World ME Day 2026 (May 12th)

[Yann04]

A thread for this. I don’t think it’s been made yet.

 

[Yann04]

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.

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]

 

[dave30th]

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.]

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

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.

*Fwiw he has apologised and claimed he was off his meds for a long time but...

 

[dave30th]

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*.

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]

Here's the #MEAction web page for Millions Missing 2026:

#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]

From the ME Association:

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

 

[Trish]

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

 

[Kalliope]

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.

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

 

[Laurie P]

Wow! Thank you so much @Grigor for this outstanding video. As always, you did such a great job! I don't have words to describe how much I appreciate what you conveyed and how conveyed it.

For ME Awareness Month I made a severe ME body‑bag “dance” film about death within the ME community.