#MEAction Millions Missing 2026 Campaign Announced

[ahimsa]

#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

This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is. We ask you to share your story on social media, once again, about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve.

In the U.S., our community risks losing their government health insurance (Medicaid) unless they can prove they have a "serious or complex medical condition” in order to get a "medically frail" exemption from new work requirements.

In the UK, individuals are at risk of starving in hospitals because ME is still not taken seriously. Doctors and researchers still psychologize ME, despite the updated NICE guidelines.

Globally, ME is severely underdiagnosed, and there are still few ME clinicians available. We often face the danger of being misdiagnosed and admitted for psychiatric care in some countries.

All of these injustices happen because ME is not taken with the seriousness we deserve. It’s why we are asking you to amplify the medical frailty of ME. We are frail and furious and we need you to join this fight!

This web page has links for more info on USA, UK, and Global actions. (some still TBD)

Toolkit (Google doc):

2026 #MillionsMissing Take Action Toolkit

#MillionsMissing 2026 Toolkit Governments and healthcare systems around the world fail to classify myalgic encephalomyelitis (ME) as a serious, complex medical condition, leading to significant neglect in medical care and social services. Over and over again, people with ME and Long COVID are ...

docs.google.com

More details in the #MEAction news thread:

Post in thread 'USA: News from #MEAction'

Apr 3, 2026

#MEAction has posted information about their May 12th #MillionsMissing "Frail & Furious" campaign for 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

This #MillionsMissing, we are Frail and Furious! This May, we will come together to show the world how devastating this disease is.

We ask you to share your story on social media, once again, about what it’s like to live with this serious, complex medical condition in order to get the recognition we need and deserve.

In the U.S., our community risks losing their government health insurance (Medicaid) unless they can prove they...

• ahimsa

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[ahimsa]

There's now a page on the #MEAction website about storytelling, encouraging all people with ME to share their story online:

#MILLIONSMISSING STORYTELLING | #MEAction

Share your story using our #MillionsMissing toolkit, and these 5 tips from Shalida Askanazi.

www.meaction.net

This web page has a link to the 2026 Millions Missing toolkit (shared in this thread earlier, but the document might have updates) as well as two videos with storytelling tips.

The first video (less than 3 minutes long) is from Shalida Dobbins and includes a transcript.

The second video (2 hours) and is a recording of storytelling training by Kirsten Farrell for last year's Millions Missing.

May 12 is coming up soon! It's hard to believe today is the last day of April.

 

[MrMagoo]

I’m glad they are doing something, but I’m really fed up of these types of campaigns. I don’t want to share my story, I’m a private citizen and I don’t want to think about my ME journey or what it’s taken from me, in public.Its bad enough in private.
Just give me some care. Health, Social, whatever.

 

[BrightCandle]

I’m glad they are doing something, but I’m really fed up of these types of campaigns. I don’t want to share my story, I’m a private citizen and I don’t want to think about my ME journey or what it’s taken from me, in public.Its bad enough in private.
Just give me some care. Health, Social, whatever.

I am a bit jaded just because I don't think a lack of knowledge of the disease is what is holding us back, government and medical prejudice is. These campaigns aren't going to change that prejudice nor will they really hit with the media to try and force the issue.

 

[MrMagoo]

I am a bit jaded just because I don't think a lack of knowledge of the disease is what is holding us back, government and medical prejudice is. These campaigns aren't going to change that prejudice nor will they really hit with the media to try and force the issue.

I just think they need a better campaign, it’s not going to ”cut through” as you say, and the only box it’s ticking is community involvement.