their phones and such, so it's not a Hollywood production, but it's still a very special project.
It was filmed with their phones and such, so it's not a Hollywood production, but it's still a very special project.
ahimsa
Senior Member (Voting Rights)
I posted a long thread on Mastodon on May 12. Posting the thread here in case anyone is interested.
disabled.social
Just FYI, to see this thread there's no need to log in, no advertisements, and no tracking, cookies, etc. I checked with 2 browser plug-ins — EFF's privacy badger and uBlock origin — and both show 0 trackers.
Ahimsa (@ahimsa_pdx@disabled.social)
Attached: 1 image It's May 12th, International ME/CFS Awareness Day Also called World M.E. Day! This thread talks about 4 things: 1. My ME/CFS story (brief) 2. Facts about ME/CFS and Long Covid 3. Helpful resources for patients (and friends/family) 4. Actions you can take to help folks...
disabled.social
Just FYI, to see this thread there's no need to log in, no advertisements, and no tracking, cookies, etc. I checked with 2 browser plug-ins — EFF's privacy badger and uBlock origin — and both show 0 trackers.
Last edited:
ahimsa
Senior Member (Voting Rights)
#MEAction has posted an update on their May 12 event at the HHS headquarters in Washington, DC.
We Made Real Progress at #MillionsMissing — Here's What's Next
There's also a short video (less than a minute long)
We Made Real Progress at #MillionsMissing — Here's What's Next
There's also a short video (less than a minute long)
Peter T
Senior Member (Voting Rights)
I posted a long thread on Mastodon on May 12. Posting the thread here in case anyone is interested.
A really useful thread. I am not on Mastodon but it really deserves circulating widely.
Though it contains so much information, it is structure as lots of short post makes it very accessible.
Chandelier
Senior Member (Voting Rights)
I‘d like to second that. Very clear, concise, yet informative thread. Thank you!
I noticed your link to the s4me main page and was wondering whether it would be easier and less overwhelming for new folks if you used https://www.s4me.info/whats-new/ instead?
I remember some discussion a while ago in which several members mentioned their overwhelm with the main page until they found the what’s new link.
That's an excellent thread, ahimsa. Thank you for all your work on it.I posted a long thread on Mastodon on May 12. Posting the thread here in case anyone is interested.
Ahimsa (@ahimsa_pdx@disabled.social)
Attached: 1 image It's May 12th, International ME/CFS Awareness Day Also called World M.E. Day! This thread talks about 4 things: 1. My ME/CFS story (brief) 2. Facts about ME/CFS and Long Covid 3. Helpful resources for patients (and friends/family) 4. Actions you can take to help folks...
Just FYI, to see this thread there's no need to log in, no advertisements, and no tracking, cookies, etc. I checked with 2 browser plug-ins — EFF's privacy badger and uBlock origin — and both show 0 trackers.