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Your Story Can Change Everything

  • Writer: #MEAction
    #MEAction
  • 7 hours ago
  • 2 min read

May is Myalgic Encephalomyelitis (ME) Awareness Month, and #MEAction is revving up for #MillionsMissing on May 12th! This year, our focus is on showing decision-makers that ME is a serious, complex disease that urgently needs appropriate recognition, support, treatments and care. But, we can’t do this without you. We need your stories about how ME has affected your life, and why the world needs to take ME seriously.  The #MillionsMissing are demonstrating across the world with demonstrations in the US, UK, Brazil, Denmark, Holland and Switzerland – to name a few! 


How to Show Up for #MillionsMissing 2026 


Tell Your Story!|

  • Share your story on social media during May 9-16. Write a post, re-share a post, create a video (under 3 mins) or get creative with art. All of the instructions are  organized by energy battery in our #MillionsMissing toolkit, including tutorials on how to tell your story. Also, don’t miss our story prompts to help you get started!  


  • Submit your story to our #MEAction's Story Bank. For U.S. advocates, this is a good option if you want #MEAction to share your story with decision makers, particularly for sharing why Medicaid health insurance matters to you or your family and friends..


  • Sign Our HHS Letter (U.S. only)! The HHS Secretary will issue guidance next month on who is considered “medically frail” and, therefore, exempt from work requirements. Sign our letter urging him to recognize people with ME/CFS and Long COVID as “medically frail.” Sign here. 

Don’t forget to take care of you! There are many ways to tell your story and it is all helpful. Just be yourself and know that if sharing your story brings up big feelings, you are not alone! Take your time. Be gentle with yourself. 

Watch Cory the Cat explain how to participate by battery level!



Join a #MillionsMissing Event! 

Join a local #MillionsMissing event:    

US: #MEAction is organizing a storytelling and art demonstration at HHS in Washington D.C. on May 12th. Join us! Register here. UK: UK is mobilizing the community to ask their MPs to lobby for an NHS Service for the very severe. Join the campaign. 

#MEAction Scotland is running an email campaign between 11-15 May targeting newly elected Members of the Scottish Parliament (MSPs). Learn more.

Brazil: Brazil is advocating for its Ministry of Health to officially recognize ME/CFS and develop diagnostic and treatment guidelines. Learn more.


Switzerland: Zurich is demonstrating to raise awareness and call for research. Learn more.


Denmark: Denmark is turning out to call for recognition and research for ME. Learn more.  


Holland: Join Holland in sharing your ME story! Learn more.

Email info@meaction.net with a link to your event, if you’d like us to include it on our global #MillionsMissing page. 


Support Our Work! 


We can’t do this work without your support! Donate to our #MillionsMissing fundraiser today!

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