🚨 One week until May 12, International ME/CFS Awareness Day!

ME/CFS = myalgic encephalomyelitis / chronic fatigue syndrome

This toolkit from #MEAction has a list of actions, sorted by battery level, for the week of May 9-16:

https://docs.google.com/document/d/1uJflVh8PP209MPEYSxeVw1SmFWlez0Gox1C9B8y98VY/

If all you can do next week is rest, that's OK!

But if you can, please like and boost posts about ME/CFS - look for hashtags #MillionsMissing & #FrailAndFurious

Or share your story - see toolkit for tips!

1/2

@mecfs

#MEcfs #PwME

RE: https://disabled.social/@ahimsa_pdx/116495749131742719

Update from #MEAction:

"How to Participate in #MillionsMissing 2026"

https://www.meaction.net/post/your-story-can-change-everything

Some actions listed:

- Share your story on social media from May 9 to 16

- Submit your story to #MEAction's Story Bank

- Help protect Medicaid by signing the letter sent to HHS Director

- Register to join the event in Washington D.C. on May 12

@mecfs

#MEcfs #PwME #LongCovid #PwLC #ChronicIllness #Disability #Medicaid #FrailAndFurious

May 12 is coming soon! #MEAction has this request:

"Telling your story for Millions Missing this year is so important!

There are MANY ways to tell your story & it all helps! Be yourself & know that if sharing your story brings up big feelings, you are not alone!"

Tips for how to tell your story:

https://www.meaction.net/millionsmissing-storytelling

This has a link to the Millions Missing toolkit and two videos.

@mecfs

#MEcfs #PwME #LongCovid #PwLC #MillionsMissing #FrailAndFurious #ChronicIllness #Medicaid

"Blue Sunday" Tea Party
#MEAction North Carolina

Sunday, May 17
1 pm – 2:30 pm EDT

Blue Sunday is "a worldwide celebration of the ME community and the ways we support each other through this terrible disease. It is a way for people with ME to feel a sense of connection and community despite the isolation of this disease."

You're invited! 😊

Details:

https://www.meaction.net/event-details/blue-sunday-tea-party

Registration:

https://us06web.zoom.us/meeting/register/1Gx24nNBRHSuCB4ArBBsNA#/registration

@mecfs

#MEcfs #PwME #BlueSunday #MillionsMissing #Advocacy #Support

"#MEAction + Mayo Algorithm’s Effect on ME/CFS Care"

https://www.meaction.net/post/meaction-mayo-algorithm-s-effect-on-me-cfs-care

A diagnostic algorithm for ME/CFS was added to the AskMayoExpert online tool and then a resesarch study was done to evaluate it using real world data.

"The new study asks: was the introduction of this new tool associated with improved diagnostic accuracy of ME/CFS?"

@mecfs

#MEcfs #PwME #Diagnosis #MayoClinic #MedMastodon

Want to learn more about the "Frail and Furious" campaign for Millions Missing 2026?

Here's a video from #MEAction that explains the issues with Medicaid work requirements:

https://www.youtube.com/watch?v=C-3lWJTub30

I'll post the video transcipt as replies to this thread.

More details here:

https://www.meaction.net/millionsmissing26

@mecfs

#MEcfs #LongCovid #ChronicIllness #Disability #Disabled #Medicaid #MillionsMissing #USPol