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Show Up From Home Toolkit

#MillionsMissing 2025

This #MillionsMissing we are sending out our SOS from Washington, DC, from local events and from your home! We’re calling on Congress to Save Our Support Systems. Save Our Science. Save Our Society. 

TAKE ACTION FROM HOME: We need YOUR support from home to create a groundswell of attention online. Choose one or more of these activities, organized below by energy levels indicated by battery levels- low to higher (never full because we never get there!)

CHOOSE ONE:

Level 1:

  • Share #MEAction’s posts on May 12th and leading up to it. We need your interaction on social media to help us get seen! Like/comment/share. You know the drill.
  • Follow #MEAction on social media. We are @meactnet on Facebook, Instagram, YouTube, TikTok, Bluesky, and X. We are MEAction on LinkedIn

Comment on posts. This will bump up the post in the feed

  • Sign our NIH Letter - This letter urges the new NIH Director, Dr. Bhattacharya, to prioritize ME/CFS research.

Level 2:

  • Share a native post from your social media accounts. This can be prepped ahead of time or even shared early if you are not sure you will be up to it on May 12th.  Keep it simple and copy and paste some of our messaging or make it more personal with your story/photo/video.

  • Take a photo of yourself with a sign or wearing a red t-shirt - or use one of our premade signs - and share on May 12th. (Buy a 2025 #MillionsMissing t-shirt here.)


Use the hashtag #DisabilitySOS and #MillionsMissing, and tag @MEActnet

Other recommended hashtags: #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis  #DisabilityJustice #disability #spoonie #chronicIllness #SaveMedicaid #ProtectMedicaid

*Accessibility note: Keep it short when possible. Separate into shorter paragraphs. Add an image description and/or alt text to photos shared.

  • Share any good press about #MillionsMissing and #MEAction. Like/comment/share so they know that people are interested in them covering this issue!
  • Sign our NIH Letter - This letter urges the new NIH Director, Dr. Bhattacharya, to prioritize ME/CFS research.

Level 3:

  • Share a video or reel on May 12th or around that time. Explain why SOS #MillionsMissing matters to you and why you are participating. This can be filmed ahead of time. Check out this storytelling training for tips on sharing your story!

See messaging points here: US TOOLKIT: #MillionsMissing 2025


*Accessibility note: Please add captions if possible. This can be done in the app in places like Instagram and TikTok. We also recommend a video description if able. Describe what the person would be seeing.

  • Create a fundraiser for MEAction, send in a donation, or create a post asking for donations to MEAction.

- Create a fundraiser link: https://meaction.funraise.org/start-fundraising

- Donate or share our fundraiser: https://www.meactions.org/millionsmissing-2025-sos-fundraiser

  • Sign our NIH Letter - This letter urges the new NIH Director, Dr. Bhattacharya, to prioritize ME/CFS research.

Level 4:

  • Create art using our SOS messaging: Save Our Support Systems. Save Our Science. Save Our Society. This can be done using any type of medium and can be used in -person or shared on social media. Share on May 12th using the hashtag #DisabilitySOS and #MillionsMissing. Tag @meactnet.

               See our examples here:

US TOOLKIT: #MillionsMissing 2025 

* Accessibility note: Describe the photo or video you share. If you film the art and speak, add captions.

  • Sign our NIH Letter - This letter urges the new NIH Director, Dr. Bhattacharya, to prioritize ME/CFS research.
  • Call Congress and tell them to fund ME/CFS research and stop cuts to Medicaid - see our call script:

Level 5:

  • Share your story on social media, via email or any format you choose. Your personal stories are the most compelling way to get attention and attract others to join our fight. They are also the most powerful tool for reaching out to Congress, and sharing your story with the press.

  • Sign our NIH Letter - This letter urges the new NIH Director, Dr. Bhattacharya, to prioritize ME/CFS research.
  • Call Congress and tell them to fund ME/CFS research and stop cuts to Medicaid - see our call script: